narrative essay about hiv and aids

• A New Narrative for HIV/AIDS? How Tory Dent Made Her Way through the Prevailing Rhetoric of Identity, Death & Disease

Claire Atwood

         The prevailing solution to this issue has its own problems. As Couser points out, activists and persons with AIDS have typically attempted to subvert these stigmatizing narratives by going personal (79), and we have seen many memoirs and testimonials try to establish a more compassionate and individual narrative of the disease. These more personal narratives, claims Edelman, have not entirely freed HIV/AIDS from the larger, more imposing narratives of the disease, and they can even end up recycling similar stories and similar attitudes. In Edelman’s words, writing and speech on HIV/AIDS has been a history of “homophobic and antihomophobic forces alike generat[ing] . . . discourses that reify and absolutize identities” (86). That is, all sides of the debate tend to emphasize identity in a way that cannot actually contain the various ways in which a person can identify. What’s more, these personal narratives of AIDS can end up being interpreted ungenerously by a public readership, whose attitudes toward AIDS have already been determined by its larger (and often phobic) narratives. As such, the voices of individual stories tend to get absorbed into the politicized din of AIDS. Even in the creative media of art and literature, where persons with AIDS may have more say in representing their illness and themselves, the specter of those public narratives still hangs over their work. Such narratives make it difficult for writers and artists to separate their voices from those of politicians, scientists, and even friendly activists. They struggle, in other words, to find a voice that faithfully expresses their experiences without being subordinated to some greater agenda about death, promiscuity, or morality, among the many more we can imagine. Although the authors of autobiographical AIDS narratives have, in Couser’s words, “the potential of countering hegemonic scripts” (89), they are then faced with the problem of how to represent their experience when all available language they might draw on seems better built to serve an agenda.

This is the problem in which Tory Dent rather elegantly, if cryptically, inserted herself. Dent, a poet who wrote of her own experience with AIDs, passed away in 2005 of AIDS-associated illness after having written three books of poetry, winning the James Laughlin Award, and being honored by a Guggenheim Foundation grant. Reading her poetic sequence, “HIV, Mon Amour,” the title poem of her second book, reveals a possible solution to the problem of defining one’s voice, and therefore one’s own experience, when addressing HIV/AIDs. Her sequence is structured as a series of lyric love poems, all written to HIV, and here is where she first distinguishes herself from the prevailing literature on HIV/AIDS: her lyric poetry is as far removed as possible from journalistic, scientific, and political expression. This is not to say that she is the only or first poet to write lyrically about HIV. Hers is a poetry, however, that stands out for the way it codes the most prosaic experiences in metaphors so imagistic and visceral that the poems overwhelm any influence of those larger, socially prescriptive narratives. While Dent adopts stigma by the very act of writing about HIV/AIDs, she uses it unconventionally; Edelman notes that the prevailing narratives are “strain[s] of metaphor that can appear so natural” that they seem to be true (91), but throughout her poems Dent adopts these narratives in a way so blatant as to make them seem anything but natural. In one poem Dent describes herself in terms of immorality and promiscuity, two prominent narratives surrounding HIV, but conveys these scripts in their most graphic form: “I float, a corpse offered up as carrion . . . / stretched out, a canvas, a salt lick, a virgin, for only a god would seduce a virgin / until she becomes a whore” (XXVII 11-13). The effect is to strip the sex-shaming narrative of its allure by bringing it out into the open and to assert the poet’s individual voice as more powerful than that of the public. But such lines are just as likely to alienate Dent’s speaker from AIDS activists and the language they use. In this sense, Dent leverages alienation to assert autonomy. What we will see, then, is that Dent appropriates certain narratives of AIDS by taking them to jarring metaphorical extremes. She builds, in these extremes, a language for herself that tears itself away from our prevailing notions of HIV.

To better understand Dent’s relationship to those prevailing narratives of HIV/AIDS, it will be helpful to view them through the lens of Erving Goffman’s theory of stigmatization. Goffman outlines this theory in his now-classic book, Stigma: Notes on the Management of Spoiled Identity . Examining Goffman’s ideas will be particularly useful in understanding how public narratives of HIV/AIDS often end up determining how individuals with AIDS relate to themselves, to their disease, and to the world around them. Goffman claims stigma is usually attached to some personal “defect,” either in appearance, character, or group identity (4), that prevents others from giving the stigmatized individual “the respect and regard” (8) they are due. That stigmatized individual, says Goffman, ends up internalizing the stigma itself, often “finding that some of his own attributes warrant it” (8-9). The resultant “discrepancy . . . between an individual’s virtual and actual identity . . . spoils his social identity, cutting him off from society and himself” (19). Stigmatized individuals end up playing two social roles as a result of this discrepancy between their identities, and they become adept at switching between those roles. On one hand, they will go to great lengths to identify with other stigmatized people, and on the other, they will go to equally great lengths to identify with the larger public as a normal person (134-5) Although most of the stigmas Goffman mentions are physically visible (deformities, for example) and non-life-threatening (16), the existence of a stigma surrounding AIDS is undeniable. Arguably, the deadliness and visual undetectability of AIDS only add to its stigma by adding paranoia and fear ( do they have it? could they spread it to me? ) to a disease already conflated with sexual transgression in the public’s thoughts.

As such, we may apply Goffman’s theories to HIV/AIDS narratives and to Dent in particular, reaching the preliminary conclusion that Dent’s extreme appropriation of HIV/AIDS narratives is her way of rebelling against stigma by destroying all trace of the role of the normal within herself. Our analysis is complicated, however, by the fact that Dent does not belong to the demographic that has been most heavily stigmatized for HIV/AIDS in the past: gay males. After all, Couser says of HIV/AIDS that “though it is by no means confined to gay men, [it] remains associated in the minds of many with male homosexuality” (100). At issue, of course, is not whether HIV narratives affect Dent, but whether prevailing narratives of HIV would take her into consideration. As poet and critic Wayne Koestenbaum explains, it is not just the demographics of persons with AIDS but the demographics of representation that have shifted; representing AIDS is no longer dominated by gay men. As time goes by, Koestenbaum observes, “heterosexual transmission of AIDS gains publicity, and . . . the dividing line blurs between straight and gay as identities (as opposed to behaviors)” (168). This means that writers like Tory Dent are still inevitably faced with stigma when weighing in on HIV/AIDS, even if that stigma originated from a different sexual demographic. Although Dent might or might not participate in the specific sexual practices that have been stigmatized most in HIV/AIDS narratives (Koestenbaum 168), the blurring of sexual identities with respect to the spread of the disease means that the demographic boundaries of stigmatization break down as well. Given these conditions, the alienation that Dent uses to eke out an autonomous voice can be seen as a consequence of her uniquely alienated position with respect to the HIV/AIDS epidemic: she is burdened with the stigma that affects all persons with AIDS, but she is not a part of the demographic that was originally stigmatized. Her disruption of our expectations of a person with AIDS will be the first of many that Dent leverages to make an autonomous voice for herself.

As an alternative to any form of community, Dent depicts herself as utterly alone but for her one intimate and addressee, HIV. We see this when Dent writes that in the “amphitheater” of her life’s performance, “[n]o one was there as the beholder but us” (XIV 7-8) – here “us” should not be read as talking to us, her readers, but to her sole addressee. Because Dent is imagining herself and HIV as social actors, we can view her writing alongside another component of Goffman’s theory of stigma. Goffman theorizes that stigmatized people have “back places” (81) where they can be with people who have similar problems and “find they need not try to conceal their stigma” (81). Within “HIV, Mon Amour,” it seems that Dent’s only “back place” is structured into the conceit of the poetry: the space of close conversation between herself and HIV. Other figures only play into the poetic sequence briefly as emblems of the malevolent discourse from which she so pointedly distances herself. For example, take the following lines: “‘I think women who are HIV positive that have children are murderers, don’t you?’ / said the woman on a lawn chair” (VIII 5-7). The clever line break gives us momentary pause as we are unsure who is uttering such mean-spirited words. In response, Dent “look[s] to the swimming pool for alliance” (VIII 8), showing the extent of her alienation from those who stigmatize AIDS as much as her own potential supporters. So while Dent generally writes in a way that alienates her work from the narratives surrounding AIDS, she does feel isolated from them. Her “eyes exempt themselves from compassion, from cultural interests, from the peripheral vision of human potential” (VII).

What does this exemption say about Dent’s stigmatization and her relationship to those narratives surrounding HIV/AIDS? The answer lies in the way her isolation from society and other persons with AIDS allows her to appropriate their stories and iconography in a way that negates the meaning of those narratives. She does not, in other words, simply place her voice within the politicized narrative of HIV. In poem VI, for example, Dent imagines a symbol of HIV/AIDS solidarity, a red ribbon, that “tapes my mouth, blinds my eyes, erases my genitals” (11). That Dent has called the ribbon “simple” and a “factual litany / shaved down to the particular” (9-10) in the previous lines shows that she doubts the validity of the too-reductive ribbon as a symbol at all. The fact that it is the ribbon, not the disease, that she envisions “string[ing] me up, a carcass in an icebox” (12) shows her resistance to what it symbolizes: letting AIDS (in a distilled and palatable form) define her identity and, by extension, her writing. The figure of the ribbon is Dent’s response to what scholar Judith Williamson describes as the “complete absence of meaning” of HIV infection (69). That Dent imagines what is (for her) a trivial symbol as the cause of her own death reflects that the fatal stigma of HIV/AIDS seems arbitrary due in part to the lack of any physical marking of the disease (it needs a ribbon to give it physicality), and also to Dent’s sense of alienation from the community that the ribbon implies. This sense of arbitrariness alienates Dent from what Williamson describes as the “narratives that seem to be going somewhere” and through which “AIDS is invested with meaning” (69-70) in order to fit into a social agenda. Specifically, Dent is eschewing the “melodrama . . . whose sentimentality is the flip side of horror’s brutality” (Williamson 71). The ribbon is a perfect example of such melodrama, drawing persons with AIDS into a united front of solidarity with strangers, celebrities, activists, the research organizations funded by sales, and the merchandisers who incorporate the ribbon into products. By taking the narrative embodied in the ribbon to violent extremes, Dent is alienating herself not only from PWA but from the discourse associated with them, which seeks to subordinate individual experiences with illness to broader socio-political goals.

Indeed, Dent attempts to free herself not just from the reductive narratives of stigmatizers and activists, but also from the construal of discourse as a politicized tool that simplifies or categorizes reality. The fundamental unreliabilty of such discourse is a particular issue for HIV/AIDS because, as Lee Edelman describes, the very concept of talking about HIV/AIDS has been imbued with political significance. AIDS stigmatizers have viewed discourse on HIV/AIDS as a direct means of spreading  homosexuality (Edelman 87), while activists have viewed “the production of discourse . . . as a mode of defense . . . against the opportunistic infections of demagogic rhetoric” (Edelman 87-8). Dent rejects these approaches by detaching herself from the use of language as a social tool, which helps to explain the abstraction and inaccessibility of her words as a deliberate attempt to retreat from the political fray. When describing her anticipation of death in poem XVII, for instance, Dent states that the “innocence of abyss arches its trajectory of deletion across the image repertoire of your failures” (2-3). Such lines are representative of Dent’s preferred style of using large words and creating insulated images whose sensory aspects are subordinated to the abstract. This loftiness of tone makes her language difficult to understand in demagogic socio-political terms, but it also makes it hard to understand in terms that might be more friendly to persons with AIDS. Dent’s poems lack rhyme, varying line length, and the other formal features that make poetry more visually and mentally palatable. Instead, they form imposing blocks of texts on the page with long lines and phrases. Thus, the formal structure of the collection rejects inattentive reading and the simplicity of ideas that often comes with demagogic rhetoric. Together, the style and structure of the poems help to ensure that Dent’s poetic idiosyncracies are understood as clues to her complex personal experience, rather than as something more generalizable or applicable, such as an attempt to chronicle the experience of HIV. Dent makes her writing difficult to shove into any prevailing wisdom on the disease.

To assert her personal identity in this way, Dent expresses doubt in the project of her poetry by acknowledging the conflict between her wish to impose narrative on her life (and, by extension, her poetry) and her skepticism about trying to make any sense of her experiences. This dilemma is introduced in poem I, when she lays out the project of the collection while at the same time remarking on its futility. When she describes “reverberations of light” (11) that “attempt to forestall the entropy of horizon from the sun” (11), Dent is alluding to her attempts to order her experience through writing as regulated and beautiful as light-reverberations, but which will ultimately prove powerless to stop the chaos signaled by “entropy.” The figure is effective precisely because it plays off of the familiar narrative in which the emphasis, as Couser explains,  on the “invariable fatality” of AIDS causes sufferers to “see themselves prematurely as doomed” (82). The vivid and unusual phrasing of the metaphor serves an analogous role to the extreme appropriations of narratives; even though Dent is speaking about inevitability from within a familiar narrative, she asserts her voice by acknowledging the impact public discourse has on her self-perception while making sure that the lyric imagery of her work makes a stronger impact than the imposed narratives. In this way, she lets the individual voice dominate the socially imposed one.

True, employing her own poetic voice at times becomes a chore for Dent, who in poem XXII expresses her frustration that she must keep making figures of speech and images out of prosaic life because “it’s not enough to love . . . work . . . pray” (5-6). These moments, like the self-questioning in Chambers’ AIDS diaries, might seem at first to be a compromise of her literary ideals, but in reality they serve to enhance the writer’s credibility. Allowing cracks of exhaustion, self-doubt, and anger at her project to appear through the veneer of beautiful poetic imagery emphasizes that Dent is not giving us an idealized portrayal of HIV; the tone of the poetic sequence seem to fluctuate based not only on what is most artistically sound but on how well Dent might be feeling on a given day. These reflexive self-doubts increase in frequency towards the end of the collection. In poem XXXII, Dent wishes she “could fast forward, dismiss my stand-in, cancel / my performance . . . fulfill my misery quota and be done with it” (2-4). Once again, we see Dent attempting to appropriate and subvert a particular AIDS narrative – this time, the perception (as identified by Couser) that “seropositive individuals . . . somehow [are] deserving [of] their disease” (83), as if Dent could do penance for it to stave it off. The difference between this particular appropriation and her other, more extreme, violent, and vivid appropriations of narratives, is this: her language here is unadorned and even falls into cliché with “fast forward” and “misery quota.” Where the earlier appropriations were made extreme to take back the language of HIV/AIDS, this one is so half-hearted that it becomes a poignant expression of Dent’s humanity in the face of possible death. Because the numbered cycle can be interpreted as a chronological record of Dent’s experience with HIV/AIDS, making the poems retain lofty imagery all the way through would itself ring false. Instead, letting her image-making capabilities vacillate with her vacillating health preserves a vital component of Tory Dent’s autonomous voice: the jarring reminder of her existence and her real experience beyond the page.

Dent’s ingenuity in breaking these parameters is a large part of what made “HIV, Mon Amour” a remarkable achievement for its time. In the context of HIV/AIDS’ politically fraught history, Dent’s poetry put the insidious potential of language out in the open and affirmed that the narrative of HIV/AIDS can be reclaimed from within. Today, however, the discourse on HIV/AIDS is in danger of falling silent altogether. “HIV, Mon Amour” was published in 1999, arguably past the peak of HIV/AIDS’ media attention, and since then it seems the issue has only grown more distant from the public’s mind. In 2009, the nonpartisan non-profit Public Agenda released a report on attitudes towards HIV/AIDS among the general public; by and large, the focus groups they interviewed felt HIV/AIDS was “no longer a serious issue” and noted that there was “little to no continuing dialogue concerning AIDS” (13). As such, we have compelling reasons to revisit Dent’s poetry today. While combating the stigma of HIV/AIDS is an important task, works like Dent’s do more than subvert stigma and oppressive narratives – they create their own narratives  that assert the complex human lives behind the statistics and red ribbons. No matter what the era, Tory Dent’s poetry will remain an exemplar of how personal, frank, and potent HIV/AIDS representation can be. Whether in literature, film, art, or journalism, portrayals like hers have the potential to sway minds and sympathies. They have worked well against hysteria; perhaps they will be able to do something about apathy.

Works Cited

Chambers, Ross. Untimely Interventions : AIDS Writing, Testimonial, and the Rhetoric of Haunting . Ann Arbor, MI: University of Michigan, 2004. Print.

Couser, G. Thomas. "HIV/AIDS and Its Stories."  Recovering Bodies: Illness, Disability, and Life-Writing . Madison: University of Wisconsin, 1997. 81-176. Print.

Dent, Tory. HIV, Mon Amour: Poems.  Riverdale-on-Hudson, NY: Sheep Meadow, 1999. Print.

Edelman, Lee. "Equations, Identities, and "AIDS"."  Homographesis: Essays in Gay Literary and Cultural Theory . New York: Routledge, 1994. 79-117. Print.

Goffman, Erving.  Stigma: Notes on the Management of Spoiled Identity.  Englewood Cliffs, NJ: Prentice-Hall, 1963. Print.

Koestenbaum, Wayne. "Speaking in the Shadow of AIDS."  The State of the Language . Ed. Leonard Michaels and Christopher Ricks. Berkeley: University of California, 1980. 163-70. Print.

Rochkind, Jonathan, Samantha Dupont, and Amber Ott.  Impressions on HIV/AIDS in America: A Report on Conversations with People throughout the Country . Rep. Public Agenda, May 2009. Web.

Williamson, Judith. "Every Virus Tells a Story: The Meanings of HIV and AIDS." Taking Liberties: AIDS and Cultural Politics . Ed. Erica Carter and Simon Watney. London: Serpent's Tail, 1989. 69-80. Print.

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Essay on AIDS for Students and Children

500+ words essay on aids.

Acquired Immune Deficiency Syndrome or better known as AIDS is a life-threatening disease. It is one of the most dreaded diseases of the 20 th century. AIDS is caused by HIV or Human Immunodeficiency Virus, which attacks the immune system of the human body. It has, so far, ended more than twenty-nine million lives all over the world. Since its discovery, AIDS has spread around the world like a wildfire. It is due to the continuous efforts of the Government and non-government organizations; AIDS awareness has been spread to the masses.

AIDS – Causes and Spread

The cause of AIDS is primarily HIV or the Human Immunodeficiency Virus. This virus replicates itself into the human body by inserting a copy of its DNA into the human host cells. Due to such property and capability of the virus, it is also known as a retrovirus. The host cells in which the HIV resides are the WBCs (White Blood Cells) that are the part of the Human Immune system.

HIV destroys the WBCs and weakens the human immune system. The weakening of the immune system affects an individual’s ability to fight diseases in time. For example, a cut or a wound takes much more time to heal or the blood to clot. In some cases, the wound never heals.

HIV majorly transmits in one of the three ways – Blood, Pre-natal and Sexual transmission. Transfusion of HIV through blood has been very common during the initial time of its spread. But nowadays all the developed and developing countries have stringent measures to check the blood for infection before transfusing. Usage of shared needles also transmits HIV from an infected person to a healthy individual.

As part of sexual transmission, HIV transfers through body fluids while performing sexual activity. HIV can easily be spread from an infected person to a healthy person if they perform unprotective sexual intercourse through oral, genital or rectal parts.

Pre-natal transmission implies that an HIV infected mother can easily pass the virus to her child during pregnancy, breastfeeding or even during delivery of the baby.

AIDS – Symptoms

Since HIV attacks and infects the WBCs of the human body, it lowers the overall immune system of the human body and resulting in the infected individual, vulnerable to any other disease or minor infection. The incubation period for AIDS is much longer as compared to other diseases. It takes around 0-12 years for the symptoms to appear promptly.

Few of the common symptoms of AIDS include fever , fatigue, loss of weight, dysentery, swollen nodes, yeast infection, and herpes zoster. Due to weakened immunity, the infectious person falls prey to some of the uncommon infections namely persistent fever, night sweating, skin rashes, lesions in mouth and more.

Get the huge list of more than 500 Essay Topics and Ideas

AIDS – Treatment, and Prevention

Till date, no treatment or cure is available for curing AIDS, and as a result, it is a life-threatening disease. As a practice by medical practitioners, the best way to curb its spread is antiretroviral therapy or ART. It is a drug therapy which prevents HIV from replicating and hence slows down its progress. It is always advisable to start the treatment at the earliest to minimize the damage to the immune system. But again, it is just a measure and doesn’t guarantee the cure of AIDS.

AIDS prevention lies in the process of curbing its spread. One should regularly and routinely get tested for HIV. It is important for an individual to know his/her own and partner’s HIV status, before performing any sexual intercourse activity. One should always practice safe sex. Use of condoms by males during sexual intercourse is a must and also one should restrict oneself on the number of partners he/she is having sex with.

One should not addict himself/herself to banned substances and drugs. One should keep away from the non-sterilized needles or razors.  Multiple awareness drives by the UN, local government bodies and various nonprofit organizations have reduced the risk of spread by making the people aware of the AIDS – spread and prevention.

Life for an individual becomes hell after being tested positive for AIDS. It is not only the disease but also the social stigma and discrimination, felling of being not loved and being hated acts as a slow poison. We need to instill the belief among them, through our love and care, that the HIV positive patients can still lead a long and healthy life.

Though AIDS is a disease, which cannot be cured or eradicated from society, the only solution to AIDS lies in its prevention and awareness. We must have our regular and periodical health checkup so that we don’t fall prey to such deadly diseases. We must also encourage and educate others to do the same. With the widespread awareness about the disease, much fewer adults and children are dying of AIDS. The only way to fight the AIDS disease is through creating awareness.

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Class, queerness and illness in the ‘ post-crisis ’ era: rewriting the narrative of HIV

Research Officer, La Trobe University

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Dion Kagan does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.

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I often read a book’s acknowledgments to see who an author thanks for supporting the creation of their work and how they go about thanking them.

Among those mentioned at the end of Jonathan Bazzi’s autofiction is the award-winning Italian novelist Viola Di Grado. Bazzi thanks Di Grado for “curbing my wild proliferations of thought”, though frankly it’s hard to fathom a version of this memoir that’s even more wild and proliferating.

Review: Fever by Jonathan Bazzi (Scribe Publications)

In Fever , the 37-year-old Milanese author meditates on illness and wellness , sex and death, families and their undoing, class and Italianness, mothers and sons, desire, art, education and more. When they land in a psychiatrist’s office, Bazzi is “a river that’s overflowing. I can’t stop.” Their account of growing up poor and queer in Northern Italy and of coming to terms with HIV in the era of undetectable viral counts is a veritable explosion of ideas.

The story of an illness

“Three years ago the fever came over me and never left … One week, two weeks.” Midway through the first page, we’re already months into the story of an illness, plunged into a life of anxious visits to clinics and puzzling test results. Jonathan, 31. Boyfriend called Marius, two Devon Rex cats, casual job as a yoga instructor. Then, suddenly, a fever that will not subside.

Bazzi’s spare, efficient prose feels urgent, as if narrated by a frank and fast talker who gets intermittently bored. They wrap up one story, only to pick up the thread of another. This pace belies the hours, weeks and months of a life spent in waiting rooms and in bed, languishing in the chronic uncertainty of not knowing what’s wrong.

It also recalls the political urgency of earlier AIDS diaries and memoirs from the “plague years”. Although Bazzi will soon understand that they are HIV positive, and that there is a clear – and highly effective – treatment trajectory proceeding from that diagnosis, the body conceals other unsolved mysteries, and so the sense of urgency and uncertainty remains.

Alternating with these breathless chapters of autopathography (a patient’s account of illness) are episodes from Jonathan’s childhood and adolescence in the working-class city of Rozzano. Rozzano is on the “extreme Southern periphery of Milan”, and is peripheral in other ways, too. Women wear nightgowns to the supermarket and kids with fake tans whip past on Vespas. A bit “like the Bronx of Northern Italy”, Rozanno is a place into which “poverty and disadvantage are pumped […] like wastewater.”

The Rozanno effect infuses every facet of Jonathan’s life. Their parents, Tina and Roberto, had a “Rozzano love story” – that is, a relationship that didn’t last long, “a love that quickly soured into hate and spite”.

When teenage Jonathan starts meeting friends and lovers outside the city, they always ask to be dropped off several blocks from home. They don’t want anyone to see the “crumbling plaster façade” or the “appalling inhabitants leering from the balconies” of the public-housing tower in which they live. These “big, drab” towers that dominate the city have basements full of rats where drug users go to shoot up.

It’s a place “full of weirdos”, but not one that celebrates or nurtures them. Gender roles are rigidly policed; “men are made a certain way – they like Vespas, football, pussy – and women are made a different way”.

Jonathan prefers reading and drawing; at school he’s bullied relentlessly. “Rozzano hates me. I have hated Rozanno. Why was I born here?” Developing a stutter and a passionate interest in art doesn’t help, and he eventually drops out.

Read more: 'The beautiful HIV-positive community': Queer Eye's Jonathan Van Ness shines a spotlight on the changing face of HIV

The social construction of disease

“Nothing could be more meaningless than a virus”, wrote Judith Williamson about HIV/AIDS in 1989. “It has no point, no purpose, no plan; it is part of no scheme, carries no inherent significance.” And yet every disease, especially if it is new, mysterious and potentially life-threatening, offers opportunities for storytelling and interpretation.

Reflecting on their diagnosis, Bazzi parses the social meanings of HIV: “HIV confirms two things: you’re gay, and you’ve had sex. Maybe too much sex, and in a promiscuous manner.” Another story: HIV is part of a family curse. “Bazzi men are unlucky; they always die young”.

Recalling Susan Sontag’s two famous essays on disease, Illness as Metaphor (1978) and AIDS and its Metaphors (1988), Bazzi contrasts the metaphors used to understand cancer , which his father has, and HIV.

Cancer is a crazed proliferation of cells. HIV is cell death. Cancer is internal revolt, the body wanting too much, growing, expanding. HIV is an attack, an invasion, a capitulation.

The various stories Bazzi tests out reflect the abundance of social meanings produced in response to disease.

Much like COVID-19 , HIV has never been a simple collection of virological or biomedical facts. HIV/AIDS was the first global pandemic of the media age and since it first came to public attention in 1981, it has been extremely fertile territory for a wild proliferation of stories.

AIDS as a Communist plot to bring down the United States; AIDS as a virus developed in CIA laboratories to kill homosexuals. While compulsively researching online, Bazzi discovers that many of these outlandish ideas continue to circulate:

HIV is a hoax […] The biggest conspiracy of the twentieth century […] HIV and AIDS were invented by Big Pharma.

The stories we tell about disease, including the supposedly neutral language used by doctors, scientists and public health professionals, give structure and meaning to our understanding of it.

In the case of HIV, the proliferation of stories has been of particular interest to researchers, activists, people living with HIV and many others. Because the way these stories are told – particularly in the public sphere – can influence the way epidemics play out, including who does and doesn’t receive appropriate care.

Performing illness, from the dramatic to mundane

“HIV has its own history, its own traditions”, Bazzi writes.

Destinies, statistics, organisations, clinical cases, media stories. A long sequence of narratives that predate me, that I know very little about.

Despite these claims to ignorance, Fever is particularly illuminating on the social experience of illness – the way a set of rituals and performances play out around the sick body, and how these operate to confer a set of social roles.

At the centre of the plot is the sick body, which provides evidence, clues that propel the narrative of illness along and so must be monitored and traced, described and surveilled. “I am preparing my bodily fluids for examination. My body is invested with new meaning.”

Doctors are the other core protagonists in this drama, and they possess a crucial storytelling role. They are “priest-like”, with the power to assign the sick person “to a community”, allocating them “a narrative, a case study”. And of course, the key setting for such performance is the hospital, “the place where either you’re reborn or you die”.

Despite its urgent pace, Fever is a reminder that the story of sickness isn’t all dramatic climaxes. Chronic illness also involves very mundane and administrative tasks. Appointments, referrals, tests, prescriptions; the keeping and processing of medical records, payments, insurance paperwork. This is the everyday work of being unwell. Bazzi captures it in snatches of conversation overheard in waiting rooms.

“Do you have a health insurance card? Excuse me, have you provided a urine sample?” “That’ll be 27 euros and 80 cents.”

Importantly, the dramaturgy of illness creates and re-creates interpersonal roles and relationships. For example, Jonathan’s partner Marius tests negative and this powerfully changes their relationship.

The couple are now sero-discordant (where one person is HIV-positive, the other HIV-negative): “An asymmetry is established.” Marius’s blood “has been interrogated, and it tells a different story”.

And what if, in spite of existing narratives and social roles, your own illness disregards the established parameters? For Jonathan, HIV is a “catalyst” and their body an “ampitheatre”, but there will be more to the story of their fever before it’s resolved – if indeed it ever can be.

Read more: HIV/AIDS on screen: by focusing on history, we ignore the present

The HIV and AIDS memoir

Fever is being hailed as one of the “first contemporary personal narratives of living with HIV”. In spite of the upwards of 37 million people in the world living with the infection, this is a fair description.

During the 1980s and 90s, a large body of HIV/AIDS diaries and memoirs were published. The most famous were written by white gay men living through extreme physical suffering and often social isolation in the early years of the AIDS crisis.

Among them are works by David Wojnarowicz and Paul Monette in the United States, and Derek Jarman in the United Kingdom. In Australia, there was the extraordinary AIDS diary Unbecoming (1990) by Griffith University anthropology lecturer Eric Michaels. Far better known is Timothy Conigrave’s Holding the Man (1995), which was adapted for the stage and eventually the screen.

HIV/AIDS was – and remains – a carrier of heavily political meanings and these works served a testimonial function. They offered the experience of an individual but also paid witness to experiences of political abandonment and the failure of state institutions to properly respond to HIV/AIDS. Such testimonies enabled the expression of grief and mourning, but also provided a foundation for activism and political action.

These works also developed new experiential and expressive languages for thinking about illness. In so doing, they helped to transform public understandings of HIV. Alongside incendiary activist campaigns and other forms of cultural production, they played an important role in changing phobic and discriminatory narratives about HIV.

Fever is an inheritor of this tradition, but it’s a story about HIV in the “post-crisis” era.

Today, HIV positive people on treatment have a negligible viral load and largely cannot transmit the virus. Treatments are so significantly advanced that they have fewer and fewer side effects; new developments promise drugs that only need to be taken once a month or every two months. And yet, older ideas about HIV cast a lingering shadow. As Bazzi writes, “people living with the condition are still subject to a toxic blend of invisibility and guilt”.

A lack of conversations and stories addressing the contemporary experience of living with HIV may contribute to and exacerbate this stigma.

Bazzi is explicit in their refusal of this state of affairs, “rejecting the tradition of shame and discretion”.

Fever is indeed a landmark in this sense, because while the stories of the crisis era were prolific across genres and forms, very little media and literature has captured the experience of living with HIV now.

“My HIV diagnosis is an incontrovertible fact”, Bazzi concludes.

I have HIV – all that means is I have to see my doctor a lot, and do lots of tests. Like millions of other people in the world, for all kinds of reasons. Everything else is extrinsic. Put there by you, by us.

• Susan Sontag
• autofiction

Research Fellow Community & Consumer Engaged Health Professions Education

Professor of Indigenous Cultural and Creative Industries (Identified)

Communications Director

University Relations Manager

2024 Vice-Chancellor's Research Fellowships

Personal essay: What I've learned after living with HIV in secret for years

On the eighth anniversary of his HIV diagnosis, ABC News producer Tony Morrison , 32, opens up for the first time about his experience living with HIV in a personal essay.

I have been living with HIV for eight years.

It has taken me eight years and a global pandemic to be able to articulate those words confidently and put to paper.

Not a day has gone by that I didn’t feel shame, fear, guilt and often, anguish. And I have lived every single one of those days carrying a weight of humiliation, because that’s what society told me I should feel; that’s what our society told me I deserved. And I know that’s what society has probably whispered to you too, about people like me.

I allowed myself to think my shame was justified.

I accepted a life as a degenerate.

And I convinced myself I could never be worthy of love.

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For eight years, I dealt with my diagnosis in hiding and I grieved in silence.

I wish I could say that I chose this time to speak out, except, I feel that it’s this time we are in that chose me. During the pandemic, with nowhere else to look but the mirror, I found the courage to face myself and the fortitude to live honestly and openly.

Now, as I look ahead to what my post-COVID life could be, I refuse to return to the world as that same person I left it, hiding in the shadows of my shame.

For me, it was a devastating diagnosis, just months after moving to New York City from the small town of Winter Garden in Central Florida. I was 23 and wanted to start a new life in the Big Apple, as so many do.

It was the spring of 2013 and I had just officially come out as gay in a heartfelt Facebook post. I was free from hiding, so I thought, and was determined to finally live the life I had always wanted.

I felt like I could finally be me.

At the time, I noticed a campaign across New York City for HIV testing. Friends would go and get tested together in a mobile testing location outside of neighborhood bars and clubs in Hell’s Kitchen and the West Village.

I suppose it was "fashionable" to get tested and receive a negative test result but I certainly didn’t know of anyone living with HIV at the time. And there was no education, at least in my spheres, explaining what to do if you were to receive a positive result.

I was afraid to be seen doing any of this in public, for fear of what could be said about me if I was spotted taking an HIV test. So, out of curiosity, I got a simple over-the-counter, at-home self test. A few swabs to the gums and I'd have my results in 20 minutes, the packaging detailed.

It was as awful as you think it would be.

I stared at the test result endlessly and I felt completely numb and devoid of emotion.

Before I could process anything, my thoughts spiraled and I immediately internalized it all. I told myself I couldn't cry.

Would my life ever be the same?

Are my days on the planet numbered?

How could I tell my mom the nightmare of having a gay son was realized in this way?

The test result of HIV-positive sent me running back into the closet I had proudly come out of just weeks before.

And most notably, I remember feeling alone.

I hid my panic in public, whether at work or out with friends and I kept the news to myself for three days, not knowing who or how to tell anyone.

Those three days were excruciating and tiring.

By the end of that week, I broke down and finally shared the news separately with three of my closest friends. And while they all responded with love, there was an element of mystery and of course, fear — none of us knew how to deal with this. I remember vividly how one of those friends told me, “I really wish I knew how to help.”

“Me too,” I replied.

Wondering how long I had to live, I scheduled what felt like a barrage of appointments with doctors and specialists, more than I could count, to try and confirm my fate. Each visit and conversation became more definitive than the one before about my diagnosis.

There was no turning back.

This was going to be my new life.

But I didn't want anyone to know. What would they all think of me?

I didn't want anyone to know. What would they all think of me?

I finally landed in the care of a doctor who I will never forget. She was kind and patient and was the first to assure me that my life had only just begun.

Most of all, she told me that I wasn’t alone.

She explained to me what is now understood to be the concept of "U=U": "Undetectable = Untransmittable." Meaning, if the virus was brought down to “undetectable” levels in my body with proper medication and treatment, there would be no risk of me passing the virus to anybody else.

She also affirmed that I could live a long and normal life, contrary to the disastrous narrative in my mind.

In fact, in 2019, six years after my diagnosis, Dr. Anthony Fauci in 2019 would affirm this concept in a report and commentary, sharing that an overwhelming body of clinical evidence today firmly establishes “U=U” as scientifically sound. Clinical trials funded by the NIH now show that people living with HIV, who have an undetectable status by staying on prescribed medication, cannot transmit the virus to others.

This was and continues to be groundbreaking science. Just one pill every morning, a cocktail of three to four medicines in one, would maintain this undetectable status for me.

Incredibly, after being prescribed the proper medication, I was living undetectable just three months after my initial diagnosis and continue to be to this day.

But it was the living part that proved to be the greatest challenge of all.

In fact, my most painful memories are ones of experiences and interactions since those first doctor’s visits and countless blood draws, as I tried so desperately to resume a normal life.

Dating in particular, would never be the same. I remember the first time I shared the news with someone on a date: I earnestly thought there could be significant chemistry after a few dates, so, I felt that I had to tell them…

“Sorry, it’s just not my thing,” they eventually told me.

“That’s not something I’m really ready for,” another date said.

“What would my family think?” another responded.

I quickly mustered the courage to try a new strategy: Sharing my condition with a potential date straight away in a dating app chat, rather than waiting for the “right time” in-person.

“Yikes,” they quickly replied.

Minutes later we became unmatched on the app.

I would eventually stop dating altogether for a while because it hurt too much.

Living as an “other” in society among a community of individuals already cast out by society provides for its own set of ironies. It’s a unique experience that within the LGBTQ+ community especially, we memorialize those who have died from HIV/AIDS, but often discriminate against those who live with it.

As I reflect on that time in my life, bringing up my HIV status to a potential partner felt like a death sentence in and of itself. The truth is, there is never a “right time” to share and disclose a chronic illness like HIV with anyone, but to me, there are the right people to share it with.

My advice for those living with HIV in the shadows is to be deliberate with who you share your life with and that it’s OK to ask leading questions to help you clearly identify a safe space for sharing. And if you're so lucky to meet someone who finds you safe and trustworthy enough to confide in, I ask that you meet them with love, compassion and understanding.

We memorialize those who have died from HIV/AIDS, but often discriminate against those who live with it.

Dating over the years brought its own set of difficulties, but I found heartache and rejection all around me. I was shocked to find myself in situations where friends -- and even people I looked up to -- who would trade HIV or AIDS jokes and jabs in conversation so irresponsibly.

“Have fun on your trip! Don’t get AIDS over there,” I overheard once at brunch.

“I’m so hungover, but at least I don’t have AIDS,” came through on a group text.

“Where did your friend end up last night? He’s probably at an HIV clinic today I bet,” another giggled at a happy hour one evening.

When I wasn’t casually pointing out that AIDS and HIV were different things (as HIV can eventually lead to AIDS only if untreated), I would typically freeze up or try to change or exit the conversation. I became an expert at dodging stings and comments that made me feel less-than.

This constant stream of embarrassment, hurt, disappointment and rejection in love and in life was cutting. I felt as if the world gave me cue after cue that I was toxic and unwanted.

Looking back, it was never this virus that held me back from the life of normalcy I wanted, it seemed as though it was everyone around me that did. I buried myself deeper and deeper in shame and silence. The pain felt unbearable. For a time, I genuinely thought it would just be easier if I wasn’t part of this world anymore. And while I never acted on these negative thoughts, they have pervaded my daily life.

It was never this virus that held me back from the life of normalcy I wanted, it seemed as though it was everyone around me that did.

We have some work to do as a society to accept truth, science and reality when it comes to HIV stigma, misinformation and education. I hope that sharing experiences like mine more openly and candidly can spare whoever is dealt this card next of so much unnecessary hurt, pain and uncertainty.

As a journalist and producer, I’ve told countless people that their story is their superpower, but despite that mantra, I have been so afraid of and vexed by my own.

Ironically, it was quarantine that granted me an opportunity for healing and for change. While in solitude, I realized that my worth was in my story all along. And it took staring into the mirror for many, many months to re-learn how to embrace all that I am, to pull me out of a life of trauma and shame.

Now, on the eighth anniversary of my diagnosis, I'm sharing my truth. And I welcome the freedom it brings.

I often thought, I shouldn’t be here. But I am.

My reality is that I am not only alive, I am thriving.

But learning to thrive has been and continues to be a process.

And thriving, I’ve found too, is a choice.

You will never hear me say that I am, “HIV-positive.” You will always hear me say, “I am living with HIV.” Because living is what I’ve found I can do best. Living is what I owe to those who aren’t here with us anymore. Living is what I owe myself when I am in the darkest of places.

I refuse to sulk in shame any longer.

I’ve found that living is a duty.

And I’m choosing to celebrate life as long as I have life to live.

I’ve found that living is a duty. And I’m choosing to celebrate life as long as I have life to live.

UPDATE: Since this essay's publish, Dr. Anthony Fauci spoke one-on-one with Tony on HIV research, treatment and innovation live on Instagram. Watch the interview here:

If you or know someone you know is in crisis, call the National Suicide Prevention Lifeline: 1-800-273-TALK (8255) or contact the Crisis Text Line by texting HOME to 741741.

For LGBTQ+ youth in crisis, reach out to The Trevor Project and their TrevorLifeline: 1-866-488-7386 or by texting START to 678678.

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Open Access

Peer-reviewed

Research Article

Reshaping the narrative: Tracing the historical trajectory of HIV/AIDS, gay men, and public health in Sweden

Roles Conceptualization, Data curation, Formal analysis, Investigation, Methodology, Project administration, Writing – original draft, Writing – review & editing

* E-mail: [email protected]

Affiliation Department of Psychology and Social Work, Mid Sweden University, Östersund, Jämtland, Sweden

• Fredrik Nyman

• Published: February 22, 2024
• https://doi.org/10.1371/journal.pone.0298630
• Reader Comments

The human immunodeficiency virus (HIV) emerged as an endemic health crisis in the United States during the early 1980s. Initially labelled a “gay disease” due to its prevalence among gay men, the spread of HIV led to widespread fear and moral panic, as there was limited medical knowledge on preventing its transmission. While HIV is often associated with Sub-Saharan Africa, this article focuses on Sweden, a pioneering nation that became the first to achieve the remarkable Joint UNAIDS/WHO 90-90-90 continuum in addressing the epidemic. However, despite this significant milestone, the punitive legislation and attitudes prevalent in Sweden have had a counterproductive effect on curbing the virus’s spread. Drawing upon a comprehensive triangulation of various data and sources on the evolution of public policy in Sweden, this article argues for the urgent need to reduce stigma surrounding HIV and AIDS. By undertaking further measures to combat stigmatisation, we not only have the potential to prevent the spread of HIV but also significantly enhance the quality of life for individuals living with the virus. An essential step in this journey is to eliminate the legally-enforced mandatory disclosure of one’s HIV status, which would mark a tremendous victory for all those affected. With limited evidence to support the effectiveness of criminalisation and penal laws, no longer being viewed as criminals for non-disclosure would be a monumental achievement, positively transforming the lives of people living with HIV and fostering a more inclusive and supportive society.

Citation: Nyman F (2024) Reshaping the narrative: Tracing the historical trajectory of HIV/AIDS, gay men, and public health in Sweden. PLoS ONE 19(2): e0298630. https://doi.org/10.1371/journal.pone.0298630

Editor: Andrea Cioffi, University of Foggia: Universita degli Studi di Foggia, ITALY

Received: May 23, 2023; Accepted: January 26, 2024; Published: February 22, 2024

Copyright: © 2024 Fredrik Nyman. This is an open access article distributed under the terms of the Creative Commons Attribution License , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

Data Availability: The author confirms that the data supporting the findings of this study are available within the article and/or its supplementary materials.

Funding: The author(s) received no specific funding for this work.

Competing interests: The authors have declared that no competing interests exist.

Introduction

From deadly disease to chronic condition.

With mortality in the tens of millions, AIDS (acquired immunodeficiency syndrome) remains “one of the deadliest medical disasters in the past century” [ 1 ]. The syndrome came into recognition in 1981 as a result of a growing incidence of infections among young gay men, from which they failed to recover [ 2 ]. It was then discovered that the underlying cause was the human immunodeficiency virus, or HIV [ 3 , 4 ]. As the virus spread, it grew to become both a biological and a political issue [ 5 ]. The primary means through which HIV is transmitted include unprotected sexual intercourse, the usage of tainted blood products or unclean needles, and transmission from a mother to her child [ 6 , 7 ]. HIV and AIDS caused much fear and panic throughout the 1980s, as many people were dying with no immediate medical knowledge of how to prevent the syndrome or counteract the virus [ 8 , 9 ]. Misinformation about the virus and how it spreads led to common beliefs about persons living with HIV—mostly behavioural, e.g., promiscuity and immorality, which have no scientific basis yet have been used to fuel stigma and discrimination [ 10 – 12 ].

HIV is a retrovirus that works by reverse transcriptase, whereby an enzyme translates the single-stranded viral RNA present into double-stranded DNA; or in more simple terms, it is a virus that can add genetic information to the DNA of a host cell [ 6 , 7 ]. These characteristics and the rapid spread of the virus in the body make a cure very difficult. Yet, medical treatment has come a long way. In fact, antiretroviral therapies (ARTs) have proved so efficacious that after contracting HIV, progression to AIDS is increasingly rare in many parts of the world, especially in nations with access to antiretroviral therapy. [ 13 – 15 ]. With early treatment, what is named a “functional cure” is even theoretically possible [ 16 , 17 ]. This refers to a biological state in which the body can manage to suppress the virus without HIV inhibitors. In other words: medically, there have been enormous positive developments, so that nowadays HIV is primarily seen as a chronic condition and not as a virus that causes AIDS and leads to death. Yet despite the medical advancements [ 4 ], the history with which HIV and AIDS were discovered (and the ways people were informed and responded to this information) has its own story. These stories are of vast sociocultural significance, especially as they provide insights into understanding how people assign meaning to pathogens—and with what consequences. Culture, fear, and prejudice play major parts in this process [ 18 ], and it is not without reason that academic publishers across health research have devoted many volumes and special issues to HIV/AIDS throughout the years [ 19 , 20 ].

As many scholars previously have illustrated, people unremittingly tend to associate the AIDS pandemic with the area of Sub-Saharan Africa; countries like South Africa, Lesotho, Eswatini, Botswana, the Democratic Republic of Congo, Guinea Bissau, Gabon, and Cameroon more specifically, where HIV and AIDS are especially prevalent [ 5 , 21 , 22 ]. Back in 2018, an estimated 61 percent of new HIV infections occurred in this region, and as of 2020, more than two thirds of those living with HIV in the world reside in Africa [ 23 ]. South Africa explicitly has the largest population of people with HIV of any country in the world; at 7.92 million, which translates to 14 percent of the overall population [ 23 ]. Nguyen wrote that the contemporary “politics” of AIDS are not those of colonial times, “but they nevertheless demonstrate parallels in the way that foreign powers continue to intervene in Africa” [ 5 ]. No longer to ‘kill and conquer’—but instead to ensure that certain populations may live. As a humanitarian emergency, “AIDS now defines exception in epidemiological terms” [ 5 ]. The AIDS pandemic in Africa has not remained static, however; rather, it “has evolved and transformed over time” [ 24 ]. Iliffe’s [ 25 ] seminal and comprehensive history of AIDS in Africa provides not only examples of this, but the volume is also exemplary of the recent ‘historical turn’ in scholarly writing on HIV and AIDS [ 4 , 24 ]. That said, it is not the task of this article to reproduce Iliffe’s definitive account. This article is not about HIV and AIDS in Africa and the author abstains from detailing it much further beyond this point. Instead, the present study focuses on a Western European country—namely Sweden where, in epidemiological terms [ 26 – 28 ], HIV/AIDS has never been a problem to the same extent it has in Sub-Saharan Africa.

HIV in Sweden: A rationale for research

Annually, Sweden reports around 400 to 500 new HIV cases, predominantly encompassing instances where the infection was contracted prior to the individual’s migration to the country [ 29 , 30 ]. Nevertheless, Sweden holds the distinction of being the inaugural country to fulfil the Joint UNAIDS/WHO 90-90-90 continuum of HIV care objectives. By the conclusion of 2015, Sweden had achieved the following: 90 percent of HIV cases were diagnosed, 99.8 percent of individuals were connected to care, and 95 percent of those who had undergone a minimum of six months of antiretroviral treatment maintained a viral load below 50 copies/ml [ 28 ]. As a comparison, it is estimated that around 8,000 people live with HIV in Sweden [ 31 ]—which corresponds to approximately 69 cases per 100,000 inhabitants, or 0.07 per cent of the population—whereas UNAIDS [ 23 ] have estimated that over seven million people live with HIV in South Africa (the epicentre of the HIV/AIDS pandemic). Moreover, in this geographical region, 63 percent of new infections are women—with young women (aged 15 to 24 years) twice as likely as men of the same age to be living with HIV [ 23 ]. However, information about HIV/AIDS and its occurrence in Sweden has led to stigma and social stratification, especially when it comes to the public image and civil rights of gay men (and other Men who have Sex with Men) [ 7 , 9 ].

Historically speaking, and even now almost 40 years after the initial description of HIV, gay men are vastly overrepresented in the Western world when it comes to prevalence of HIV. While gay men in modern times are considered people at increased risk of acquiring HIV by the World Health Organization [ 32 ] with targeted and comprehensive services to follow, for many years this was not the case and it took a long time for gay men to acquire this position [ 8 , 9 , 33 , 34 ]. This is especially true for Sweden [ 35 , 36 ], where gay men failed to become one of the most prioritised (at-risk) prevention groups for many years; not until 2005, when the first National HIV/AIDS Strategy was drafted, was this truly enforced within legislation in Sweden [ 37 ]. First implemented in 2006, the National Strategy was then updated years later in 2017. The current strategy centres on three intentions: 1) evidence-based health promotion that targets both relevant ‘at-risk’ groups, as well as the general population; 2) early detection and treatment of HIV infections; 3) reducing the pervasive stigma associated with the virus is crucial, allowing individuals with HIV to openly share their status without fearing discrimination or mistreatment [ 37 ]. As of 2021, a motion to further develop the national strategy is currently being processed by the Swedish Parliament [ 38 ], which outlines a plan that seeks to achieve a 95-95-95 continuum of HIV care targets [ 39 ].

Taking this to heart, the aim of the study from which this article derives was to provide insights into how gay men have become known and depicted within bureaucracy and public policy in Sweden—as well as its related “artefacts” [ 40 , 41 ]—with the discovery and outbreak of HIV. In many high-income countries, HIV is more prevalent among Men who have Sex with Men (MSM) than among the general population [ 42 – 44 ]. Through triangulation of cross-checking data from multiple sources [ 45 ], this article specifically looks at how gay men historically became associated with HIV in Sweden, and what this has meant for them as a sexual minority. Not only in terms of their actual bodies, but also their agency and autonomy to use and access social space and civil liberties such as privacy and solidarity. To put it in Watney’s [ 46 ] terms: this article revisits the notion of how people —rather than viruses—are the true victims (casualties) of HIV prevention strategies. Following this historical reconsideration, the article takes a look at more recent events and scientific outputs on HIV and stigma reduction, where the author comes to argue that a further step in stopping the spread of HIV could be taken through reducing stigma; especially as stigma can discourage people from both getting tested and getting timely treatment.

This article engages with two vital questions: 1) How has the historical association of HIV with gay men (and other MSM) in Sweden impacted their representation in bureaucracy, public policy, and social space, and what are the implications for their agency, autonomy, and access to civil liberties? 2) How can stigma reduction interventions play their part in stopping the spread of HIV?

Study design and methods

This article stems from several sources, research data and material, and uses triangulation as a means of enhancing reliability and validity by cross-checking or cross-referencing the various data sets [ 45 ]. Triangulation helps to strengthen the validity and reliability of the findings by reducing biases and confirming or cross-verifying results through multiple perspectives and data sources. In this case, the article combines data from interviews, extensive archival research, and a rapid narrative review.

Firstly, the article partially draws from a mixed-methods case study conducted in Stockholm (Sweden) between 2014 and 2015, which sought to describe with an accuracy and sensitivity the actual public health policy-making process (focusing on HIV and AIDS legislation, specifically) from the perspectives of policy-makers and policy professionals, in their capacity as such [ 47 , 48 ]. The author met with professionals from seven various government agencies and non-profit organisations [ Table 1 ], and conducted a total of eight interviews (all in Swedish, with inserted quotes translated into English by the author) with self-selected members of staff. These persons were not interviewed in their capacity as private citizens but as spokespersons for their respective agency or organisation. The interviews centred on historical events apropos the process of public policy—not the interviewees’ personal actions, experiences, narratives, or opinions. Sensitive personal data (under GDPR) was neither asked for nor divulged or documented in any way. Nevertheless, while personal opinions were never divulged, all responses and quotes have still been anonymised as to maintain and protect personal integrity. In this article, the interview material features for contextual use to further inform the study. While the absence of personal narratives from persons living with HIV themselves perhaps seems odd, this was intentional, as the research aim remained clear from the start; i.e., to document the policy-making process from the perspectives of policy-makers and policy professionals (and thus, not citizens’ experiences of or responses to policy). The participants of this study did not give written consent for their interview data to be shared publicly, so due to the sensitive nature of the research, supporting data is not available. In ensuring the long-term accessibility and usability of the supporting data, the author adheres to best practices and standards for data preservation; such as those recommended by trusted organisations like DataCite and the Data Preservation Alliance for the Social Sciences (Data-PASS).

• PPT PowerPoint slide
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https://doi.org/10.1371/journal.pone.0298630.t001

Archival research

Secondly, for this article the author has also analysed relevant history apropos HIV and AIDS in Sweden through extensive document and archival research at the National Library of Sweden, in Stockholm (where non-digital data supporting this study are curated), as to provide an in-depth understanding and analysis of the subject matter [ 40 , 49 ]. The policy documents analysed were grounded in three Swedish Codes of Statutes: 1) the Act on Banning Sauna Clubs [ 50 ]; 2) the Communicable Diseases Act [ 51 – 53 ]; and 3) the Act on Blood Safety and Quality Regulations [ 54 – 56 ]. This process did not just involve studying the said Codes of Statutes themselves but also the overall policy-making process; the bureaucracy, legal documents, and ‘coloured’ papers [ 57 ] that envelops them [ 40 , 41 ] as well as the public debates that led to these Codes being enforced, including public media and newsprint articles published between 1981 and 2013 (primarily focusing on the largest newspapers in Sweden; Aftonbladet , Expressen , and Dagens Nyheter ). This was done to gain insights into the process and transition of legislation, as well as to unravel what type of knowledge of HIV itself—and the persons living with it—was used to allow for the bureaucracy inflicted upon gay men to take its shape. Whereas not always explicitly shown through citations or the equivalent, the documents and archival records employed in this study underpin the analysis.

Rapid narrative review

Thirdly, a rapid literature review [ 58 ] was performed, seeking to provide the best complimentary evidence in response to the topic at hand (alongside the interviews and archival research). An important aspect that differentiates rapid systematic reviews from traditional systematic reviews “is the more marked need to support production across the review’s lifecycle, from early question generation and method planning to development of the manuscript” [ 58 ]. The speed at which a systematic review is conducted does not necessarily indicate its quality. It is possible to complete the same amount of work with the same level of quality in a shorter or longer timeframe. However, it is important to note that rushing through a review may lead to compromises in the overall process. This can include overlooking important evidence and making errors in the assessment or synthesis of the available data. Therefore, rapid reviews should still adhere to the core principles of systematic reviews to ensure unbiased inclusion, assessment, and synthesis of studies.

Systematic reviews are considered the ‘gold standard’ for the location, appraisal and synthesis of research evidence in relation to a given question [ 59 ], especially as their explicit, transparent and rigorous methodology aims to synthesise findings from all relevant research that meets their inclusion criteria [ 60 ]. Rather than ‘systematic’, however, in the strict sense of the word, the literature review performed for this article draws inspiration from Mason and Sultzman [ 61 ] in making it a narrative review (yet taking a reasonable systematic approach to searching the literature and reporting it). Narrative reviews, as such, typically begin with a defined question to be addressed; however, they often involve a more general discussion of a subject without a specific hypothesis, adopting a topical approach instead. They cover a broader range of topics compared to systematic reviews, offering greater insights into questions where not all contextual factors are known in advance or where the historical context is considered relevant [ 62 ].

To obtain a comprehensive understanding of the literature, an extensive search was conducted using specific search terms in MEDLINE, PubMed Central, Scopus, and Web of Science. The search string employed was designed to encompass various aspects of the topic under investigation. The primary search string used was [[AIDS or HIV] AND [gay or homo* or MSM] AND [stigma or social* or emotion* or psychologic*]] AND [Sweden[Title] OR Swedish[Title]]. To ensure a more inclusive search, a slightly broader search key was also utilised: [MSM [AIDS or HIV] Sweden]. This expanded search string aimed to capture a wider range of relevant articles and information. In addition to the electronic searches, a thorough examination of the references cited in the identified articles was conducted. This approach, known as backward and forward citation searching, allows for the discovery of additional relevant literature [ 63 , 64 ]. Supplementary sources, including semi-scientific and official documents, were also sought to enhance the breadth of the research. Google Scholar, LIBRIS (the Swedish national union catalogue maintained by the National Library of Sweden), and the Swedish digital repository Digitala Vetenskapliga Arkivet (DiVA) were consulted. The latter platform provides access to publications from Swedish universities, university colleges, public authorities, research institutes, and museums, thereby facilitating the retrieval of openly available materials. By employing these comprehensive search strategies and utilising multiple resources, an extensive range of literature was gathered to establish a solid foundation for the study.

The search yielded a total of 11,517 individual records, out of which 372 were identified as potentially relevant [ Fig 1 ]. From these, a total of 96 studies were found to meet the inclusion criteria. Due to the large number of included studies and the extensive volume of data, it became necessary to systematically categorise the results. This review focuses on studies that have examined context-specific historical events and culturally influenced processes related to HIV and AIDS, as well as the heightened risks faced by gay men (or MSM, more broadly) in Sweden over the years. Consequently, the author selected 30 studies for inclusion in this study. Additionally, 19 other sources were utilised (including semi-scientific materials) such as book chapters, dissertations, and policy reports (thus, in total 49 records; Table 2 ). These additional sources were incorporated because the scientific literature often lacked descriptions of pertinent historical events, necessitating the use of supplementary resources to provide a comprehensive contextual understanding. Data sharing is not applicable to this article as no new data were created or analysed in this study.

https://doi.org/10.1371/journal.pone.0298630.g001

https://doi.org/10.1371/journal.pone.0298630.t002

Through the use of a thematic analysis [ 65 ] of the interview data, archival research, and retrieved literature records (in triangulation), three overarching themes were identified. These have been named as follows: 1) From a limited problem to a disease dangerous to society , 2) Gay men as ‘outliers’ , and 3) A counterproductive approach . The first theme delves into the comprehensive evolution of HIV in Sweden, tracing its progression from being perceived as a limited issue primarily affecting gay men) and MSM, more broadly) to a disease that posed a significant threat to society as a whole, thereby warranting public concern. Moving on, the second theme sheds light on the complex portrayal of individuals with HIV and AIDS in Sweden, showcasing a dual perspective where they are recognised as victims of a deadly illness, yet simultaneously depicted as potential dangers to those unaffected by the virus. Lastly, the third theme explores the counterproductive approach specific to Sweden, wherein individuals living with HIV have not only faced blame for their condition but have also been burdened with sole responsibility for preventing its further transmission. These three themes are interconnected, highlighting the importance of reducing stigma to effectively curb the spread of HIV.

From a limited problem to a disease dangerous to society

The first case of HIV in Sweden was officially diagnosed in August 1982. Like the first cases found in North America the patient was a gay man, named Roar Klingenberg [ 34 ]. Klingenberg was hospitalised soon after disclosure and died two years later in September 1984 [ 34 ]. As history shows, upon the appearance of HIV in Sweden public opinion wavered between trust and mistrust in the medical community’s capacity to keep the ( potential ) epidemic under control [ 9 , 34 , 66 ]. Public media outlets were also divided—between those who expressed faith in medical science and those who showed distinct distrust towards it, much due to how the rendered projections of the actual quantity of HIV infections in Sweden, at the time, were characterised by significant uncertainty [ 7 , 67 – 69 ]. Even though medical experts were still vastly unsure of what was causing the syndrome (AIDS), or how it was transmitted, clear signs of optimism were still expressed in some segments of Sweden. Various newsprints urged people not to give in to despair, stating that the medical expertise was doing everything they could to come up with a potential solution [ 9 , 34 , 67 , 70 ]. By the year-end of 1983 and in early 1984, the Swedish National Board of Health and Welfare went out with the announcement that the risk of an AIDS epidemic breaking out in Sweden had now ‘officially’ passed. This announcement was vastly criticised and later had to be retracted, however [ 34 , 70 ]. Yet it does show, as Ljung [ 67 ] argued, that the Swedish authorities did not expect AIDS to develop into the societal issue it in retrospect did. Thus, in summary, the early epoch in Sweden was distinguished by HIV and AIDS being seen as a relatively defined and limited problem [ 34 , 68 , 71 – 73 ] that would solve itself without any interference. This would explain the political decision of not ‘combating’ the potential epidemic with nothing but limited resources and inputs [ 74 , 75 ]—which is not to be considered characteristic of Sweden, but rather, something archetypical of Western Europe altogether [ 44 , 74 , 76 – 78 ].

This consensus changed, however, in February 1985, when a young boy suffering from haemophilia contracted HIV from a unit of blood plasma given to him at a Swedish hospital. In response to this incidence, Swedish Federation for Lesbian, Gay, Bisexual and Transgender Rights (RFSL) urged gay and bisexual men not to donate blood, and as documented, Sweden was the only place where such approbation took place [ 8 , 9 , 68 , 69 , 73 , 79 ]. The gay federations in the rest of Europe immediately rejected such ideas, as they saw it as nothing but yet another act of discrimination where biological phenomena were used for moralising purposes in segregating sexual minorities [ 9 , 68 , 72 , 80 , 81 ]. The Swedish National Board of Health and Welfare hesitated for a long time before they decided on how to act, and even expressed lack of vital medical knowledge needed to make such a call. As seen reflected in the legislation and policy documents from back then [ 66 , 69 , 71 , 82 ], which the author had access to through the archives at the National Library of Sweden (and also managed to elaborate on in interviews with various policy professionals), at first, the National Board was afraid of turning blood donors away. Thus, they chose to act rather passively by not defining any specific groups being at risk. However, the National Board later changed direction, where they later started the said culling of previous ‘at-risk groups’—stating that these individuals were no longer welcome as blood donors. This did not, however, refer to gay or bisexual men explicitly, but rather, sexual behaviours with multiple partners, which were a relatively small amount of people [ 9 , 34 ]. Following this, the National Board later implemented a strategy that involved directives formulated as to restrict access even further, with the definition of ‘risk’ now including all gay and bisexual men who have had sex after 1979 [ 9 ].

This deed could, Ljung argued [ 67 ], be seen as a way of associating the risks of blood transfusion with the ‘at-risk’ groups believed to be causing the spread of the virus. HIV was now considered a disease that originated from gay and bisexual men [ 9 , 34 , 68 , 71 , 83 ], and thus a medical condition that could easily be transmitted to the rest of society if contact with these said groups was made. It did not take long before HIV/AIDS was deemed worthy of national attention due to the revelation that masses outside of the previous named ‘at-risk’ groups were now in danger of being affected, as well. With this, AIDS was no longer the enigmatic disease only befalling ‘the others’—but something that concerned society at large and demands of immediate action was soon raised across the nation. This was reinforced by the fact that the number of documented HIV infections in Sweden almost tripled—from 324 to 968 [ 70 ]—partially due to newfound ways of diagnosing whether someone was affected by HIV or not [ 9 , 73 ]. AIDS increased as a newsprint topic around the same time, with papers headlining it all as the ‘new threat’ while also personating the groups vastly associated with the syndrome—i.e., gay and bisexual men; sex workers; People Who Inject Drugs (PWID); African migrants; and people who had contracted AIDS through blood products [ 7 , 34 , 67 ]. However, it should also be noted that a substantial hetero-sexualisation of AIDS had started to occur [ 9 , 34 , 72 ], where prevalence among heterosexual men and women had now increased. With AIDS now being of public concern, no one was deemed safe from infection.

Gay men as ‘outliers’

Because of this, people living with HIV and AIDS came to be associated with a rather ambivalent image. On one hand, they were seen and acknowledged as unfortunate victims of a painful and deadly disease—on the other; they were construed as dangerous perpetrators, threatening those still unaffected by the virus [ 9 , 67 , 70 , 71 , 83 ]. Fear is also seen reflected in metaphors people have used for AIDS, such as ‘war’, a gay ‘plague’ or ‘cancer’, ‘hell’ or even ‘the wrath of God’ [ 70 , 84 , 85 ], which sometimes included a moral charge against those who had contracted HIV and were already stigmatised (such as gay men and PWID). In Sweden, drastic measures of all sorts were suggested; from implementing “sexual passports” (stating the health condition and HIV status of its carrier, which needed to be renewed regularly) to confining people to special ‘camps’ or tattooing them in the axilla, aiming for simple ways to identify persons suspected of living with HIV or AIDS [ 67 ].

Needless to say, none of these proposals were enacted by the Swedish Parliament. However, that said, a Swedish Act banning gay sauna clubs was voted through. As Bérubé [ 86 ] wrote, gay baths and bars are integral parts of gay political history. They contradicted the stigmas of gay people as “sinners, criminals, and diseased”—giving them a sense of pride in themselves and their sexuality [ 86 ]. In the United States, gay baths and bars became “the first stages of a movement of civil rights” [ 87 ] for gay people. Before there were any openly gay political leaders or organisations, “pioneers” (as called) spontaneously established gay bathhouses/saunas and gay/lesbian bars; risking arrest and jail sentences, even losing their families or their jobs, as well as putting themselves in potential danger, in order to transform public bars and baths into safety zones “where it was safe to be gay” [ 86 ]. The gay bathhouses therefore represent a major success in a political struggle to overcome social isolation and to be able to develop a sense of community and pride; a struggle that has been going on for centuries, and still must be won on many areas [ 86 , 87 ]. It was during the late nineteenth and twentieth centuries that public baths and health resorts started to transform into the gay institutions they have come to represent today. Back in these days, all sexual acts between men were seen as ‘crimes against nature’; that is, they were considered and treated as public and illegal offences [ 88 ]. Thus, men having sex with other men had no legal right to privacy and were therefore forced to become sexual ‘outlaws’ [ 86 ]. In response to this, gay men became experts “at stealing moments of privacy” [ 87 ] and finding so-called ‘cracks’ in society, where they could meet without risk of getting caught, or judged. This is comparable to what Wright [ 89 ] called “refuse spaces”; unwittingly ignored sites of varying shapes and sizes, or peripheral areas on the margins of cities. In general, the proposition of banning gay bathhouses and sauna clubs was not just seen as an attack on the actual venues, but also on the gay community at large.

According to one interviewee—a delegate of Posithiva Gruppen (PG)—this certain Act that banned sauna clubs was the result of a demoralisation of the gay scene, initiated by the Swedish press. As the author was informed, it all began in October 1986 when a man named Peter Bratt, who was working at Dagens Nyheter (a major Swedish daily newspaper), started to publish a series of newsprint articles.

PG : Many remember it to this day. It was due to some articles published by Peter Bratt, a reporter at Dagens Nyheter [DN]. These articles basically led to the legislation of the Act on Banning of Sauna Clubs. Bratt visited Manhattan [an old cinema located at Hantverkargatan in Stockholm] and was allegedly shocked over what people were up to. It was rather upsetting what he wrote, even to this day. Well, DN acted quite disturbingly in overall during the 1980s, but Bratt especially. In fact, I remember the exact date; it was published on 10 th October 1986.

Author : And it was a big coverage?

PG : Oh yeah, it was huge. And it basically… it was after it was published that the Act on Banning of Sauna Clubs was set into motion. It was implemented only one year later.

Author : So, he was not involved, so to say, “officially” … yet it was based on and emerged out of something he wrote, and published?

PG : Yes, that is exactly how it was. No, Bratt was just a reporter working at DN. He was quite young back then. And AIDS was huge at the time—when it had just erupted in Sweden. He is quite an interesting person, though. Basically, the whole legislation is based on his… not interviews, but he was there, kind of doing “undercover work” at the gay place, you know.

In this way, gay men, who were most often affected by HIV, were portrayed in a demoralised way, which led Swedish authorities to focus on protecting society at large against those individuals that were seen (and portrayed) as spreading the virus. The changes within the Communicable Diseases Act reflected a similar shift in focus. This legislation existed before HIV and AIDS were discovered, but was modified in response, first in 1988 [ 51 , 52 ]. The notorious result was an Act which 1) allowed for persons living with HIV to be put under indefinite isolation; 2) forced a statuary duty upon them, urging them to inform their sexual partners about their HIV status; and 3) obliged their physicians to without delay contact the health authorities every time a new case of HIV was discovered [ 71 , 90 , 91 ]. In sum, the outcome was that ‘at-risk groups’ were directly held responsible for their own infection. They were set apart from those persons seen as ‘innocently infected’; that is, those who contracted the disease through blood products, blood transfusions or from birth [ 7 ]. This also becomes clear in the following quote from the Swedish National Commission on AIDS:

• There is a reason why HIV infection has spread among certain groups, above all homosexual men and injection drug abusers. It is due to a certain kind of behaviour—multiple partners and, for example, anal sex or drug injection with contaminated needles—that the infection has spread among these groups. And one must of course distinguish between those who have been infected by blood or blood products and those infected by risk behaviour. Although it is behaviour, not group identity in itself, that aggravates the risk of infection, we have elected to speak in terms of groups at risk. This concept has the advantage of leading to a classification of target groups [ 82 ].

The Act was soon widely known for its harsh nature and regulations, which were unique for Sweden at the time and not found elsewhere in the world. Not only did the Act violate the recommendations laid forward by the WHO but also those of the Council of Europe; all built on the free will and solidarity of both citizens and non-citizens [ 36 , 68 , 71 , 72 , 90 ].

As the attitude towards HIV and AIDS in Sweden changed during the 1990s, so did the need and wish for a more attentive Act showing significant concern for persons living with HIV and their life situation. Thus, the Government of Sweden issued (after severe pressure from the gay movement and various non-profit organisations) a re-valuation of the legislation [ 36 , 70 , 90 ]. The Act on Banning Sauna Clubs was officially abolished on 7 th April 2004 following the implementation of the currently actualised Communicable Diseases Act [ 91 ]. This was eagerly anticipated, much appreciated and welcomed by the various NGOs engaged in HIV prevention and sexual health across Sweden [ 35 , 36 ]; largely due to its alleged counterproductive nature, as health authorities in Sweden purportedly understood that it would hold no practical significance in curbing the spread of infection. Instead, authorities aimed to demonstrate political resolve, mirroring how the law was expedited amid a debate marked by apprehension about the unfamiliar and revelations about recent discoveries regarding HIV and AIDS [ 70 , 71 ]. In fact, right from the outset, NGOs like RFSL, RFSU, and Venhälsan (a sexual health clinic in Stockholm for Men who have Sex with Men) had asserted that imposing a ban on sauna clubs would yield counterproductive results. They contended that the activities prevalent within sauna clubs would simply relocate to other settings, complicating efforts to disseminate information about infection risks [ 70 ]. Despite articulating these concerns, their input was unfortunately disregarded by health authorities [ 64 , 70 , 71 ]. Even now, concrete statistics remain elusive regarding the actual number of individuals in Sweden who contracted HIV at a gay sauna club [ 71 ]. This perhaps underscores the moralistic undertones prevalent during a period characterised by substantial uncertainty [ 9 , 34 , 67 ].

That said, what is of analytical interest here, especially with regards to the Act on Banning Sauna Clubs, is the aspect of time—and the time it takes for bureaucratic implementation to actually commence. Hage wrote that there is politics around “what waiting entails” [ 92 ]. Waiting defines class and status relations in, as Hage phrased it, “the very obvious sense of ‘who waits for whom’” [ 92 ]. With regards to the Act on Banning Sauna Clubs, it only took four months for the proposition [ 93 ] to go from being just that, into becoming a vigorous Act within Swedish legislation. However, when it came to the discussion of a potential withdrawal of the Act, the process spanned over two decades. Still, within the most recent Communicable Diseases Act [ 53 ], there is still a ‘duty to inform’ scripted and persons living with HIV who do not submit to the duty-to-inform may be put under coercive isolation.

At the same time, an extraordinary case surfaced in 1997 where an African/American man residing in Helsinki (Finland), was suspected of having infected several Finnish women with HIV [ 67 , 70 ]. Soon following, revenge became a recurring theme in Swedish media where persons living with HIV or AIDS were depicted as vastly vindictive individuals who knowingly transmitted the virus to other people [ 9 , 34 , 67 , 71 , 72 ]. However, while cases of persons who intentionally infected others with HIV made the news in several Western European countries [ 94 , 95 ] it has never been examined whether these reports have influenced people’s attitudes about others with HIV. Moreover, in Sweden specifically, these cases have tended to revolve around heterosexual men [ 7 , 67 , 71 , 96 , 97 ] spreading the virus to women, while HIV is predominantly found in gay men and other MSM. As such, while intentional transmission of HIV has been deemed a criminal act without bias, at large such policies have mostly come to affect the MSM population—or even persons completely unaware of their HIV status [ 64 ]. This is why criminalisation for long has been seen as counterproductive by NGOs in Sweden, as it ultimately comes to affect the wrong persons [ 34 – 36 , 67 , 98 – 100 ].

Interestingly, the concept and social category of ‘Men who have Sex with Men’ (MSM) has been in use in HIV-related literature since at least the end of the 1980s, and the beginning of the 1990s, whereas the acronym of ‘MSM’ was coined and implemented around year 1994 [ 8 , 101 – 103 ]. These terms “held the promise of reducing AIDS stigma” [ 102 ], which over the years had become increasingly attached to primarily gay men, but also lesbian women, and users of the terms “helped to promulgate these now-familiar acronyms” [ 102 ]. Yet scholars are troubled by how the acronyms are applied, since it seems, they have come to “displace rather than coincide” [ 102 ] with information about sexual identity. From available documentation, Boellstorff [ 104 ] stated that it seems clear that the category of MSM, like the ‘homosexual’ [ 105 ], did not originate from any household or bar, park or disco (et cetera), but instead through scientific and bureaucratic coinage [ 104 ]. It was created to signify behaviour without identify, such as in the phrase: men who have sex with men but do not identify as gay . The category did not emerge out of pride marches or mass media, but rather, in response to a need to analytically describe men (for purposes of HIV/AIDS surveillance and behaviour change) who engaged in intercourse with other men, but who did not identify as gay [ 104 ]. According to Boellstorff, the MSM acronym was meant to invoke behaviour in complete distinction from identity—as in an epidemiological imaginary, behaviour could stand alone. That is, a gay-identified man who lives in celibate is not at risk for sexual transmission of HIV, while a straight-identified man who has had sex with other men, in fact, is . He is offered no protection from infection whatsoever by the mere fact of his self-identification; “it is not who you are, it is what you do” that matters [ 104 ]. However, with the legislation in Sweden, a monogamous gay man is seen and defined as in higher risk of contracting HIV than a ‘straight’ man with multiple sexual partners. Even when this gay man is HIV-negative and in a relationship with another HIV-negative man, both would be considered ‘risky’ due to gay men being so vastly overrepresented when it comes to cases of HIV. Also, sex among homosexuals is not distinguished from another but always classified as ‘unsafe’; which is to say, with the current legislation, there is nothing called ‘safe sex between homosexual men’ [ 7 , 9 , 70 – 72 ].

As a result of these processes, gay men have become portrayed as scapegoats instead of being treated as a particularly “hard-hit group” [ 7 ]. Moreover, they are also held responsible for preventing the spread of HIV [ 7 , 9 , 34 , 35 , 67 ].

A counterproductive approach

Recurring in Swedish history is the description of passing on the virus (HIV) as a criminal act. Persons living with HIV are not only blamed for having it, but also given the sole responsibility to prevent the spread. An example of opinion from this debate can be found in Dagens Nyheter (DN) from 2011, where Christer Winbäck (a trained nurse and a former Member of Parliament for the Swedish Liberal Party) commented on the present-day situation of persons living with HIV in relation to Swedish legislation, civic duties and responsibilities, as well as potential penalties:

HIV is undeniably a severe illness, and it is crucial to establish appropriate measures to address it. Consideration should be given to situations where individuals are unaware of their infection, as well as cases where transmission is intentional, warranting stricter penalties. Granting impunity without scrutiny would provide everyone with the option to claim ignorance. However, a careful evaluation must be conducted to determine the likelihood of the person’s knowledge regarding their HIV status [ 106 ].

Winbäck [ 106 ] points to several things with his statement. Firstly, he refuses to abolish HIV transmission as a criminal offence, and this with no regard to whether the person in question knows about their condition. That is, Winbäck sees HIV as such a severe predicament that it should be assigned great penalties, if set health regulations are not met or upheld. Also, in how he discarded of a potential introduction of impunity, Winbäck seems to believe that persons living with HIV would cease to assume responsibility for their conditions in case it would not be a criminal act of doing so. That is, according to Winbäck, Swedish legislation at large is in great need of a directive which states that persons living with HIV can be severely punished if they would not take their illness in full earnest. Since 1985, persons with HIV in Sweden have been obligated by law to disclose their medical status to potential sexual partners [i.e., ‘duty to inform’], with penalties for non-compliance [ 70 , 90 ]. This legislation [ 51 – 53 ] allows for Swedish health authorities to request for mandatory detention and isolation of an individual if there are compelling reasons to believe that the person will not adhere to the rules of conduct, posing a tangible risk of infection to others [ 35 – 36 ]. By supporting a ‘duty to inform’ Winbäck is not only displacing the institutional responsibility befitting a state, but he also strives to maintain uneven and heteronormative structures which dissolve the aspects of equality when it comes to living with HIV or AIDS. Structures which hold some people liable for the misfortune of the ‘innocent’ ones, while also refusing to acknowledge the same groups as the victims or sufferers they truly are [ 35 , 36 , 71 , 72 , 91 , 107 ].

Debates on whether it is time to re-valuate the Communicable Diseases Act occur several times a year and especially in adjacent to Stockholm Pride and the World AIDS Day. In fact, RFSL and Swedish Association for Sexuality Education (RFSU) have for a long time urged Swedish legislators to address the issues of the ‘duty to inform’, in hopes of breaking the stigma bound to HIV and thus improve prevention work [ 35 , 36 , 108 , 109 ]. What these organisations hope to achieve, allegedly, is a society where more people dare to test and screen themselves for HIV, and thus, take further responsibility in practicing safer sex. Looking to the present-day situation, those who contract HIV in Sweden have, in most cases, gotten it from someone abroad and/or by someone who does not know they are a carrier [ 7 , 72 , 110 , 111 ]. However, as Veronica Palm (a former Member of Parliament for the Swedish Social Democrats) has said, the current legislation risks ending up contra-productive, especially considering how it preserves a stigmatic image of persons living with HIV rather than working on facilitating and improving their position within Swedish society [ 91 ]. Also, as Case and colleagues demonstrated [ 112 ], studies show that prosecution of HIV transmission does, in fact, not reduce the spread of HIV, which has also been pointed out by RFSL, RFSU and other NGOs. As such, criminalisation acts yet as another proof of contra-productive legislation, in how it continues to focus on the wrong masses [ 35 ]. Moreover, as stated in the joint policy recommendation by RFSU, RFSL, and HIV-Sweden [ 36 ], the issues are not only found in the Communicable Diseases Act but also in Swedish Criminal Code.

The detrimental impact of the current situation extends beyond individuals living with HIV. We hold a strong conviction that specific clauses within the Communicable Diseases Act, such as the “duty to inform”, when coupled with provisions from the Swedish Criminal Code, detrimentally impact HIV prevention efforts across Sweden and additionally contribute to the stigmatisation of individuals living with HIV. We recognise that the Communicable Diseases Act was established with good intentions, aiming to prevent the spread of HIV and uphold equal rights. However, there are sections within it that do not align well with the National Prevention Strategy or create a sense of safety and comfort for individuals living with HIV to openly disclose their status. The time has come for a thorough review and evaluation of the Communicable Diseases Act. This audit should also encompass an examination of the Swedish Criminal Code, which governs the transmission of HIV between individuals [ 36 ].

Transmitting HIV to another person, or exposing a person to HIV, is not an offense in the Swedish Criminal Code in and of itself. Instead, people may be prosecuted and sentenced for various violent crimes (i.e., assault). The act itself is not sufficient, however; prosecutors must illustrate that the person acted with intent or with negligence [ 36 ]. With respect to the Swedish National HIV/AIDS Strategy, it states that stigma and discrimination related to HIV have to be minimised, and that persons with HIV can talk about their status without fear of being treated differently [ 37 ]. The counter-productivity of the ‘duty to inform’ has previously been further enlightened by RFSU, in how they said that it risks ‘lulling’ people in a false sense of security [ 34 , 67 , 68 , 71 – 73 , 91 , 98 , 110 ]. That is, if persons living with HIV are obliged by law to tell their sexual partners about their HIV status, how are people supposed to react when their partners do not say anything? They might assume that the person in question is HIV-negative, even though they can as easily be unaware of their HIV status. Further examples of this were given in an interview with a delegate of RFSU:

With the advancement of our understanding regarding infectivity, individuals living with HIV now have the option to request the removal of [the duty to inform] from their general practitioner. The Communicable Diseases Act encompasses various provisions, and the so-called ‘duty’ is just one of them. However, it is now possible to have this obligation waived on an individual basis, provided that the person is undergoing effective treatment and maintains undetectable levels of the virus. Nevertheless, at RFSU, we have always held a critical stance towards this supposed ‘duty to inform,’ as we believe it can create a false sense of security. We now know that those who are aware of their HIV status are not the ones posing a significant risk of transmission; rather, it is those who are unaware. Hence, we argue that the so-called ‘duty to inform’ is essentially meaningless. We strongly believe that removing this obligation would be a prudent course of action, echoing the wise words of someone from long ago: “Responsibility is not divided 50/50, but rather 100/100.” We do not deny the immense responsibility borne by individuals living with HIV. We recognise that many of them take it incredibly seriously. However, at RFSU, we refuse to accept that a specific provision within the Communicable Diseases Act would effectively prevent the spread of HIV.

Medical science has made immense progress when it comes to preventing HIV from developing into AIDS, turning this deadly disease to a chronic condition [ 14 ]. Back in 2008, the Swiss National Commission on AIDS caused quite a stir when they published some recent research findings. The results indicated that persons living with HIV who were under effective anti-retroviral treatment (ART) showed less risk of infection and should by that fact be considered sexually non-infectious [ 113 ]. This was later presented and implemented by the Swedish Institute for Infectious Disease Control ( Smittskyddsinstitutet , henceforth SMI) in 2013, and the National Board of Health and Welfare quickly followed in how they announced that persons living with HIV could now get their ‘duty to inform’ removed, if they were under effective treatment and did not live with any other sexually transmitted diseases [ 31 , 114 ]. The Swedish Institute for Infectious Disease Control later merged with the Public Health Agency of Sweden (FoHM) in 2014. As SMI confirmed in their investigation from back then, the risk of transmission is minimal if the person in question is under effective ART. This estimation concerns anal, oral, and vaginal intercourse, and it applies regardless of gender, sexual identity, or type of sexual contact [ 114 ]. If ART is to be considered effective and stabilised, it must follow certain criteria. Firstly, the virus level inside the blood plasma must continuously be lower than 50 copies per ml (as the virus level is considered immeasurable if it falls under 50 copies), which must have been verified at two consecutive occasions within a three to six months interval [ 114 ]. Also, the patient in question must be deemed to have a continuously high treatment-compliance. As described in the previous quote from the interview with RFSU, the interpretation of the law in Sweden changed in 2013–2014, much in response to these findings. The treating physician is allowed to exempt the HIV-positive person from the duty-to-inform (about one’s HIV status) in sexual contacts, provided that they 1) have an undetectable plasma viral load; 2) are therapy compliant; and 3) are not known to have another sexually transmitted disease [ 110 , 111 , 115 , 116 ]. Whereas i.e., the US Centers for Disease Prevention and Control uses the cut-off of <200 copies for viral load to be considered “undetectable”, since 2018, Swedish law utilises the cut-off of <50 copies after an HIV-positive man was found not guilty of danger to others in the Supreme Court of Sweden. The man in question had had unprotected sex with his partner, but was found not guilty due to his undetectable plasma viral load and therapy compliance [ 38 ]. In sum, there is a noticeable loosening in the approach towards the duty-to-inform [ Table 3 ]. Albeit not so much, because it appears counterproductive; it being considered less necessary due to current medical developments.

https://doi.org/10.1371/journal.pone.0298630.t003

The importance of stigma reduction

HIV/AIDS has been a persistent global health challenge, but advancements in medical knowledge and treatments have helped to reduce the stigma associated with the virus. However, despite progress, stigma continues to impact the lives of individuals living with HIV. Apropos the historical trajectory, this article also seeks to address the role of stigma in HIV prevention and treatment, highlighting its effects on testing, treatment adherence, and the use of pre-exposure prophylaxis (PrEP). Stigma surrounding PrEP users, particularly within the gay community, can discourage individuals from using this effective preventive measure. Furthermore, disclosure of HIV status remains a concern due to fears of rejection or mistreatment. The detrimental effects of stigma on the mental, sexual, and physical well-being of people living with HIV are evident [ 117 – 119 ], highlighting the significance of diminishing stigma as a dual approach—limiting the virus’s transmission and enhancing the well-being of those affected by it [ 119 – 121 ]. Despite the limited research on interventions aimed at diminishing HIV stigma in both Sweden and worldwide, it is imperative to tackle stigma across different tiers, encompassing peer support networks, training for healthcare providers, and policy reforms. This comprehensive approach is vital for attaining improved health results and fostering inclusiveness for individuals living with HIV.

Intrinsically, it may be that a further step in preventing the spread of HIV could be taken through stigma reduction. As this article demonstrates, stigma can discourage people from getting tested and receiving timely treatment. Moreover, acquiring HIV can be prevented by as much as 99 percent when a person takes a PrEP pill (pre-exposure prophylaxis) every day [ 111 ]—but again, stigma can easily emerge. Namely, PrEP users are commonly stereotyped as sexually irresponsible, promiscuous, and immoral individuals [ 122 ] who use the drugs as a ‘license’ or free pass to have casual unprotected sex. For example, the term “Truvada Whore” (after Truvada , a brand of emtricitabine/tenofovir) quickly went viral and was widely used in the United States to refer to a man who has sex with other men and uses PrEP as internal HIV prevention. Other equally effective PrEP medications available are Descovy (TAF/FTC) and cabotegravir injections (Apretude). However, while the term came to be as a way of shaming gay men, it was later appropriated by the gay movement and used as a way of expressing agency [ 123 , 124 ]. That said, the term has now grown rather obsolete and is rarely heard or used anymore. Yet nonetheless, such stigmas can lead to people being less willing to using PrEP in the first place, or less faithful in continuously taking it [ 111 , 122 , 125 ].

Although the new medical advancements and knowledge about HIV/AIDS seem to have led to less stigma than previously experienced [ 126 , 127 ], the stigmas that permeate the virus have not been completely eliminated. More recent studies from Sweden [ 115 , 116 , 128 , 129 ] suggest that persons living with HIV are still selective in their disclosures for fear of being defined by others primarily by one’s HIV status, or of being rejected or abandoned by sexual partners, or even badly treated by health care staff [ 117 , 118 , 130 ]. In fact, as Carlsson-Lalloo and colleagues document in their study [ 115 ], people with HIV themselves struggled to believe that with the virus level being low, so is the risk for transmission.

Tobias Karlsson, a Swedish professional dancer who publicly disclosed his HIV status in 2019, expressed something similar in an interview with LGBTQIA+ magazine QX , all while expressing his surprise for how widespread the ignorance is apropos how medical advancements have actually transformed the illness experience:

I had no idea that [when the virus level is so low] there is no risk for transmission during sex … When one says that one is ‘undetectable’; when the virus level is immeasurable, people are fine with it. You are no longer considered ill and cannot pass on the virus, where having sex is considered safe, i.e., being HIV-positive under medication and with an undetectable virus level. And you no longer have to disclose your HIV status to a potential sexual partner. [ 131 ]

Yet hearing that one’s viral load is suppressed and that the risk of transmission is even ‘effectively zero’ (as Undetectable = Untransmittable ), simultaneously as one attains a deeper understanding of the individual infectivity rate and risk of transmission, “seems to reduce feelings of being contagious” [ 115 ]—thereby also effectively preventing experiences of self-stigma. However, within the gay community itself, stigma is largely experienced and affects people not only when they personally face negative judgments—but also when they hear or read negative thoughts and opinions about other persons living with HIV [ 128 , 129 , 132 ]. Outside the gay community, gay men living with HIV are faced with the intersectional stigma of being a sexual minority, as well as having HIV.

Stigma negatively affects the mental, sexual, and physical well-being of persons living with HIV. Improving their health-related quality of life is, therefore, cited as “the fourth 90” that should be achieved [ 132 ] within the Joint UNAIDS/WHO continuum of HIV care targets. Hence, reducing stigma would serve the dual purpose of reducing the spread of HIV and improving the quality of life of persons living with the virus. However, no research has yet been done on interventions to reduce HIV stigma in Sweden; and international research within this area is also very limited [ 11 , 12 , 107 ]. Needless to say, there is still a great deal of improvement to be achieved in this regard. The available research suggests, among other things, that reducing stigma can be done at different levels—micro, mezzo, and macro. For example, at micro level self-stigma can be countered through various peer-support systems; at health care level (macro), interventions can target health-care providers explicitly [ 107 , 130 , 132 ]. At policy level (mezzo), enacting decriminalised HIV legislation is not only recommended—but also directly necessary, if the good levels of quality of life and self-rated health for persons with HIV are to improve at all.

This article delves into a myriad of crucial dimensions pertaining to HIV disclosure, sexual well-being, and the broader societal context. Notably, it casts a spotlight on Sweden; a nation that achieved the pioneering Joint UNAIDS/WHO 90-90-90 continuum. On a global canvas, exemplified by i.e., the United States, the presence of legislation mandating the divulgence of one’s HIV-positive status to both sexual and drug-sharing partners underscores a resolute commitment to curbing viral dissemination and safeguarding the health of those potentially vulnerable [ 23 ]. This legal framework underscores a shared responsibility to curtail transmission risks. In parallel, Sweden’s embrace of the U = U ( Undetectable = Untransmittable ) mantra marks a progressive stride forward. This stance acknowledges the scientifically established premise that an individual boasting an undetectable viral load due to effective HIV treatment poses no discernible risk of transmitting the virus through sexual contact. Consequently, for those bearing this status, the onus to disclose is mitigated, reflecting a harmonisation of policy with medical wisdom.

In this intricate landscape, the Joint United Nations Programme on HIV and AIDS (UNAIDS) and the World Health Organization’s (WHO) guidelines on “beneficial disclosure” [ 133 ] prominently underscore the ethical mandate for well-informed and mutually agreed-upon choices in the realm of sexual health. Affirming the rights and well-being of HIV-negative partners, these guidelines accentuate the paramountcy of transparency and candid dialogue within intimate relationships. Nevertheless, the article raises a pertinent ethical quandary through an illustrative scenario. It probes whether withholding one’s status—a non-disclosure—could indeed be hailed as a “tremendous victory”, as intermittently articulated in the article, for a potentially affected partner. This underlines the pivotal significance of informed consent and individual agency in the realm of intimate relationships, where every individual deserves the autonomy to shape decisions grounded in accurate information.

Accentuating the weight of open conversations between sexual partners concerning protective measures such as condoms and pre-exposure prophylaxis (PrEP), it is imperative to advocate for sincere discussions that duly honour the autonomy and preferences of all stakeholders. Such a stance acknowledges the synergy between responsible sexual conduct and forthright communication regarding HIV status. Nevertheless, the article undertakes a broader exploration of the repercussions of HIV criminalisation, notably spotlighting Sweden’s context. Such criminalisation potentially dissuades individuals from seeking crucial HIV-related services. The equilibrium between this concern and the imperative to avert transmission constitutes a nuanced challenge, necessitating a meticulous and comprehensive approach bridging legal and public health realms. In the final analysis, the article ardently underscores the need to highlight the significance of voluntary HIV status disclosure, aligning harmoniously with the bedrock principles of ethical decision-making and reverence for individual autonomy. Within the discourse encompassing HIV status revelation, the centrality of the well-being and rights of all stakeholders should be unwavering, ensuring that enlightened choices materialise within an ambiance of unreserved communication and shared understanding.

Beneficial disclosure and partner notification

The guidelines set forth by UNAIDS and WHO [ 133 ] pertaining to beneficial disclosure and ethical partner counselling hold considerable relevance for their application in the context of Sweden’s HIV/AIDS policies. By aligning with these guidelines, Sweden can further enhance its efforts to address the complexities of HIV/AIDS, promote individual autonomy and dignity, and bolster public health outcomes. The principles of voluntary, respectful, and confidential disclosure articulated by UNAIDS and WHO underscore the importance of providing individuals with the agency to decide when and how to disclose their HIV status. This aligns with Sweden’s commitment to individual rights and personal privacy [ 37 ]. Enabling individuals to make informed decisions about sharing their HIV status not only respects their autonomy but also contributes to the creation of a supportive environment that can lead to more open discussions about HIV/AIDS within the community. The emphasis on beneficial outcomes for all parties involved—the individual, their sexual and drug-injecting partners, family, and the broader community—resonates with Sweden’s inclusive approach to healthcare [ 37 ]. By encouraging disclosure that results in better health and informed decision-making for both uninfected and infected individuals, Sweden can foster a culture of responsibility and collaboration.

When considering partner counselling (partner notification), the ethical principles outlined by UNAIDS and WHO [ 133 ] can guide Sweden’s policies in a balanced manner. Prioritising informed consent and confidentiality while recognising the potential consequences of not notifying partners aligns with Sweden’s commitment to ethical healthcare practices [ 37 ]. The emphasis on professional efforts to persuade and support HIV-positive individuals in notifying their partners mirrors Sweden’s emphasis on comprehensive and patient-centred care. In cases where an HIV-positive person refuses to counsel their partners despite thorough efforts to persuade them, Sweden can draw insights from the guidelines’ approach to this complex situation. Ethical weighing of potential harms and informed decision-making can ensure that partner counselling is pursued responsibly. The emphasis on protecting individuals from abuse, discrimination, and stigma resonates with Sweden’s strong stance on human rights and equality [ 37 ]. Adapting the UNAIDS and WHO guidelines [ 133 ] in Sweden would necessitate clear policy frameworks, legal protections, and comprehensive training for healthcare workers and counsellors. By enacting policies that safeguard confidentiality and informed consent, Sweden can establish a supportive environment for ethical partner counselling. Additionally, training initiatives would equip healthcare professionals with the skills and sensitivities required to engage in these delicate discussions effectively.

Overall, embracing the UNAIDS and WHO guidelines on beneficial disclosure and ethical partner counselling can elevate Sweden’s efforts in HIV/AIDS prevention and care. These principles align closely with Sweden’s commitment to human rights, individual autonomy, and public health. By integrating these guidelines into its healthcare system, Sweden can reinforce its position as a leader in progressive and compassionate HIV/AIDS policies.

The emergence and transmission of the HIV viruses can be attributed to various factors, including population movement, urbanisation, changes in sexual relations, new medical procedures, and even war [ 4 ]. This signifies that the AIDS pandemic is not solely of zoonotic origin (SIV; simian immunodeficiency virus) but rather a disaster influenced by complex human factors beyond mere sexual behaviour, such as political decisions and anti-science sentiments. As such, it remains significant to highlight the importance of considering various factors when discussing public health challenges. Despite Sweden not experiencing a severe epidemic and being the first country to achieve the 90-90-90 continuum of care targets, HIV and AIDS have still resulted in significant stigma. This stigma has been perpetuated by publicised incidents, strong opinions, and policies that criminalise gay men living with HIV, ultimately viewing them as a risk rather than recognising them as victims.

The impact of punitive and criminalising legislation and attitudes has proven to be counterproductive in preventing the spread of HIV. Instead, such legislation fosters stigma and fear, hindering preventive efforts, early detection, and treatment. Fortunately, there have been positive developments in recent years. Medical advancements have contributed to a shift in attitudes, exemplified by the Swedish Parliament’s decision in 2019 to investigate a potential abolishment of the obligation to disclose one’s HIV status [ 134 , 135 ]. In response, the Swedish government tasked the Public Health Agency of Sweden with looking into updating the Swedish National HIV/AIDS Strategy (with certain respect to mandatory partner notification), with results expected by April 2023 [ 136 ]. This move represents an important milestone, as it not only improves the quality of life for gay men living with HIV but also eliminates the risk of being viewed as criminals solely based on their HIV status.

In addition to legislative changes, it is crucial to implement anti-stigma interventions that aim to enhance the well-being of gay men living with HIV and further improve HIV prevention in Sweden. By challenging societal prejudices and fostering understanding, these interventions can contribute to a more supportive and inclusive environment. Ultimately, the abolition of the obligation to disclose HIV status stands as a significant victory for all individuals affected by HIV, eliminating the stigma and empowering those living with the virus to lead fulfilling lives without fear of criminalisation. After all, there is limited evidence to support the effectiveness of criminalisation and penal laws in reducing HIV incidence. On the contrary, such laws may undermine the prevention efforts outlined not only in Sweden’s National HIV/AIDS Strategy but also in national strategies worldwide.

Acknowledgments

The author would like to thank Dr Francine Jellesma—as without her editorial support, encouragement, and collegiality, this article would not have seen the light of day.

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Essay About HIV/AIDS

Introduction.

Human Immunodeficiency Virus, abbreviated as HIV, attacks the body’s immune system, and if left untreated, it can cause AIDS (Acquired Immune Deficiency Syndrome). HIV is a retroviral disease transmitted through unprotected sexual activity, from mother to child, blood transfusion, contact with infected body fluids, or hypodermic needles (Melhuish & Lewthwaite, 2018). The disease originated from a zoonotic animal, a chimpanzee in Central Africa. The virus version in chimpanzees, Simian Immunodeficiency Virus, is thought to have been passed to humans during their hunting activities way back in 1800. The disease has further been spread across Africa over the decades and eventually into other parts of the world. Its existence in the United States occurred between the mid to late 1970s.

Disease Manifestation

HIV weakens the immune system through infection and destruction of the CD4+ T cells, leading to immunodeficiency at the later stages of the disease. The virus adheres to the CD4+ protein on its surface and other cells to gain entry into the body  ( Melhuish & Lewthwaite, 2018 ).  Other coreceptors such as CCR5 and CXCR4 are essential in enabling the virus to gain complete access and cause infection to the body cells. HIV infection undergoes three stages: acute illness, chronic infection, and acquired immunodeficiency syndrome (AIDS) (Velloza et al., 2020). The first stage usually develops between 2 to 4 weeks after initial exposure. The stage often goes unrecognized because of the occasionally mild and nonspecific symptoms. Some of the clinical manifestations observed in the first stage include typical rushes distributed on the face and trunk, although they may also appear in the palms and soles. Oral and genital mucocutaneous ulceration is also another clinical manifestation that can be experienced during the first stage. In this stage, gastrointestinal manifestation, facial nerve palsy, acute encephalopathy, and many other clinical symptoms may participate.

In the second stage of infection, the virus continues to multiply but at low levels. Infected individuals who are in this stage may not have any alarming symptoms. The stage can last for up to 10 to 15 years, although it may move so fast in some individuals c. AIDs infection occurs in the third stage. The infection may be manifested by symptoms such as rapid loss of weight, recurring fever, extreme tiredness, prolonged swelling of the lymph glands in the groin, armpits, or neck, sores in the mouth, diarrhea that lasts for more than a week, or memory loss and other neurologic disorder (Nasuuna et al., 2018). When infected individuals are not treated, they may develop severe diseases such as serious bacterial infections, cryptococcal meningitis, tuberculosis, and cancers like Kaposi’s sarcoma and lymphomas.

Diagnosis and Treatment

HIV diagnosis can be made by a rapid diagnostic test that provides results on the same day. Individuals may also test themselves using an HIV self-test kit, although a confirmatory test has to be done later on by a qualified health professional (Mayo Clinic, 2020). The diagnostic test works by detecting antibodies produced by a person as part of their immune response to fight the virus. When the results turn out positive, immediate treatment should be done to manage the virus (Mayo Clinic, 2020). A combination of three or more antiretroviral drugs (ARVs) or antiretroviral therapy (ART) may suppress the symptoms and viral replication within an individual hence allowing recovery of the immune system and regain the ability to protect the body from opportunistic infections.

The public health measures of HIV prevention can be divided into three categories; primary, secondary, and tertiary prevention. Primary prevention measures protect an individual from acquiring HIV infection. It involves strategies such as abstaining from sex, not sharing needles and sharp objects and using condoms when engaging in sexual activities. Prevention medicines such as PrEP (pre-exposure prophylaxis) and PEP (post-exposure prophylaxis) may also be used to protect yourself from the infection (Mayo Clinic, 2020). Secondary HIV prevention involves measures that should be directed to infected individuals to prevent transmission to negative people (Mayo Clinic, 2020). Strategies used in secondary prevention entails giving health education to those who are infected, supporting ART adherence efforts, providing ongoing risk assessment regarding substance use and sexual behavior, encouraging infected individuals to disclose their HIV status to their sexual and drug use partners, prescribing condoms for positive individuals and providing counseling to them (Mayo Clinic, 2020). Tertiary prevention measures ensure the improved treatment to reduce the impact of HIV/AIDS disease and promote recovery. A tertiary prevention strategy aims at reducing complications that may be caused by HIV infection.

Surveillance measures

Local surveillance of HIV may be carried out using various reporting tools to fill HIV infection cases and later submitted to the local health departments for further analysis. The Centre for Disease Control and Prevention (CDC) plays a big role in collecting, analyzing, and disseminating data for national surveillance on HIV/AIDS. The CDC’s National surveillance system monitors HIV trends in the U.S (CDC, 2020). Moreover, the World Health organization can conduct international surveillance of HIV/AIDS, which surveys on HIV sentinel, STDs, and behavior.

Prevalence and Incidence

According to WHO (2020), the global prevalence of HIV is estimated to be over 37.7 million people, including 1.7 million children. The percentage prevalence in adults is 0.7%. Additionally, the incidence of HIV infection was 1.5 million (WHO, 2020). Most people living with HIV live in low and middle-income countries, with East and Southern Africa being the most affected region globally. In 2020, there were 670,000 new cases which amounted to 20.6 million infected individuals in East and Southern Africa.

Interesting facts

According to the WHO, some of the current interesting facts about HIV/AIDS is that it has claimed over 36.3 million people since its emergence; hence, it is still a major public health concern (WHO, 2021). Additionally, over 37.7 million were HIV positive in 2020, whereby 25.4 million were in the WHO African region. WHO also reports that over 680 thousand individuals succumbed to HIV-related infections, and over 1.5 million people acquired HIV/AIDS.

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Nasuuna, E., Kigozi, J., Babirye, L., Muganzi, A., Sewankambo, N. K., & Nakanjako, D. (2018). Low HIV viral suppression rates following the intensive adherence counseling (IAC) program for children and adolescents with viral failure in public health facilities in Uganda.  BMC Public Health ,  18 (1), 1-9.

Velloza, J., Kemp, C. G., Aunon, F. M., Ramaiya, M. K., Creegan, E., & Simoni, J. M. (2020). Alcohol use and antiretroviral therapy non-adherence among adults living with HIV/AIDS in Sub-Saharan Africa: a systematic review and meta-analysis.  AIDS and Behavior ,  24 (6), 1727-1742.

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“The Story of My Life”: AIDS and ‘Autobiographical Occasions’

• Published: 30 October 2007
• Volume 31 , pages 37–56, ( 2008 )

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• Jonathan M. Ellen 2  

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Talk and ‘telling’ have assumed prominent roles in preventing HIV and promoting life with the disease at the start of the twenty-first century. Our concern in this paper is to show how social structures and circumstances shape the narrative productions of HIV positive patients whose lives are institutionally managed. We consider what ‘telling’ means when young women with few economic resources are encouraged or mandated to talk about themselves by case managers, researchers, therapists, welfare workers, and clinic staff. We organize our analysis around three such ‘autobiographical occasions’: disclosures to intimate partners prompted by agents of the state; employment opportunities in which women are hired to tell others about living with HIV as peer educators or outreach health workers; and research interviews. We argue that storylines about living with HIV have been laid down by powerful social actors whose illness experiences do not reflect those of many poor patients. These formulations constitute an ‘archive’ which organizes institutional practices and discourses. These matter not only because they provide patients with a language through which to render their actions meaningful, but because they shape the everyday experience of HIV outside the clinic, the welfare office, and the therapy session.

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The research protocol was reviewed and approved by the Institutional Review Board (IRB) at each of the clinic sites (the University of Miami, Montifiore Medical Center, Cook County Hospital, and Tulane Medical Center) as well as by the IRB at the Johns Hopkins School of Medicine.

Most states, approximately 27, have HIV-specific laws that make it a crime to have sex without disclosing one’s HIV status to one’s partner (see The Body, an on-line source for HIV/AIDS information at: http://www.thebody.com ). However these laws differ, sometimes markedly, in terms of what is required in order to prosecute. Even in states without HIV-specific laws, some criminal laws can be applied to cases in which sexual behavior poses some risk of HIV transmission (Lazzarini et al. 2005 ).

An exception is Crimp ( 2003 ), although this account is again based on the experience of a gay man.

Atkinson, P. (1997). Narrative turn or blind alley? Qualitative Health Research , 7 , 325–344.

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Acknowledgements

This research was supported by the National Institutes of Drug Abuse (NIDA) through grant number R01 DA14706, and by the Adolescent Trials Network (ATN). We would like to thank the following people for facilitating our interviews with the young women at the clinic sites: Elizabeth Enriquez-Bruce, Melinda Marquez, Donna Maturo, Melissa Moo-Young, Trina Jeanjacques, and Hannah Wilson-Major. The paper was improved by very generous and very helpful critiques from the editor and from four anonymous reviewers, as well as from Larry Brown, Veena Das, Joshua Garoon, Aaron Goodfellow, Siba Grovogui, Heather Huszti, Todd Meyers, Lindsey Reynolds, and Emma Tsui. Finally, we are deeply indebted to ‘Crystal,’ to ‘Howie,’ and to all of the young women who participated in this study for everything they have taught us.

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Leonard, L., Ellen, J.M. “The Story of My Life”: AIDS and ‘Autobiographical Occasions’. Qual Sociol 31 , 37–56 (2008). https://doi.org/10.1007/s11133-007-9086-5

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• Correspondence to:
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Narrative accounts of illness often focus on the sociological construction of illness and neglect the body. This paper explores themes of seeing and being seen in the narrative of an HIV positive man to show the importance of uncovering the psychological and corporeal experience of HIV. Such accounts complement and enhance conventional medical accounts of illness. Poignantly, it is a story of how he understands others as reading his body and writing on it. Further, his story is not one that is in circulation. Accounts of positive heterosexual males are few. This paper seeks to add at least one account to the public record so that others may have narrative resources to draw upon. Narrative analysis provides new perspectives on the lived experience of HIV, which are crucial to appreciate how it might be possible to live a positive life.

• GUM, genitorurinary medicine
• HIV, human immunodeficiency virus
• IVDU, intravenous drug user
• STI, sexually transmitted infection

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↵ i I would like to thank Andrew Edgar for discussions, which prompted new ways of thinking about this data.

↵ ii For a provirus to produce new viruses, RNA copies must be made that can be read by the host cell’s protein making machinery. These copies are called messenger RNA (mRNA), and production of mRNA is called transcription, a process that involves the host cell’s own enzymes. Viral genes in concert with the cellular machinery control this process: the tat gene—for example, encodes a protein that accelerates transcription. Genomic RNA is also transcribed for later incorporation in the budding virion. 14

↵ iii Pauses are marked by (.) and line numbers of the original transcript are given: l indicates a single line, ll indicates more than one line.

↵ iv CD4 count is a measure of immune system strength as it measures the level of T helper cells in the blood. A CD4 count of zero essentially means that the immune system is not functioning at all.

↵ v “Dirty” is also exactly the term John uses when talking about homosexuals; “they’re [homosexuals] dirty buggers” (l 167), “you don’t want those dirty buggers near us” (l 171).

↵ vi Though the Positive Speakers’ initiative, active in many parts of the world, attempts to recuperate this.

Source of Support: The Language and Global Communication research programme of the Centre for Language and Communication Research has been funded for a five year period by the Leverhulme Trust.

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Social and cultural aspects of HIV and AIDS in West Africa: a narrative review of qualitative research

Affiliation.

• 1 Department of Anthropology, University of Copenhagen, Denmark. [email protected]
• PMID: 23237041
• DOI: 10.1080/17290376.2012.683580

With the increasing focus on the role of social aspects of the HIV epidemic in sub-Saharan Africa, the need for an overview of existing research dealing with such issues has become more urgent. The objective of this article is to provide a thematic overview of existing qualitative research on HIV and AIDS in the West African region and to analyze the main research findings in order to identify possible gaps and recommend new research themes to inform future research-based interventions. The analysis is based on a total of 58 articles published from 2001 to 2009 in English or French identified through a literature search in seven scientific, bibliographical databases. Searches included terms related to qualitative studies combined with various terms related to HIV/AIDS. The results of this narrative review show that there was a geographical concentration on Nigeria, Ghana, Burkina Faso and Côte d'Ivoire and a strong urban bias, with most studies taking place in the capital cities of these countries. The majority of the studies focused on women or women and men; only four articles dealt exclusively with men, of which only two were on men who have sex with men. The main study groups were people living with HIV, young people or female sex workers. Sexual risk-taking and stigmatization were the themes that were most prominently explored in the articles we reviewed. We conclude that research needs to be strengthened in relation to the analysis of experiences with antiretroviral therapy and the non-optimal access to treatment in West Africa. Also, more research is needed on men and their exposure to HIV/AIDS, as well as on the role of concurrent partnership in the spread of HIV.

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Living with HIV and Getting Vaccinated: A Narrative Review

Andrea de vito.

1 Unit of Infectious Diseases, Department of Medicine, Surgery, and Pharmacy, University of Sassari, 07100 Sassari, Italy; [email protected] (A.C.); ti.ssinu@onadroig (G.M.)

Agnese Colpani

Mattia trunfio.

2 Unit of Infectious Diseases, Department of Medical Sciences, University of Turin, 10149 Torino, Italy

Nicola Leoni

Stefano ruiu, sergio babudieri, andrea calcagno, giordano madeddu, associated data.

Not applicable.

After 40 years of its appearance, human immunodeficiency virus (HIV) infection remains a leading public health challenge worldwide. Since the introduction of antiretroviral treatment (ART), HIV infection has become a chronic condition, and people living with HIV could have life expectancies close to those of the general population. People with HIV often have an increased risk of infection or experience more severe morbidity following exposure to vaccine-preventable diseases. Nowadays, several vaccines are available against bacteria and viruses. However, national and international vaccination guidelines for people with HIV are heterogeneous, and not every vaccine is included. For these reasons, we aimed to perform a narrative review about the vaccinations available for adults living with HIV, reporting the most updated studies performed for each vaccine among this population. We performed a comprehensive literature search through electronic databases (Pubmed—MEDLINE and Embase) and search engines (Google Scholar). We included English peer-reviewed publications (articles and reviews) on HIV and vaccination. Despite widespread use and guideline recommendations, few vaccine trials have been conducted in people with HIV. In addition, not all vaccines are recommended for people with HIV, especially for those with low CD4 cells count. Clinicians should carefully collect the history of vaccinations and patients’ acceptance and preferences and regularly check the presence of antibodies for vaccine-preventable pathogens.

1. Introduction

After 40 years of its appearance, human immunodeficiency virus (HIV) infection remains a leading public health challenge worldwide. Since the introduction of antiretroviral treatment (ART), HIV infection has become a chronic condition, and people living with HIV (PWH) could have life expectancies close to those of the general population [ 1 , 2 ]. This implies that PWH are becoming older, with an increase in the comorbidity burden that HIV specialists have to manage [ 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 ]. However, despite ART, many people do not have a complete CD4 recovery [ 13 , 14 , 15 , 16 ], and PWH with low CD4 cell count have an estimated life expectancy of 30 years lower than the general population [ 1 ].

People with HIV often have an increased risk of infection or experience more severe morbidity following exposure to vaccine-preventable diseases. Therefore, it is fundamental to prevent non-communicable and infective diseases [ 17 , 18 ]. Nowadays, several vaccines are available against bacteria and viruses. Different vaccinal technologies have been developed over the years (e.g., live-attenuated, whole inactivate vaccine, virus-like particles, polysaccharide, mRNA), with varying routes of administration (e.g., oral, subcutaneous, nasal) [ 19 , 20 ]. However, not all vaccines could be administered in PWH, particularly in those people with a low CD4 cells count. For example, the use of a trivalent live-attenuated vaccine against measles, mumps, and rubella is contraindicated in PWH with a CD4 cell count <200 cell/mm 3 for the high risk of developing the disease [ 21 , 22 , 23 ]. Therefore, it is clear that focusing on the vaccination of PWH is mandatory, balancing the pros and cons of each available vaccine.

National and international vaccination guidelines in PWH are heterogeneous, and not every vaccine is included [ 22 , 23 , 24 , 25 , 26 , 27 ] (Tables 1, 2, 5–7 and 9). For these reasons, we aimed to perform a narrative review about the vaccinations available for adults living with HIV, reporting the most updated studies performed for each vaccine among this population.

2. Vaccines

2.1. hepatitis a virus.

Hepatitis A is an acute infectious disease transmitted through contaminated food or water by fecal–oral route. Hepatitis A virus (HAV) has an icosahedral structure, and human beings are the only reservoir in its biological cycle. Therefore, it is a cosmopolitan infection. However, its circulation is influenced by hygiene and socioeconomic condition; thus, it is an endemic disease in developing countries commonly acquired during childhood. In non-endemic countries such as Europe, HAV infection is acquired in adulthood. Risk factors include travel to an endemic country, intravenous drug use, or homelessness and being men who have sex with men (MSM) [ 28 ].

No specific disease manifestations in immunocompromised hosts or PWH have been described. However, Lin et al. showed that people with HIV are more infectious and for a more extended period than people without HIV [ 29 ]. Therefore, the normalization of transaminase levels may also be prolonged in these patients [ 30 ]. However, some cases of fibrosing cholestatic hepatitis in PWH with severe immunodeficiency have been described, with severe jaundice, coagulation deficit, and encephalopathy with rapid evolution until death [ 31 ].

Specific treatment for HAV is not available. Hospitalization is mandatory only in fulminant hepatic failure, requiring a liver transplant. Predictors of disease evolution are age (<10 or >40 years old), creatinine ≥2–3 mg/dl, and prothrombin time ≥50 s. Otherwise, supportive care and symptomatic treatment are sufficient [ 32 ].

Prevention measures for HAV infection include vaccination, immunoglobulin administration, and careful personal hygiene. Vaccination of high-risk adults such as travellers in super-endemic countries, MSM, patients with chronic liver disease, and individuals with one year or more of HIV infection is recommended. The HAV vaccine contains purified and inactivated viruses boosted by an aluminium salt as an adjuvant. Two doses are required in a range of six to eight months [ 33 ]. The vaccine is safe and immunogenic in 97–99% of the cases two weeks after the second dose. However, the efficacy is inferior in HIV co-infected patients, and the seroconversion rates range from 52% to 94% [ 34 ]. Recommendations of the different guidelines are summarized in Table 1 .

Comparison of five HIV guideline recommendations for the HAV vaccine administration.

NP: not present.

Patients with CD4 cells count <200 cells/mm 3 and those with detectable HIV-RNA have a higher risk of poor response to the vaccine. For these reasons, some authors suggest an additional dose of the HAV vaccine to improve the durability of seroprotection in PWH with low CD4 cells count [ 29 ]. Chen et al. found that PWH who have lost their anti-HAV antibodies after primary vaccination had a faster and better serological response to a single dose of HAV revaccination than PWH who received the first dose [ 35 ]. Regarding the durability of HAV response, Jablonowska and Kuydowicz evaluated 234 PWH, of which about 30% had anti-HAV antibodies [ 36 ]. Of the 83 PWH who received a complete vaccination, 79.5 had a good response (anti-HAV-T >20 IU/L after one month since the booster dose). In addition, they confirmed that having less than 200 CD4/mm 3 and HIV/HCV coinfection were associated with a worse response [ 36 ].

The most common adverse events are fever, injection site reaction, rash, and headache [ 37 ]. In addition, severe events, such as Guillain-Barrè syndrome, have been reported, although their relationship with vaccination is uncertain. No difference regarding safety has been seen in PWH [ 34 ]. Finally, Crisinel et al. reported a 100% seroconversion rate after two doses of HAV vaccination in children living with HIV without severe symptoms or immunosuppression. Despite a high seroconversion rate, children with CD4 counts of <750/mm 3 have lower anti-HAV antibodies, which could reflect less lasting protection. For this reason, serological monitoring and additional boosting doses should be considered for these children [ 38 ].

Although vaccination against HAV is essential for HIV-infected patients, the uptake of HAV vaccine is reported to be very low [ 39 ]. For this reason, further efforts are needed to improve HAV vaccine offer and acceptance.

2.2. Hepatitis B Virus

Hepatitis B virus (HBV) is one of the principal causes of chronic viral liver disease worldwide. As for HIV, no definitive cure is currently known.

Hepatitis B virus could be transmitted by blood, semen and other bodily fluids, or through vertical transmission [ 40 , 41 , 42 , 43 ]. People with HIV are less likely to develop a clinical recovery after acute infection, given the lower HBV surface antibody (HBsAb) production rates. For this reason, these patients are more likely to develop a chronic infection, with liver cirrhosis, end-stage liver disease, and hepatocellular carcinoma (HCC) than the general population [ 44 , 45 , 46 , 47 , 48 , 49 ].

HBV surface antibody production is less commonly observed with low CD4+ cell counts, high HIV viral loads, HCV co-infection, and other comorbidities [ 50 ].

Even in the ART era, there is evidence of higher mortality among PWH with HBV infection [ 51 ]. For this reason, achieving long-term immunity protection is still challenging, and vaccination remains one of the most important weapons for HBV prevention [ 52 ]. Consequently, targeted interventions for assessing immunity and primary prevention with vaccines should be prioritized, especially for those people who need to switch to a dual-regimen treatment without an active drug against HBV.

Regarding vaccination, there available different effective formulations. They consist of recombinant, combined, or mammalian cell-derived vaccines.

• (i)   Recombinant HBV vaccines include Recombivax HB ® [containing 10 mcg HBV surface antigen (HBsAg)/mL], Engerix-B ® (containing 20 mcg HBsAg/mL), and Heplisav-B ® (HepB-CpG; containing 20 mcg HBsAg/0.5 mL). Recombivax HB ® has been available since 1983 and is widely available [ 53 ]. It typically requires three doses. Engerix-B ® has been available since 1989 and usually requires three doses. Finally, HepB-CpG (an adjuvanted vaccine) was approved in 2017, only in adults. It is administrated in two separate doses at one month of distance [ 54 , 55 , 56 ].
• (ii)   Combined vaccines: The combined vaccine (Twinrix ® ) contains 720 enzyme-linked immunosorbent assay units of inactivated hepatitis A virus and 20 mcg of recombinant HBsAg [ 57 ].

The different recommendations are summarized in Table 2 .

Comparison of five HIV guideline recommendations for the HBV vaccine administration.

* HBsAg negative, HBcAb positive, and HBsAb negative. NP: not present.

According to all national and international guidelines, PWH should be assessed for HBV infection before choosing vaccination. In particular, every patient should be screened for HBsAg, HBsAb, and HBV core antigen–antibody (HBcAb) [ 23 , 24 , 25 , 26 , 58 ]. Depending on the results of this test, we could face different situations:

People with HIV who never received HBV vaccine and who have never encountered the virus (anti-HBs, HBsAg, anti-HBc negative)

In this case, HBV vaccination is recommended for all PWH regardless of HIV viral load (VL) and CD4+ cells count, given their HBV susceptibility.

Four randomized controlled trials (RCTs) on PWH were conducted from 2005 to 2013, analyzing various schedules [ 59 , 60 , 61 , 62 ]. In almost all cases, there was an advantage to a higher dose of vaccine in this population. Interestingly, Cornejo-Juárez et al. showed no relevant differences when comparing a 10 µg to a 40 µg schedule [ 60 ]. Furthermore, an RCT conducted by Chaiklang et al. in 2013 highlighted no statistical differences between the study groups; they also observed a higher response rate in classic schedules than in every previous study [ 63 ]. However, results showed a response ranging from 16% to 18.2% lower at 12 months in the group receiving the standard dose ( Table 3 ). Even if not statistically significant, this result could be considered clinically relevant when coming to practice. Finally, in 2013, a meta-analysis carried out by Ni et al. confirmed the advantage of higher doses to increase response rates (pooled OR for increased dose = 1.96 (95% CI 1.47–2.61)) [ 64 ].

Randomized controlled trials on HBV vaccination among PWH who never received vaccine.

People with HIV who did not respond to a vaccine cycle (anti-HBs, HBsAg, anti-HBc negative with a known history of vaccination)

People with HIV who did not respond to a vaccine cycle are considered susceptible to HBV. For this reason, a new vaccine cycle should be considered for this population to obtain an acceptable serological response. However, there are no univocal indications regarding revaccination or the schedule to use. For example, in the United States and in France, a second series is recommended [ 23 , 65 ]. Instead, British recommendations consider three vaccines with high doses [ 25 ].

Over the years, several non-randomized studies have been conducted, but only a few RCTs.

In 2010, Psevdos et al. analyzed the response differences between supplementary double or standard doses among 101 PWH non-responders to the first HBV vaccine schedule [ 66 ]. They found a difference of ~30% in response rates in favor of double dose ( p = 0.006).

In 2015, Rey et al. conducted a study on 178 PWH assessing the efficacy of a double vs. standard dose vaccine among non-responders to a 20 µg booster after the first vaccine cycle [ 67 ]. As a result, they found a significant difference at week 72 of follow-up (54% vs. 31%, respectively; p = 0.01).

Recently, Vargas et al. compared the efficacy of a high-dose vs. standard-dose HBV revaccination schedule in an RCT including 107 PWH. From December 2013 to March 2018, they enrolled patients with HBs-Ab titers <10 IU/L after the first HBV vaccination regimen [ 68 ]. The high-dose group received three doses of 40μg recombinant HBV vaccine; the other one received 20 μg at 0, 1, and 2 months. At one year of follow-up, they demonstrated 40% higher response rates among people receiving a 40 μg dose (80% vs. 39.1%; p = 0.01) ( Table 4 ).

Randomized controlled trials on HBV vaccination among PWH who did not respond to vaccine.

All this considered, a double-dose revaccination seems to be the best practice among PWH who did not respond to the first vaccine cycle.

People with HIV with positive HBcAb

Literature data showed how up to 20% of PWH tested positive for HBcAb [ 69 , 70 , 71 , 72 , 73 ] However, there is no international consensus about vaccination in this case. For example, the European AIDS Clinical Society (EACS) guidelines report that “vaccination is not recommended in this population” [ 21 ], while the National Institute of Health (NIH) suggest performing one standard dose of HepB ( Table 2 ).

Unfortunately, few studies about this population are present. In 2003, Gahndi et al. found that among 42 PWH positive only for HBcAb, one had a positive HBV-DNA, supporting the idea that occult hepatitis B viremia may occur even after apparent clearance of infection [ 74 ]. In 2016, Piroth et al. conducted a clinical trial in this population, enrolling 54 PWH with isolated HBcAg positivity. All people received one dose (20 µg) of the recombinant HBV vaccine. At 4 weeks, only 25 (46%) patients were responders, and only 14/24 (58%) maintained an anti-Hbs level >10 mIU/mL at 28 weeks (one LTFU). Those who at 4 weeks were non-responders (anti-HBs level of <10 mIU/mL) received three additional double doses. Among them, 24/27 (89%) and 81% (21 of 26) had an anti-HBs level of ≥10 mIU/mL at week 28 and month 18, respectively. The authors concluded, “All of the patients with an isolated anti-HBc profile who did not have an anti-HBs titer of >100 mIU/mL 4 weeks after a single recall dose of HBV vaccine should be further vaccinated with a reinforced triple double-dose scheme” [ 75 ]. Finally, from 2005 to 2016, some prospective studies aimed to evaluate response rates with different schedules, and vaccine success was reported in up to 89%. For this reason, we agree with NIH guidelines since the HBV vaccine represents an added value among these patients, reducing the risk of new infections [ 74 , 75 , 76 , 77 ].

HBV surface antigen positive

In this case, vaccination is not recommended, and patients should be treated with a triple-drug regimen containing two Nucleoside Reverse Transcriptase Inhibitors (NRTI), as suggested by guidelines [ 23 , 24 , 25 ].

In conclusion, the management of HBV vaccination is still debated in the literature, and further studies with longer follow-ups are needed. In the meantime, the suggestion is to monitor the HBsAg title yearly and use a tiple-drug treatment containing tenofovir in the non-responder subjects.

2.3. Human Papillomavirus

Human papillomavirus (HPV) is the most common sexually transmitted disease worldwide. Among the >200 identified genotypes so far, most can cause anogenital warts and respiratory papillomatosis, whereas about 40 genotypes have been associated with premalignant and malignant lesions of the cervix, anus, vulva, vagina, penis, and oropharynx [ 78 ]. Worldwide, genotypes 16 and 18 cause about 70% of cervical cancers (the fourth most common cancer in women), while HPV-6 and 11 are the most frequent causes of benign lesions [ 78 , 79 ].

People with HIV, even on effective ART, have increased risk and rate of HPV acquisition, persistence, and re-infection after clearance, higher carriage of multiple HPV genotypes, and a more rapid progression to HPV-associated malignancies [ 80 , 81 , 82 ]. Furthermore, HIV-positive MSM have the highest HPV-related anal warts and cancer risk. At the same time, women with HIV show a six-fold greater incidence of cervical cancer than HIV-negative women [ 83 ]. The worse epidemiology of HPV infection in PWH is due to behavioral habits and immunological reasons related to HIV-induced NK, B, and T-cell dysfunction, chronic inflammation, and persistent mucosal/epithelial alterations [ 84 ]. Furthermore, HPV infection can increase by two-fold the likelihood of HIV acquisition [ 85 ]. HPV vaccination may have a relevant impact in settings featured by low HIV prevention coverage, where mathematical models showed that the cumulative number of HIV infections that could be averted by HPV vaccination over 50 years could reach up to 27,812 cases in women and 14,693 cases in men [ 86 ].

Four types of prophylactic recombinant vaccines based on virus-like particles are currently available: two bivalent (Cervarix ® , Glaxosmith-Kline, UK, and Cecolin ® , Xiamen Innovax Biotech, China), the quadrivalent, and the nonavalent (Gardasil ® and Gardasil-9 ® , Merck, Rahway, NJ, USA). The two bivalent vaccines protect against HPV-16 and 18, while Gardasil ® and Gardasil-9 ® protect against HPV-6, 11, 16, and 18, and against HPV-6, 11, 16, 18, 31, 33, 45, 52, and 58, respectively.

In the general population, HPV vaccines showed outstanding safety and effectiveness against vaccine-included genotypes, anogenital warts, and high-grade intraepithelial neoplasia up to 14 years after vaccination [ 87 ]. As a result, vaccination regimes for young girls and boys (9–14 years) have moved from the original licensed 3 doses to 2 doses. In addition, there is growing interest in evaluating whether one shot is insufficient for long-lasting protection [ 88 ].

Despite HPV vaccination being also recommended for immunocompromised subjects, including PWH, robust consolidated evidence on its efficacy and safety is missing in PWH. Several studies suggest these vaccines are safe and immunogenic. Still, there has been no formal assessment of the influence of vaccine type, number of doses, baseline HPV serostatus, nor of the age and timing of vaccination along the course of HIV infection stages. Guideline recommendations are summarized in Table 5 .

Comparison of five HIV guideline recommendations for HPV vaccine administration.

A 2022 meta-analysis of 18 longitudinal studies, including about 3900 participants, evaluated HPV vaccines immunogenicity, safety, and efficacy in PWH according to baseline HPV status [ 89 ]. Overall, their findings support that PWH develop a valid immune response following HPV vaccination and that all the vaccines are as well tolerated and safe as for HIV-negative populations. Nevertheless, the pooled follow-up was 1–2 years, no study assessed the effects of one or two doses only, and only one reported on Gardasil-9 ® and none on Cecolin ® , recently licensed [ 89 ]. Furthermore, most of the participants included in the meta-analysis were relatively healthy but also more representative of old HIV-positive cohorts compared to PWH attending clinics nowadays: they presented an average long duration of infection off ART and old ART regimens.

As for immunogenicity, among PWH who were seronegative for HPV-16 and -18 prior to vaccination, seroconversion rates were high (>94%) at 7 months from the first dose across all vaccines [ 89 ]. Seropositivity after the third dose remained high despite some decline over time, which was more pronounced in PWH as compared to HIV-negative participants and greater for HPV-18 and with the quadrivalent vaccine; consequently, increases in seropositivity after a fourth dose was more pronounced for this genotype and with Gardasil ® [ 89 ]. Due to heterogeneity and limited statistical power, there was only modest evidence suggesting that antibody titers and seroconversion rates were lower in PWH with lower CD4+ counts or detectable plasma viremia. Therefore, no conclusion was drawn for the potential contributions of ART [ 89 ]. Previously, lower antibody titers and seroconversion rates after HPV vaccination in PWH with CD4+ count ≤200 cells/mm 3 , positive correlations between CD4+ count and antibody titers, no difference in antibody titers by CD4 nadir, and higher antibody titers in PWH on ART (vs. off ART) and in those virally suppressed (vs. non-suppressed) were reported [ 90 , 91 , 92 , 93 , 94 ]. Interestingly, genotype- and timing-specific differences in seropositivity between HIV-negative and PWH after three doses could also occur [ 89 ].

To date, no reliable estimate of any biological effect of HPV vaccination in PWH has been carried out; thereby, most evidence relies on immunological responses with no robust and unbiased data about the clinical counterpart of such responses, such as post-vaccination cytology results or rates of HPV infection and anogenital warts and cancers [ 89 ]. For instance, and partially differing from the results in adult PWH, among perinatally infected youths receiving Gardasil ® , viro-immunological parameters were marginally associated with abnormal cytology but not with antibody titers or vaccine doses [ 95 ]. Eventually, the 2022 meta-analysis concluded that PWH who have not been vaccinated prior to acquiring HIV can still benefit from receiving the vaccine. However, the higher likelihood of HPV-positivity in PWH may hinder the net benefit of vaccination independently from other determinants, such as immune competence [ 89 ].

More data are also required to confirm the alleged superior immunogenicity of Cervarix ® compared to the other HPV vaccines in PWH [ 81 , 88 , 96 ]; this observation could be potentially explained by the fact that among the licensed vaccines, only Cervarix ® contains AS04. This peculiar adjuvant is a detoxified form of lipopolysaccharide that acts as a Toll-like receptor 4 (TLR) agonist. Previous evidence about anti-HBV vaccination suggested that TLR agonist adjuvant-based vaccines can improve PWH immunogenicity by overcoming T follicular helper dysfunctions [ 81 , 97 ]. However, considering the greater prevalence of infections by concurrent multiple HPV genotypes in PWH, the cross-protection towards a wider spectrum of genotypes induced by Cervarix ® may be lower compared to quadri- and nonavalent vaccines. Therefore, mixed vaccination regimens may be regarded with interest in PWH. However, the general population still has limited data supporting this approach [ 98 ].

In conclusion, further research is warranted to detail the influence of prior HPV exposure, the role of immune suppression, HIV infection stages, the timing of ART initiation and its duration, and the age of vaccination, as all could potentially affect the efficacy and duration of protection in PWH.

2.4. Influenza Virus

Human Influenza A and B viruses cause annual outbreaks of Influenza in temperate climates during winter. Influenza C virus is less common and causes milder diseases, while Influenza D virus does not affect humans. Seasonal Influenza symptoms include dry cough, fever, myalgia, arthralgia, headache, and malaise [ 99 ]. Most people recover without medical attention; however, high-risk individuals can develop severe illnesses and death. Mortality is estimated to be between 290,000 and 560,000 deaths per year. People at greater risk of disease progression are pregnant women, children under 59 months of age, people with chronic morbidities, elderly people, and people affected by immunosuppressive conditions, including PWH. Transmission easily occurs through droplets and can be prevented with face masks and frequent hand hygiene [ 100 ].

A safe and constantly updated inactivated vaccine is available, and its administration is recommended to all people aged >6 years, with high priority among at-risk individuals. A trivalent vaccine containing two strains of virus A and one of virus B was first introduced; in 2013–2014, a fourth component targeting B strain was added. The vaccine is not always consistent with the circulating virus due to the high variability of Influenza virus. However, it is updated twice yearly. Even if not perfectly matching, it can still confer protection against severe illness and hospitalization [ 101 ].

People with HIV have always been at higher risk of disease progression, even if hospitalization due to Influenza has decreased since the introduction of ART. Still, PWH are considered at higher risk of disease complications and severe illness; thus, annual vaccination with a tetravalent vaccine is recommended [ 102 , 103 , 104 ].

A systematic review by Remschmidt et al. conducted in 2014 aimed to assess Influenza vaccine safety and efficacy among PWH. Overall, they collected two randomized clinical trials, three cohort studies including adults with HIV, and one trial including children. All data collected refer to the trivalent vaccine, the only one available at the research time. Authors highlighted that the vaccine prevents Influenza in adults, but no evidence regarding pneumonia, hospitalization, and mortality was reported. No difference according to CD4+ cells count and HIV viral load was encountered.

On the contrary, effectiveness among children under six years old was not demonstrated. This group reported an inferior antibody response compared to its healthy counterparts. However, few data are available among children with and without HIV [ 105 ].

A cohort study conducted during seasonal Influenza 2013–2014, 2014–2015, and 2015–2016 involving PWH and HIV-negative subjects grouped by age showed a lower prevalence of vaccine responders among PWH. No clinical outcome was evaluated [ 106 ]. An analysis from the same cohort shows that dysfunctional peripheral antigen-specific T helper cells are associated with this impaired response and may be affected by ageing and HIV infection [ 107 ].

Regarding the tetravalent inactivated vaccine, no data regarding PWH are available. However, encouraging data from the trivalent vaccine among PWH and data regarding the tetravalent vaccine among the general population support safety and efficacy of the tetravalent vaccine among PWH [ 108 , 109 ].

Regarding safety, no differences have been seen in the adverse events in PWH and the general population. On the impact of vaccination on HIV viral load and CD4 cell count, controversial results have been published. Some authors showed HIV viral load rebound and a decrease in CD4 cell count after vaccination for Influenza. The HIV rebound has been attributed to the activation of quiescent HIV-infected CD4 cells. However, most of these studies were conducted between 1995 and 2010, when Integrasis inhibitors were unavailable [ 110 ].

The available literature pushes towards promoting vaccination among PWH. However, further studies are needed to assess the safety and efficacy of the quadrivalent inactivated Influenza vaccine among children and adults living with HIV.

2.5. Measles Morbillivirus

Measles is a severe disease caused by a Morbillivirus. It is highly contagious and particularly threatening for immunocompromised individuals [ 111 , 112 , 113 , 114 ]. Its incidence has been decreasing since the introduction of an effective vaccine; however, the reluctance to vaccine uptake is undermining the achievement of herd immunity in many countries [ 115 , 116 ]. Measle vaccination is part of the routinely administered vaccines during childhood. Its immunogenicity and safety among children living with HIV and exposed uninfected children have been studied in past years.

A systematic review published in 2019, including only randomized control trials and cohort studies with HIV-negative children matching cohort, reported good immunogenicity with greater waning in children with HIV [ 117 ]. This is consistent with what was reported for other vaccines given before immune recovery. Immunologic recovery, intended as the recovery in the CD4 cell count, in children, is achieved through naïve cells; thus, immunity acquired with vaccines administered before immunologic recovery cannot be re-established (differently from what we can see in adults PWH). These findings support the administration of a booster vaccine after immunologic recovery.

Interesting data emerged from another review from the same period, including cross-sectional studies, case reports, and case series. The Authors reported pooled data suggesting a better response to the vaccine from children on ART and with rapid ART initiation. In comparison, a poorer response was recorded when ART was differed or not prescribed. Despite the small sample size and the numerous confounders, these data reinforce the need to start treatment promptly in children living with HIV [ 118 ]. In addition, confirmation came from a recently published prospective study; during a two-year follow-up, Bruzzese et al. reported an 87% coverage among children with HIV on stable ART, with better response among children who received the vaccine after starting ART [ 119 ]. Regarding safety, no serious adverse events were reported in the two reviews. However, long follow-up data on immunogenicity and long-term efficacy are missing [ 117 , 118 ].

Regarding adults and adolescents, Loevinsohn et al. published a systematic review in 2019, including 9607 PWH. Immunogenicity was highly variable across the studies, significantly improving after ART introduction. However, despite complete ART coverage, the waning of immunity reaching 50% was also reported. Nevertheless, no severe adverse events were reported [ 120 ]. In this regard, only a case of vaccine-strain severe pneumonia in an HIV-infected young adult is well known; in this case, the CD4+ cell count was “too few to enumerate” when receiving the vaccine [ 121 ].

Studies reported are widely variable, and the characteristics of people included are heterogeneous; thus, more rigorous investigations regarding immunogenicity, efficacy, and safety of the measles vaccine among adults PWH are advocated. Despite the lack of punctual data on long-term immunogenicity and efficacy, based on severe outcomes of Morbillivirus infection and safety and immunogenicity data from cohort studies and randomized trials, the measles vaccine is recommended by HIV guidelines in PWH with CD4+ count >200 cells/mm 3 and on stable ART [ 102 , 104 ]. Given the low rate of Morbillivirus antibodies among the population [ 122 , 123 , 124 ], far from reaching herd immunity, the pros and cons of recommending vaccination should be considered when evaluating a new patient.

2.6. Mpox Virus

Mpox virus (MPV) is a zoonotic orthopoxvirus that is in the same genus as variola virus (causative agent of smallpox), vaccinia, ectromelia, camelpox, and cowpox viruses. In particular, MPV is considered the most important orthopoxvirus infecting human beings since the eradication of smallpox, confirmed by WHO in 1980 [ 125 ].

MPV was identified in 1958; however, the first documented human infection was described in 1970 in a 9-year-old child from the Democratic Republic of Congo [ 126 ].

Since 1970, monkeypox has continued spreading in central and western Africa, which is now endemic. The first outbreak in Western countries was in the United States in 2003. Since then, sporadic outbreaks have been reported in several countries [ 127 ]. The most recent outbreak dates to May 2022 and is still ongoing; in this case, however, the person-to-person transmission would seem to be the main route of contagion, unlike the previous outbreaks [ 128 ].

The disease caused by MPV infection is usually characterized by a febrile prodrome with lymphadenopathy, headache, and fatigue (typically 0 to 5 days) followed, after 1 to 3 days, by a vescicopapular rash with lesions that generally start on the face and then spread to the whole body (including palms and soles). In addition, many atypical cases have been reported during the current outbreak, with skin lesions mainly localized at oral and anogenital levels, probably due to the sexual transmission route [ 129 ].

In most cases, the infection progresses benign, with complete healing after 2–4 weeks. However, cases of severe disease and complications have been described. The risk of developing a more serious disease also correlates with the patient’s immune status.

From preliminary data regarding the current outbreak, it seems to be a connection between MPV infection and HIV. Thornhill et al. reported that of 528 people infected between April and June 2022, 41% had HIV infection [ 130 ].

Even before 2022, data from Africa had shown that in people with uncontrolled HIV, especially when they presented with AIDS features, the course of monkeypox was more severe (e.g., more extensive lesions, more significant complications, and increased mortality) [ 131 ]. On the contrary, this discrepancy has not been highlighted for PWH on ART [ 132 ].

Currently, there are two types of vaccines against smallpox and MPV: a replication-deficient modified vaccinia Ankara (MVA) vaccine and a replication-competent smallpox vaccine (ACAM2000).

The MVA vaccine is a second-generation smallpox vaccine. It represents the first choice due to its excellent safety profile, even in immunocompromised people. It is administered subcutaneously in two doses, 28 to 35 days apart. However, intradermal administration might be considered in outbreak situations if supplies are limited, as it requires a lower dose [ 133 ].

Greenberg et al. evaluated the safety and immunogenicity of MVA as a smallpox vaccine with a phase I/II clinical study comparing the safety and immunogenicity of MVA in 91 vaccinia-naive HIV-infected subjects (CD4+ T-cell counts, >350/mm 3 ) and 60 uninfected subjects [ 134 ]. To measure the potential efficacy of MVA, the ability to boost the memory response in people previously vaccinated against smallpox was evaluated by enrolling vaccinia-experienced HIV-infected and HIV-uninfected subjects in two additional groups [ 134 ]. They found that MVA was well tolerated and immunogenic in all subjects, with an antibody response comparable between people without HIV (PWoH) and PWH. In 2020, Overton et al. conducted a phase II trial on PWH, enrolling 87 participants [ 135 ]. They were divided into three groups: (i) people who received two standard doses on weeks 0 and 4; (ii) people who received two standard double doses on the same schedule in the double dose; (iii) people who received standard doses on weeks 0 and 4 weeks, plus a standard boosted dose at week 12. No differences in safety and immune response have been reported in the three groups. Therefore, the authors concluded that a booster dose does not appear necessary.

On the contrary, Pugliese et al. propose to perform the third dose for people with a CD4 cells count below 200 cells/mm 3 or 15% [ 136 ].

Agunbiade et al. recently conducted a cohort study of 10,068 (including also PWH) high-risk people who received MVA-BN vaccination [ 137 ]. They registered only 15 cases of Mpox, and 3 were HIV-positive. To note, the median time between vaccination and Mpox occurrence was 4 days (IQR 3–9).

The ACAM2000 vaccine, approved in 2007 to replace the original Dryvax vaccine used to eradicate smallpox, is a replication-competent vaccine with high immunogenic power. However, it can only be used in specific cases due to the frequent occurrence of severe adverse events secondary to the injection (acute vaccinia syndrome, postvaccinal encephalitis, progressive vaccinia, eczema vaccinatum, generalized vaccinia, and cardiac complications). The risk of developing these adverse events is particularly high in people with immunodeficiency and chronic skin diseases; therefore, these vaccines are contraindicated in PWH and diagnosed with atopic dermatitis [ 138 ].

Adverse events occurring after vaccination with replication-competent vaccines seem to be closely related to the immune status of the subject. In a study by Tasker et al. of 10 individuals with undiagnosed HIV-1 infection and CD4 counts >200 cells/mm 3 at the time of smallpox vaccination, none developed adverse events [ 139 ]. On the other hand, in a case report by Redfield et al., the patient who developed disseminated vaccinia had a CD4 cells count below 25 cells/mm 3 and active cryptococcal meningitis [ 140 ]. Therefore, in the interim Guidance for Prevention and Treatment of Monkeypox in Persons with HIV Infection, O’Shea et al. do not recommend using ACAM2000 in PWH for the risk of severe adverse effects [ 141 ].

In conclusion, the development of third-generation vaccines such as MVA has made it possible to expand the subjects to whom smallpox and MPX vaccines should be administered, including PWH.

2.7. Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2)

Severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) belongs to the coronavirus family and shares 79% sequence with SARS-CoV [ 142 ]. The main symptoms of Coronavirus Disease 19 (COVID-19) are fever, cough, and dyspnoea; a low proportion complains of gastrointestinal symptoms, anosmia, dysgeusia, headache, and skin lesions [ 143 , 144 , 145 , 146 , 147 , 148 , 149 ]. Most people develop asymptomatic or paucisymptomatic forms of infection [ 150 , 151 ]. However, the disease can evolve into a life-threatening systemic inflammation, respiratory failure, and multiorgan dysfunction [ 152 , 153 , 154 , 155 ]. Several studies have been conducted to evaluate if having an HIV infection represents a risk factor for developing severe disease. People with HIV with low CD4 cells count or detectable HIV-RNA seem to have an increased risk of severe COVID-19, while people with an undetectable HIV-RNA and a CD4 count higher than 200 cells/mm 3 appear to have the same risk as people without HIV [ 156 , 157 , 158 ]. For these reasons, having HIV was considered among the conditions prioritized for receiving a vaccination and eligible for early antiviral treatment against SARS-CoV-2 [ 159 , 160 ].

In addition, some studies showed that HIV treatments could act against SARS-CoV-2 [ 161 , 162 ]; in particular, treatment with tenofovir disoproxil fumarate (TDF)/emtricitabine (FTC) seems associated with a lower risk of infection and disease progression [ 163 , 164 ].

At the end of 2020, the first vaccine against SARS-CoV-2 was already available. Currently, nine vaccines have been approved by the WHO and administered worldwide [ 165 , 166 , 167 , 168 , 169 , 170 , 171 , 172 , 173 , 174 ], with many others approved only in one country (e.g., EpiVacCorona fully approved in Turkmenistan) or whose trials are still ongoing [ 175 ].

Several studies have evaluated the vaccine acceptance, efficacy, and safety in PWH.

Only one trial to investigate the efficacy of SARS-CoV-2 vaccination in PWH has been conducted, particularly on the AZD1222/ChAdOx1 vaccine. In the interim analysis, they presented data about 103 PWH (52 received vaccine, 51 received placebo) and 58 PWoH (29 received the vaccine, 29 received placebo). All PWH had an undetectable HIV-RNA and a CD4 cells count above 350 cells/mm 3 . In the interim analysis, the authors compared 54 PWH with 50 PWoH who received two vaccine doses. They found that PWH showed cross-reactive binding antibodies to the beta variant and wild-type Asp614Gly. High responders retained neutralization against beta [ 176 ]. In the final analysis, they compared 54 PWH who received two doses with 50 PWoH. They have not found a correlation between the magnitude of anti-spike IgG and CD4 cell count, and there is no difference between the two cohorts [ 177 ].

More studies have been conducted on mRNA vaccines BNT162b2 and mRNA-1273. Schmidt et al. found a significantly lower level of SARS-CoV-2-specific IgA in PWH than in PWoH, indicating a moderately lower functionality of the humoral vaccine response [ 178 , 179 ]. Likewise, Hefdtal et al. and Xu et al. showed that PWH had a lower level of IgG than PWoH [ 179 , 180 ]. Several studies confirmed these data [ 178 , 181 ].

Other studies found a significant difference in neutralizing antibody responses between PWH with a CD4:CD8 ratio < 0.5 or less than 200/250 CD4 cells/mm 3 [ 182 , 183 , 184 , 185 , 186 ]. On the contrary, Portillo et al. found no evidence of poorer viral neutralization in PWH compared to PWoH [ 187 ].

Many of these studies, and we agree with them, concluded that PWH might become a target population for prioritization to receive booster vaccinations.

Regarding Ad26.COV2.S, Khan et al. enrolled 73 PWoH and 26 PWH, and as a comparison group, they included unvaccinated participants (28 PWoH and 34 PWH) with prior documented SARS-CoV-2 infection. They found a similar neutralization response in both groups [ 188 ].

About the inactivated vaccine, Coronavac and BBiBP CorV, Netto et al. conducted a cohort study including 215 PWH and 296 PWoH. They found that people with less than 500 CD4/mm 3 had a lower antibody level than people with more than 500 CD4/mm 3 [ 189 ]. In addition, they found lower S-RBD-IgG antibody seropositivity rates and levels in PWH than in PWoH. Similar results were found by Zeng et al. and Liu et al. [ 190 , 191 ]; however, they found a lower antibody level in people with less than 350 CD4 cells/mm 3 .

Regarding the other inactivated vaccine, WIBP-CorV, Zou et al. found a delayed and low immunogenicity peak in PWH compared to PWoH; however, no significant difference was found in six-month immunogenicity between the two groups [ 192 ].

Finally, Gushchin et al. reported data about the Sputnik vaccine, including 24,423 PWH. Of them, 2543 (10.4%) were fully vaccinated, 17,592 (72.0%) were unvaccinated, and 4288 (17.5%) received only one dose. They found a general vaccination efficiency of 76.3%, while in PWH with more than 350 CD4 cells/mm 3 , it was 79.4%. In addition, vaccination avoided hospitalization in 90.1% of cases and gave protection from moderate or severe disease in 97.1%. For the delta variant, they observed a reduction in action (efficiency 65.3%, avoided hospitalization 75.7%, and protection from moderate/severe disease 93.1%) [ 193 ].

Most of the studies present in the literature have not reported notable adverse events. In the AZD1222 trial, the authors have not reported any serious adverse events. At the same time, local and systemic reactions occurred during the first seven days after vaccination. The most common were pain at the injection site (49%), fatigue (47%), headache (47%), and malaise (34%) [ 176 ]. However, some studies reported a detectable HIV-RNA in a part of the vaccinated subject in the following months [ 187 ]. In the Gianserra et al. study, one patient vaccinated with BNT162b2 developed a reversible sensorineural hearing loss 24 h after boosting [ 185 ]. Finally, Chaabouni et al. reported a case of herpetic meningoencephalitis after having received one dose of inactivated vaccine [ 194 ]. Atiyat et al. reported a case of a 36-year-old man with HIV that had a Varicella-Zoster Virus (VZV) reactivation two days after he received the second dose of BNT162b2 vaccine. To note, he had a low CD4 cell count (158 cells/mm 3 ), and he was not on ART (HIV-RNA 20600 copies/mL) [ 195 ].

In conclusion, many studies have been published on SARS-CoV-2 vaccination in PWH. The majority agree that the neutralizing antibodies level was lower in PWH than in PWoH, especially when a low CD4 cell count was present. However, the sample size in many studies is small; for this reason, we believe that other studies are needed, with larger sample sizes, to better understand the different vaccines’ efficacy. Until then, PWH represents a high-risk population, and they should have priority in receiving the boosting doses.

2.8. Varicella-Zoster Virus

Varicella-Zoster Virus is one of the known herpes viruses which infect humans. The infection confers life-long immunity; however, the virus remains latent in the ganglia and can reactivate. It can provoke two different clinical diseases. The first infection (Varicella or chickenpox) leads to a vesicular rash that usually spreads to the whole body, particularly affecting the face and trunk. While it is usually a self-limited disease, complications such as soft tissue infection, pneumonia, hepatitis, and encephalitis may affect at-risk individuals (e.g., immunocompromised and pregnant women). Herpes Zoster (HZ) reactivation (shingles) usually involves one or two contiguous dermatomes with a painful vesicular rash; among its complications, postherpetic neuralgia is common in older and immunocompromised patients; eyes, visceral, and neurological involvement are also possible. In pregnant women, HZ may cause foetus injuries [ 196 ].

Herpes Zoster has always been common among PWH before the introduction of ART. Ever since, its incidence has been declining [ 197 ]; however, PWH are still at higher risk of HZ and its complications compared to the general population [ 198 ]. Moreover, in people with VZV or HZ, the treatment must be promptly started to be effective. However, even in the best conditions, it is unlikely to protect from post-herpetic neuralgia and other complications alone [ 199 ]. Thus, prevention remains the best chance to reduce the burden of the disease, especially on immunocompromised patients.

Regarding chickenpox prevention, two vaccines are available in Europe: Varivax and Varilrix, both live-attenuated vaccines. After reconstitution, one dose (0.5 mL) of Varivax contains no less than 1350 UFP VZV live-attenuated Oka/Merck strain. After reconstitution, one dose (0.5 mL) of Varilrix contains no less than 10 3.3 PFU VZV live-attenuated Oka/Merck strain. Guideline recommendations are summarized in Table 6 .

Comparison of five HIV guideline recommendations for the Varicella-Zoster vaccine administration.

NA: not available at the moment of guidelines publication. NP: not present.

Several data regarding the safety and efficacy of these vaccines among the general population are available. On the contrary, few data about using live-attenuated VZV vaccines among PWH can be found in the literature. A systematic review including all published literature up to 2013 conducted by the World Health Organization (WHO) confirmed their efficacy in preventing disease of any severity in immunocompetent individuals. The same review reported a possible benefit for HIV-infected children; nonetheless, more evidence was warranted to clarify its role in this population [ 200 ]. While further studies were later published regarding safety and efficacy among children living with HIV [ 201 ], there are almost no data on adult PWH. One study conducted to assess the role of attenuated VZV vaccine as a booster to prevent HZ among adult PWH suggests its safety and good tolerability among this population [ 202 ]. Nonetheless, given the high risk of a possible fulminant or complicated chickenpox course and relying on safety and efficacy data among children, vaccination is recommended in seronegative individuals with ≥200 CD4+ cells/mm 3 [ 102 , 104 ].

Regarding HZ reactivation, live-attenuated VZV vaccines have been used as boosters in children and adults living with HIV [ 201 , 203 ]. Weinberg et al. enrolled 82 subjects with positive serology for VZV; the first group included PWH on stable ART and with >400 CD4+ cells/mm 3 , and the second included PWH with CD4 cells count between 201 cells/mm 3 and 400 cells/mm 3 at study entry, and one cohort of HIV-negative subjects. In each cohort, subjects were randomized to Varivax or placebo: the study reported excellent tolerability and moderate immunogenicity in PWH enrolled.

In 2006, the first vaccine against HZ was licensed (Zostavax)—a live-attenuated vaccine. After reconstitution, one dose (0.65 mL) contains no less than 19,400 PFU VZV live-attenuated Oka/Merck strain. Due to its characteristic, few studies are available among immunocompromised patients, including PWH. Therefore, a randomized, double-blind, placebo-controlled, multicenter study has been conducted to assess the efficacy and safety of the heat-attenuated formulation among PWH with less than 200 CD4+ cells/mm 3 within 90 days before the first dose administration; four doses were administered approximately 30 days apart. Although the vaccine was safe and well-tolerated, results were unsatisfactory regarding immunogenicity, with a weak immunogenic response unlikely to be protective against VZV reactivation [ 204 ]. More encouraging results were reported from PWH with a better immunologic profile. A randomized, double-blind, placebo-controlled trial in virally suppressed PWH, and with at least 200 CD4+ cells/mm 3, demonstrated the safety and immunogenicity of HZ live-attenuated vaccine even though the 24-weeks follow-up could not guarantee the durability of this effect [ 205 ]. However, being a live-attenuated vaccine, some concerns exist about its use in an immunocompromised population.

The recently approved recombinant, adjuvanted HZ vaccine (Shingrix) may be a more suitable alternative. The adjuvanted VZV glycoprotein E subunit vaccine was recently authorized for immunocompromised adults [ 102 , 104 ]. Results from older adults demonstrated efficacy and tolerability [ 206 , 207 , 208 ]. A phase 1/2a, randomized, observer-masked, placebo-controlled, multicenter trial conducted among PWH confirmed Shingrix’s effectiveness in soliciting an immune response. A two-doses course was associated with a significant increase in cellular and humoral immunity compared with a single dose, while a third dose was reported as not significantly beneficial [ 209 ]. The same study reported excellent tolerability, with pain at the injection site and fatigue as the most reported symptoms; no vaccine-related severe adverse event leading to withdrawal was reported [ 209 ].

Safety and tolerability among immunocompromised individuals were confirmed by a review of six trials addressing this wide population. Data from oncologic, transplanted, and seropositive patients were reported, confirming the clinically acceptable profile of the vaccine [ 210 ]. In addition, real-life data from the Medicare population (n = 15.589.546) confirmed the beneficial impact of Shingrix among immunocompromised individuals. Izurieta et al. reported significantly higher immunogenicity following the second dose, despite lower effectiveness than reported among the general population (64.1% vs. 70.9%) [ 211 ]. However, the authors did not provide which were the underlying conditions of the subjects involved. In addition, the study was published only two years after licensure; thus, further surveillance data should follow to confirm preliminary results.

In conclusion, we have different strategies to address Varicella and Zoster reactivation among a fragile population such as PWH. The newest vaccine (Shingrix) seems promising, effective, and well-tolerated. However, long-term, real-life data are needed to better inform vaccination campaigns.

2.9. Neisseria Meningitidis

Neisseria meningitidis is a gram-negative, facultatively anaerobic diplococcus that exclusively infects humans. It was first isolated in 1887 from observing the cerebral spinal fluid of patients with meningitis [ 212 ].

It is the etiologic agent of severe meningitis and systemic infections that primarily affect children and young adults, named invasive meningococcal disease (IMD). Five main serogroups cause IMD: A, B, C, W, and Y. According to the last ECDC report, updated in 2018, the notification rate remained relatively stable in the last three years. Serogroup B is confirmed to be responsible for most cases (51%), followed by serogroups W and C; Serogroup A is more common in Africa, Asia, South America, and ex-Soviet Republics; Serogroup Y accounts for about one-third of cases in the United States [ 213 ].

Fever, myalgias, nausea, vomiting, and headache characterize the initial symptomatology of IMD. Subsequently, loss of consciousness, confusion, meningism, and hemorrhagic rash may onset. Treatment should not be delayed more than one hour to reduce the mortality risk; thus, a prompt diagnosis is crucial [ 214 , 215 ].

People with HIV are at increased risk of developing invasive N. meningitidis disease, regardless of sexual habits [ 216 ]. Some factors appear to be associated with an increased risk of IMD in PWH. Among these, the higher risk of bacteremia compared to patients without HIV infection is relevant [ 217 ]. The mortality rate seems directly proportional to the CD4 cell count, suggesting that the elevated risk for IMD among PWH is at least partially a result of HIV-related immune suppression [ 216 ]. In addition, atypical infections due to N. meningitidis, such as septic arthritis, have been described in PWH [ 217 , 218 ].

Three types of vaccine are available: the tetravalent MenACWY, against the serogroups A, C, W, and Y; the monovalent vaccine against B serogroup (MenB); the monovalent glycoconjugate-vaccine against meningococcal C vaccine (Menjugate) [ 219 ].

The tetravalent vaccines are as follows: (i) MenACWY-D (Menactra), that it is a conjugate vaccine with polysaccharide diphtheria [ 220 ]; (ii) MenACWY-CRM (Menveo), a conjugate vaccine with the oligosaccharide diphtheria CRM 197 [ 221 ]; (iii) MenACWY-TT (MenQuadfi), a conjugate vaccine with polysaccharide tetanus toxoid [ 222 ].

The available vaccines against serogroup B are as follows: (i) MenB-FHbp (Trumenba) consists of two purified recombinant lipidated FHbp antigens, one from each FHbp subfamily (A and B) [ 223 ]; (ii) MenB-4C consists of three recombinant proteins (neisserial adhesin A [NadA], factor H binding protein [FHbp] fusion protein from subfamily B, and neisserial heparin-binding antigen [NhbA] fusion protein), and outer membrane vesicles (OMVs) containing outer membrane protein porin A (PorA) serosubtype P1.4 [ 224 ].

All guidelines suggest vaccination for N. meningitidis in PWH; however, each guideline suggests a different approach. For example, EACS suggests performing the quadrivalent vaccination every five years according to the risk factors and does not recommend the MenB vaccine [ 24 ]. NIH suggests vaccinating all PWH over 18 years old with the quadrivalent vaccine, while MenB is not routinely indicated [ 23 ] ( Table 7 ).

Comparison of five HIV guideline recommendations for the Neisseria meningitidis vaccine administration.

However, few studies have been conducted among PWH to assess the immunogenicity in this specific population. Siberry et al. conducted a Phase I/II trial among children and youth with HIV (11–24 years old). One dose of quadrivalent Polysaccharide Diphtheria Toxoid Conjugate Vaccine was administered to all participants (317). Then, all people with CD4 cells < 15% received a second dose at 24 weeks; the other participants were randomized to receive or not a second dose. They found that immunogenicity was weaker than in the general population, especially for people with low CD4 cells count and detectable viral load [ 225 ]. These data were confirmed by Lujan-Zilbermann et al. [ 226 ]. Frota et al., in their study among children and young PWH, found that one dose of the quadrivalent vaccine was insufficient and suggested performing the second dose [ 227 , 228 ]. These studies also showed the excellent safety of the vaccines with a very low incidence of adverse events [ 225 , 226 , 227 , 228 ].

Regarding the MenB, no studies have been conducted on PWH to assess immunogenicity and safety. Of interest, in a recent study, Raccagni et al. evaluated the incidence of Neisseria gonorrhoea in MSM living with HIV with a recent history of sexually transmitted infections [ 229 ]. They observed how, during the follow-up (median 3.8 years), people who received two doses of MenB vaccination had a 44% reduced risk of gonorrhoea, confirming what was described by Paynter et al. and Petousis-Harris in the general population [ 230 , 231 ].

Further studies are needed to assess these vaccines’ efficacy in adult PWH. However, due to its high efficacy, vaccination should be recommended for all PWH, especially those with an increased risk of infection [ 232 , 233 ]. A recent review conducted in the United States shows a relatively low vaccination rate, even in newly diagnosed patients [ 234 ]. In this regard, we believe that informing people about the cross-efficacy of the vaccine for gonorrhoea could be an incentive for vaccination and an opportunity for counselling about meningitis and sexually transmitted infections [ 235 ].

2.10. Pertussis, Diphtheria, and Tetanus

Pertussis (Whooping cough) is a highly contagious bacterial infection caused by Bordetella pertussis and mainly affects the high respiratory tract [ 236 ]. It is effectively preventable by inactivated vaccine, although it does not confer life-long immunity. Whooping cough is considered a childhood disease; however, its prevalence among adults may be underreported. Studies among adult PWH are anecdotal, but a cross-sectional seroprevalence study conducted in the United States showed a 1000-fold higher prevalence among PWH than the general population [ 237 ]. In addition, case reports show a severe course of the diseases among people with AIDS [ 238 , 239 ].

Diphtheria is caused by Corynebacterium diphtheriae and Corynebacterium ulcerans ; it affects the high respiratory tract and skin [ 240 ]. It is preventable thanks to the toxoid vaccine. Data regarding disease prevalence and severity among PWH are lacking, as are vaccine safety and efficacy among this population; however, it seems that PWH, especially with low CD4 cell count, develop a lower antibody titre than the general population [ 241 , 242 ].

Tetanus is caused by neurotoxins released by Clostridium tetani . It causes general rigidity and spasms, leading to respiratory and cardiac failure and death [ 243 ]. It is preventable through a toxoid vaccine, with a long, although not lifelong, lasting immunity; reinforcing doses are recommended every 10 years. It is not known if the clinical course and mortality rate differ in PWH compared to the general population; however, data regarding immunogenicity suggest a poorer immunological response in PWH. A trial published in 2019 reported a lower memory response in children with HIV not on ART, while a similar kinetic was reported in children with HIV on ART and children unexposed to HIV [ 244 ]. In addition, there was a greater waning in immunity; thus, earlier booster doses should be considered in children with HIV [ 245 ]. A study conducted in Senegal confirmed a lower immunogenic response in PWH than in the general population [ 246 ]. Dauby et al. estimated the durability of tetanus toxoid-specific seroprotection, finding a half-life of 9.9 years. In addition, in their analysis, people born outside Europe had a shorter half-life (4.4 years), probably due to their low CD4 cell count at the time of immunization and the low CD4 nadir. They concluded that longer intervals of booster vaccination, as recommended in the general population, might not be appropriate in this subgroup of PWH [ 247 ]. Regarding safety, no data regarding increased adverse events are reported.

Pertussis, diphtheria, and tetanus vaccines are often administered together in a pediatric (DTPa) or adult (≥7 years old) formulation with a reduced component of diphtheria and pertussis (dTpa). They can also be found combined with the polio vaccine in a tetravalent formulation (dTpaIPV).

In conclusion, all guidelines reported that the indication for these three pathogens is no different in people with HIV and suggested following standard recommendations.

2.11. Streptococcus Pneumoniae

Streptococcus pneumoniae is a Gram-positive bacteria with alfa- and beta-hemolytic features in aerobiotic and anaerobiotic conditions. It causes a broad spectrum of infections, such as pneumonia, meningitis, otitis, bronchitis, conjunctivitis, sepsis, osteomyelitis, and others [ 248 , 249 ].

HIV-related immunological deficiency exposes PWH to an increased risk of pneumococcal infections and severe manifestations [ 250 , 251 ]. The risk of pneumococcal infection is from 10- to 100-fold higher in PWH receiving and not receiving ART; the risk increases with a lower CD4 cell count (<350 cells/mm 3 ) [ 250 , 252 ].

To date, four different vaccines are available: 23-valent unconjugated purified polysaccharide vaccine (PPSV23), 13-valent vaccine conjugate vaccine (PCV-13), 15-valent pneumococcal conjugate vaccine (PCV15), and the 20-valent pneumococcal conjugate vaccine (PCV20). The first conjugate vaccine, PCV-7, is no more used ( Table 8 ).

Comparison between the four available vaccines for Streptococcus pneumoniae .

Several studies about the pneumococcal vaccine in PWH have been conducted with variable results.

The recommendation for the general population is to utilize either PCV20 alone or PCV15 in association with the PPSV23 [ 253 ]. However, HIV guidelines have different suggestions due to the lack of data in PWH. For example, EACS suggest administering one dose of any PCV vaccine [ 13 , 15 , 20 ] to all PWH according to national guidelines, even if they already received PPSV-23 [ 24 ]. In addition, they recommend one dose of PPSV-23 in those who received PCV-13 or PCV-15. NIH, on the contrary, suggests PPSV-23 in all people with more than 200 CD4/mm 3 . In those who received PCV-13, NIH suggests administering one dose of PPSV-23 [ 23 ] ( Table 9 ).

Comparison of five HIV guideline recommendations for the Streptococcus pneumoniae vaccine administration.

It was suggested that PPSV-23 might not be the appropriate vaccination strategy for PWH because of some characteristics of this vaccine. Specifically, it contains purified polysaccharide antigens of the pneumococcal capsule and produces immunity through activating B-cells without T-cells involvement. Because of this, no immune memory is produced, and adjunctive doses do not elicit an additional immune response [ 254 ]. On the other hand, conjugated vaccines like PCV stimulate B- and T-cell activation, providing a sustained immune memory.

Lesprit et al. enrolled 213 adults infected with HIV and randomized them to receive either one dose of PCV-7 followed by one dose of PPSV-23 after four weeks or one dose of PPSV-23 at week four. The two-dose group showed higher immune responses than those receiving only one PPV dose at weeks 8 and 24 [ 255 ]. Similar results were obtained by Feikin et al. in a randomized trial where they found a better immune response in those who received two doses of PCV-7 or one of PCV-7 and one of PPSV-23 versus a third group that received one dose of placebo and one of PPSV-23 [ 256 ]. In addition, Bhorat et al. conducted a trial on PWH by administering three doses of PCV-13 followed by one dose of PPSV-23 at 1-month intervals with good tolerability and showing that PWH achieved a significant immune response after the first dose of PCV-13, with only modest increases in antibody titres following the other doses.

The only clinical efficacy study was performed by French et al. from 2003 to 2007, involving both people with CD4 cell count lower and higher than 200 cells/mm 3 ; among the 439 PWH enrolled in the study, only 13% were receiving ART. Nevertheless, they found that in the group vaccinated with PCV-7, the one-year efficacy was 85% [ 257 ]. A meta-analysis by Garrido et al. conducted in 2020 concluded that the combination of PCV-13 and PPSV-23 has good immunogenicity; however, the durability of this vaccination remains unknown. In addition, data suggested delaying the PCV administration until the CD4 cells count is above 200 cells/mm 3 .

In 2022, Mohapi et al. published a randomized, double-blinded clinical trial to compare the immunogenicity and safety of PCV-15 and PCV-13; they included 302 PWH. PCV-15 was generally well tolerated; immune responses were elicited for all 15 pneumococcal serotypes. However, no clinical data about this vaccine are available.

In conclusion, there is scarce clinical evidence about the efficacy of PCV in PWH. Further studies are needed both for clinical efficacy and to assess the immunogenicity of the new PCV vaccine in this specific population. However, considering the severity of pneumococcal pneumonia among immunocompromised individuals, physicians should recommend the combination of PCV-PPSV, according to international guidelines. Special attention should be given to PWH with <200 CD4 cells/mm 3 .

2.12. Vaccines for Travel

The immunization of international travelers is mandatory to prevent the spread of infections between countries and reduce the risk of severe disease and death [ 258 ]. However, these vaccines’ acceptance is low [ 259 , 260 , 261 , 262 ]. Below, we briefly report the suggested vaccination for travelers and the available information and recommendation for PWH.

• - Cholera : it could be present in the area without a clean water supply or modern sewage system or in case of environmental changes due to natural disasters (such as tsunamis) or human-driven events (such as wars or massive migrations). People with HIV have a higher risk of contracting the infection and suffering severe consequences [ 263 ]. Many vaccines are available for cholera. CVD103-HgR (replicating—live-attenuated) has been proven safe and immunogenetic in PWH; however, it is not currently available worldwide [ 264 ]. According to the NIH, it could be administered in at-risk PWH with more than 200 CD4 cells/mm 3 . If CVD103-HgR is unavailable, according to BHIVA guidelines, WC/rBS vaccine (inactivated) could be administered. It is essential to know that PWH with less than 100 CD4/mm 3 may be expected to respond poorly to it [ 265 ].
• - Flu Vaccine : see paragraph “Influenza”.
• - HAV : see paragraph “HAV”.
• - HBV : see paragraph “HBV”.
• - Japanese encephalitis (JEV) : it is caused by a Flavivirus transmitted by mosquito bites. This virus is present only in Asia. In most people, it is asymptomatic; however, it is symptomatic in approximately 1 patient out of 250 infections. The severity of infection ranges from flu-like to encephalitis, which could be life-threatening in 20–30% of cases. Many vaccines for JEV are available worldwide (inactivated, live-attenuated, and live-recombinant) [ 266 ]. For PWH, the inactivated vaccine (IXARO ® ) is suggested. However, no study in adult PWH have been conducted, and only BHIVA guidelines provide recommendations regarding this vaccine [ 25 ].
• - N. meningitidis : see paragraph “ Neisseria meningitidis ”.

The vaccine against rabies is inactivated and administered in three doses. The vaccine induces satisfactory antibody production in more than 95% of vaccinated subjects. However, in PWH, the immunogenicity is influenced by CD4 count and viral load; in particular, low or absent antibody responses were reported in some patients with CD4 cell counts <250 CD4/mm 3 [ 267 , 268 ].

• - Polioviruses : three serotypes of polioviruses could infect humans. They spread through the fecal–oral and respiratory routes. They usually cause gastrointestinal symptoms, but in some cases, they could give severe neurological manifestations, including meningitis, encephalitis, and poliomyelitis syndrome with acute onset of flaccid paralysis. Two vaccines against polioviruses are available [ 269 ]; however, the live-attenuated oral poliovirus vaccine is not used anymore in many countries due to its side effects since it could cause vaccine-associated paralytic polio, especially in immunocompromised people, including PWH [ 270 ]. The trivalent inactivated poliovirus vaccine is the most used, combined with tetanus and the diphtheria toxoid (Td/IPV). People with HIV should receive three doses if they are not vaccinated or have an uncertain vaccination history, followed by two booster doses after 5 and 10 years. Then, a booster every 10 years is suggested.
• - Tuberculosis: it is present worldwide, with a higher incidence in Asia, Africa, and South America. In most people, it remains latent; however, latent TB could reactivate in 5–15% of immunocompetent adults [ 271 , 272 ]. In PWH, the risk of activation is higher, especially in those people with a low CD4 cells count. The Bacille Calmette-Guerin (BCF) vaccine is a live-attenuated vaccine from Mycobacterium bovis strains. Its efficacy is controversial since the protection rate varies widely among different trials [ 273 ]. According to HIV guidelines, the BCG vaccine is contraindicated in PWH regardless of CD4 cells count, ART, viral load, and clinical status since some studies described a higher risk of local and systemic complications among this population, including disseminated BCG [ 21 , 25 ].

On the contrary, VI vaccination is recommended in all PWH and should be performed at least one week before exposure [ 274 ].

• - Yellow fever: it is caused by a virus transmitted through the bite of an infected Aedes aegypti mosquito. It is present in tropical and subtropical regions of Africa and South America. The infection is often symptomatic [ 275 ]; however, it sometimes causes severe hepatitis, jaundice, and bleeding, with high mortality rates. It is not known if PWH have an increased risk of severe forms. The vaccine contains a replicating live-attenuated virus. A single dose protects around 90% after 10 days and 99% after 30 days [ 276 ]. In 2014 a systematic review investigated the immunogenicity and safety of the yellow fever vaccine in PWH. They found that PWH (compared with PWoH) developed significantly lower concentrations of neutralizing antibodies in the first year post-immunization; however, the decay patterns were similar for recipients regardless of HIV infection. Furthermore, no study patient with HIV infection suffered serious adverse events due to vaccination [ 277 ]. However, since it contains a replicating live-attenuated virus, this vaccine is suggested only in PWH with more than 200 CD4/mm 3 and aged <60 years old.

In conclusion, many vaccines are not recommended in PWH with low CD4 counts. A thorough analysis of the pros and cons is needed for these patients. In addition, we recommend postponing travels, when possible, until immunological recovery.

3. Conclusions

Vaccinations represent a powerful tool to avoid vaccine-preventable infectious diseases also in PWH. Therefore, clinicians should carefully collect the history of vaccinations in all new patients and regularly check the presence of antibodies for each vaccine-preventable pathogen, especially in people with low CD4 numbers, who have a higher antibody-waning rate. Although vaccinations for PWH are strongly recommended, data on immunogenicity, tolerability, and clinical efficacy are limited for this specific population. For this reason, further studies are needed to assess these features and harmonize different guidelines. In addition, the acceptance rate can and must be improved.

Funding Statement

This research received no external funding.

Author Contributions

Conceptualization: A.D.V., A.C. (Agnese Colpani), A.C. (Andrea Calcagno) and G.M. (Giordano Madeddu). Resources: all authors; Writing—original draft preparation: all authors; writing—review and editing: all authors; supervision: A.C. (Andrea Calcagno) and G.M. (Giordano Madeddu). All authors have read and agreed to the published version of the manuscript.

Institutional Review Board Statement

Informed consent statement, data availability statement, conflicts of interest.

The authors declare no conflict of interest.

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