Like an onion, there are many layers to HIV-related stigma.

Stigma can be internalized, directed at oneself, or it can manifest outwards.  Like an interstate, stigma can also move in both directions at the same time.  Consequences of stigma can impact a person, a relationship, or a community. Like an elevator, stigma can move up and down the age scale. The impact of stigma can have physical, emotional, and social effects on both HIV- and HIV+ men.

It seems to me there is a growing and widening divide between HIV+ and HIV- men.  Like an infection, it seems to be only getting worse.  

I find myself being a part of the very stigma I detest,  I have become an oxymoron and my behavior has become hypocritical of what I know to be right.   I would much rather become friends with someone with HIV than someone without HIV. For me, friendships with HIV- men too often become mentally exhausting; I get tired of the endless HIV-related questions, the answer to which they should already know or could easily Google: 

“Can I get HIV from sucking dick?  Can I get HIV from kissing?  Are you going to die?”

Ignorance and laziness are two qualities I detest.  I don’t believe an HIV- person should become concerned about finding the answers to such questions only after meeting someone who has HIV.  I feel like someone without HIV just doesn’t get it.  And yet...I feel a separate yet equal responsibility to share my knowledge when such questions are asked.  I feel frustrated and yet worrie, that if I do not answer their questions then they might not ever take the time to find out otherwise, and thus by giving into my frustration I could very well be allowing them to live in dangerous ignorance. 

In my experience, the one way to drop a grenade on a potential platonic gay friendship is to disclose your HIV status.  All of a  sudden the fear of guilt by association comes into play.  I believe HIV- guys fear others will think they themselves are HIV+ just by being friends with or dating someone with HIV. Both HIV-positive and HIV-negative men screen prospective social or sexual partners for compatibility, either in a platonic or sexual sense.  Disclosure of HIV within the gay community begins the process of “AIDS apartheid”.  

When I was first diagnosed with HIV, I tried to remain within the social scene.  I went to the club, I went to dinner with the gay boys, I did the whole shmooze and social climbing thing.  But too often I became known as “the guy with AIDS”.  Walking into a club or into any gathering with other gay guys, I could tell instantly if they had been gossiping about me. One glance from them and I knew they knew about my HIV status and always there was a flicker of panic as I approached the herd of HIV- guys.  Or the inevitable and too often repeated reaction to my disclosure  “Oh, I will be right back!”, only to see them in a little while, avoiding you like the plague (pun intended).

One can only tolerate or handle such subtle ostracizing before you throw your hands up and ask yourself why you keep putting yourself into a situation where you are shunned and unwanted. 

I often wonder why gay guys perpetuate the very type of stigma and social sorting that we have been victims of by the population at large. One would think that based on stigma from heterosexuals and/or right-wing conservative and/or religious institutions, that gay men would be more empathetic.  One would think they would be the first ones to offer support, friendship, or a shoulder when they learn of their fellow brother’s HIV diagnosis. 

Yet, there still exists a divide within the gay community by which HIV- gay men either explicitly or implicitly blame us for HIV, who still choose to see us as dirty. A glance at any gay hook-up or gay dating website will show you how very frequently one states their desire for a “clean”, i.e. HIV-, person...implying those who are not HIV- are dirty and damaged. 

After repeated rejections, no matter how polite, one begins to realize the hurt of rejection can be avoided simply by withdrawing from the gay world, as it appears there is no room for HIV+ people within the general gay culture. 

Even within the HIV+ gay male community there still exists stigma based on age.  It seems as though the ageism that is present in the gay male population at large (i.e. HIV- men) has bled into the HIV+ community.  A recent blog post by an under-30 HIV+ person took offense and aim at men who became HIV+ in the early years of the epidemic. This young person basically took the position that older gay men with HIV are a real bummer.  He stated that they offend him because he felt as though older HIV+ men were too preachy and he devalued their experience by saying it was time to stop focusing on death.  The generational divide was especially confusing to me as someone whose age falls between twinky  and older. 

Stigma even comes from within.  The very worst stigma I experience is the stigma I throw at myself.  I have gained weight since my diagnosis and since I have quit smoking.  I weigh more now than I ever have in my life and when I look down at my swollen stomach, I feel such a very distinct and visible disconnect from gay culture.  I am the opposite of a mirror image of the physical being I used to be, back before I contracted HIV, back when I was still attractive and could still seduce a man.  The degradation of my physicality has a direct impact on me socially and emotionally.  I never want to go where there are other gay guys.  To see them in their teensy tiny v-necked t-shirts and their super skinny jeans would only serve as a reminder of who I am not.  My social life since HIV is a textbook example of avoidance strategies.  In my current relationship I do not ever want to be intimate with my partner out of self-disgust in my physicality. 

Such serosorting, HIV segregation, or AIDS apartheid can actually place an HIV- in more danger of contracting HIV through infrequent HIV testing, lack of HIV status disclosure, and the continued perception they are HIV-.  One infive gay guys with HIV don’t  know they have HIV.  The culture of segregation and silence perpetuates a horrific catch-22 of HIV infections.  I have heard too often a horny gay boy trust another person’s word when it comes to HIV disclosure.  Believing you are HIV- is NOT the same as actually being HIV-.

I have been in situations (years ago when I was still single) where a guy was more than willing to sleep with me, without HIV ever entering the conversation until I brought it up by disclosing.  I always wonder how often this happens, where someone who assumes himself to be HIV- tells their sex partner they are negative and then they have unsafe sex. Then I wonder if and when that other person contacts HIV if they think back to that unsafe encounter...or do they overlook the encounter because the other guy told him he was negative?  

Serosorting that results in seroguessing is not a safety behavior, it is a grenade waiting to explode...and the explosion of increasing HIV infections among gay men is the result of such silence and guesswork.  This stigma and fear of the negative consequences of an HIV+ diagnosis directly result in avoidance of HIV testing and counseling.  It appears as though many gay guys subscribe to the ignorance-is-bliss philosophy, and to hell with the consequences.

My personal experience in trying to educate gay men about HIV resulted in resounding silence.  Nobody wants to talk about it.  Gay guys become offended if you bring it up, believing you are accusing them of being a slut or drug addict or both, the whole time they themselves are more than likely not practicing safe sex each and every time.  To many of the head-in-the-sand gays, they are not at risk from getting HIV from their unsafe sex.  HIV is what happens to other people.  Until it happens to them.  

This article originally appeared on Jason’s own blog, Embracing Pozitivity, here.  

About the author: I am 38, gay male from Knoxville, TN who is not ashamed of my HIV+ status. I am optimism personified. I am strength realized. I am just me. 

Website: embacingpozitivity.blogspot.com Twitter @jjemcdonald.

Normally, I eschew Facebook “Like” contests and changing profile pictures en masse to show solidarity under the misguided notion that the modern equivalent of jingoistic chanting does anything to influence policy. Surprisingly, then, yesterday I changed my Facebook profile picture to a simple red square with a white equality symbol, as did seemingly everyone in the LGBT community I’m friends with, to demonstrate my support for opponents of Proposition 8 in California, who just wrapped up oral arguments in favor of gay marriage before the United States Supreme Court.

Originally started by the Human Rights Campaign, an organization I typically criticize for its lack of effect when it comes to advocacy and seeming dearth of actual programs helping LGBT kids, youth, adults, and seniors, this Facebook movement has grown to reflect that there are, seemingly, more of “us,” supporters of gay marriage, than there are of “them,” the opponents of gay marriage.

“At first you resisted. Now you’re all red, red, red,” messaged a friend of mine the minute I changed my profile picture. I admitted to him that I got on the Orwellian bandwagon, but I began to think about why, in this instance, I had a visceral, immediate desire to participate.

Frankly, I have a reputation in Philadelphia as a bit of a curmudgeon, the type of writer and critic who could have witnessed Jesus Christ turn water into wine and write down later, “The red was dry, the conversation was ultra liberal, and the speaker needs a haircut.” Yet, when it came to gay marriage, I was on board without a second thought, enthusiastically taking the lead of thousands of people before me. Upon reflection, I realize it is because I, like many others, am fed up with this false equivocation in American media and politics that, somehow, idiotic arguments deserve a seat at the table alongside thoughtful commentary.

For years, American media has strenuously attempted to give proper voice to those opposed to gay rights. Much like how those opposed to civil rights for African Americans had their arguments rooted entirely in their own queasiness with blacks, foes of gay marriage and, by extension, LGBT rights, seemingly have no proper argument aside from a red-faced, flustered, “But it’s…it’s…wrong!” And, much like how factually-challenged climate change denialists are given a speaking platform with nauseating regularity on Fox News, gay rights opponents are somehow put forth as though they have any substantive grievance or sound opinion that is rooted in anything aside from their own inherent bigotry. They do not.

At issue is whether or not homosexuals like I am should be allowed to, privately but officially, wed. This issue is not about whether or not you support leather chaps and bathhouses; this issue is not about whether or not you are conflicted on allowing transgender women to attend all-girls’ colleges; this issue is not about whether or not you are queasy about the fact that 40,000 children in California are currently living in same-sex households, as Justice Anthony Kennedy rightly pointed out this week; and, certainly, this issue is not about gay sex. Rather, this issue is about whether or not I as a human being am deserving of the same rights and privileges you are as a human being.

The fact that a conservative evangelical might find the fact that I like to kiss other men gross is irrelevant to this debate; the fact that, gross or not, this goes on and I cannot change this component of my identity as a human being is the essence of whether or not I deserve to be able to have my love publicly affirmed through marriage.

Contrary to the reprehensible, and completely discredited, notions propagated by gay conversion “therapists,” I cannot change my sexuality. In fact, if I could have changed my sexuality as a 13 year old gay boy growing up in a town called Quakertown, PA, obviously not the most progressive and cosmopolitan of rural Pennsylvania areas, I would have. Making the decision to live as a heterosexual would have been much easier; I would not have had to come to grips with the fact that society was telling me I was a faggot, an effete leftover from human evolution. If I could change my sexuality and produce a child with a woman naturally, I would be able to continue to pass along my mother’s DNA and my father’s surname; and, I could touch the hand of my son or daughter and feel my own blood, developed from thousands of years of mating on part of my German ancestors, my naval officer great great grandfather, my beauty queen mother, my NY Times crossword-puzzle addicted grandfather.

As reality would have it, however, my innate sexuality prohibits me from honestly doing this. Instead, I have, for years, had to figure out how to wed my physical attraction to other men along with my principles and desires as a human being. That is, try as I might, I cannot get pregnant by a man; and, as such, I cannot physically, bring together my DNA with the DNA of the man I love to produce a new human being worthy of the same rights and dignitites as my brother’s son, my nephew. And, while I can certainly, at least in some states that don’t outright ban gay adoption, adopt a child, I cannot produce one with the person I love just as my mother or brother have done.

While this is, at best, annoying and, at worst, tragic, I, and millions of other homosexuals like I am, have figured out that family is what we make it, that friendship is key to a life of happiness and love as a gay man, and that so long as the government concedes that I am not biologically inferior but, instead, biologically different than my straight counterparts, we can peacefully coexist, society and LGBT folks.

Today, however, and for the past several decades, there are entire segments of the American population who, despite these facts, have caused me and continue to cause young LGBT folks great sadness, anguish, and pain about their innate identities. We are told routinely that we are separate, different, and, logically then, inferior to heterosexuals. We are made to feel badly about the fact that we like to kiss other men; we are made to feel dirty for wanting to express our sexual and romantic identities publicly.

Specifically, I remember being called a faggot on Walnut Street for holding the hand of the boy I was dating when I was 18. And, immediately, we stopped holding hands; after all, it was totally inappropriate of us in this straight world to try to publicly affirm our affections for one another. Similarly, I was called a faggot and then punched in the face because I, unlike the 18 year old version of myself years earlier, passionately protested this slur last year. The difference between these incidents, along with their separation in time, is the fact that no reasonable or legitimately thoughtful person thinks either incident is okay today. Ten years ago, however, a good number of folks would say things like, “Well, you should be careful, you never know who is around.”

Everyday, we hear news that more and more Americans are supporting gay marriage. And, everyday, we hear news that more and more gay Americans want to get married. And, everyday, we hear the truthful argument against gay marriage coming out more precisely; that is, they simply have an issue with us faggots and their issue has nothing to do with public affirmation or love or extending rights guaranteed by the US Constitution to American homosexuals. Rather, opponents of gay marriage rely exclusively on their own personal “ick” factor in relation to homosexuality and pretty much every sexual and gender difference that isn’t straight, missionary style, and monogamous.

This opinion does not deserve a voice in thoughtful media or commentary. It belongs in the dust heap of history along with Plessy v. Ferguson’s “separate but equal” distinction in relation to different facilities, including drinking fountains, pools, and public schools, for blacks and whites. And, just as the Supreme Court overturned Plessy v. Ferguson with Brown v. Board of Education, the Supreme Court is positioned to affirm what everyone knows but what American media still has difficulty conveying.

Gay people are equal and deserving of the same rights and dignities as straight people. So, I changed my Facebook profile picture. And, I suggest you do too.

This article first appeared on Josh’s own blog here.

“All animals are equal: but some animals are more equal than others.”

George Orwell, Animal Farm 

At the end of March I attended the Positive Gathering in Vancouver. This event is hosted by Positive Living BC and brings together people living with HIV from across the province. I was struck by the diversity of the more than 100 people in attendance: men, women, straight, gay, young and old; all sharing and discussing the things that are important in our lives as poz folk. 

I wonder about the possibilities for this group. I think in some ways we are at best a social club and at worst a pesky insignificance in the scheme of public health. Health Authorities seem to consistently miss the point that HIV is about more than taking our meds and being “good little patients” – we are whole and complete people and our health and well-being depends on more than simply our viral load and CD4 counts. 

I attended a workshop on depression: standing room only. This speaks to me that we as people living with HIV have a collective concern about mental health – not specifically mental illness, but the anxiety and depression that accompany HIV and the uncertainty of our future. I’ve noticed that many people living with HIV feel isolated (or isolate) and I myself am known to “hermit” – preferring the sanctuary of my home to the risk of being “out there”. And I’m not a bar person, which in Victoria is one of very few social outlets. 

The effects of isolation are lost on public health officials. We can clearly make the argument that there are correlations between mental health and physical health, and yet this argument is specious to a system obsessed with counting things. As Einstein said, “Not everything that can be counted counts; not everything that counts can be counted.” In the scheme of it, we as positive people don’t really count. We are patients, not people regardless of the lovely chatter from researchers and well meaning physicians. 

It’s sad. We underestimate our collective strength. We are consumed with consuming and do not see that we wield more power than we could ever imagine. Several years ago, I facilitated a frightening session at the Canadian AIDS Society HIV Forum. I called it “Fabulous Monsters”. People might think that I’m equating us with Frankenstein but no – a monster is a creature that inspires fear and awe. Fabulous means that we are collectively historic and fabled: we have amazing and potent stories to tell and wisdom to impart. We used to do that with alarming frequency. We used to be political animals but we have become reliant on the voices of the professionals and Executive Directors to speak out on our behalf. And those people are muzzled when it comes to the dreaded “advocacy”, lest their funding be pulled. As HIV+ people we are weak and we are mute for the most part. 

Of course there are those of us that continue to have the passion in our blood to open our big fat mouths and rock boats; and increasingly we’re getting tired of having to do that. When we rail against a system that doesn’t listen because they “know better”, soon we may just throw up our hands and give up. We don’t Act Up much anymore and in the worst cases we are simply toadies to the elite that make decisions for us. 

Events like the Positive Gathering are perfect venues for political action and collective decision making. They could be used to develop strategies to engage our own voiceless community in action and to tell the Health Authorities and governments what we want to see change – we could be the change we want to see and we could move mountains with our strength. We’re smart enough to temper our desires with reality. 

Will that day ever happen? I somehow doubt it. We’re more comfortable posting our rants on Facebook than we at rattling cages. We have our own comfortable pen now and we may never achieve equality because we have lost the momentum we had in the distant past. All people are equal, but some people are more equal than others. And we aren’t those people. 

And the ghosts of the first ones shake their heads and sigh

This article by Sean Hosein first appeared on the CATIE website here  

Une version française est disponible ici. 

In high-income countries such as Canada, Australia and the U.S. and in regions such as Western Europe, huge advances have been made in the treatment of HIV disease. Researchers increasingly expect that a young person who is diagnosed today and who initiates potent combination anti-HIV therapy (commonly called ART or HAART) and who has minimal co-existing health conditions should have several additional decades of life expectancy.

The combinations of therapies available for the initial treatment of HIV are plentiful. Furthermore, pill taking has been simplified by the availability of the co-formulation of several drugs into one pill, creating an entire regimen in a single tablet. Such single-tablet regimens need only be taken once daily. However, things were not always this way.

A look at the past

Initial treatment for HIV infection, when it became available in the late 1980s, consisted of a single drug—the nuke (nucleoside reverse transcriptase inhibitor) AZT (zidovudine, Retrovir)—given at high doses and taken every four hours. Such a regimen frequently caused headache, nausea, vomiting and damaged the bone marrow.

In the early 1990s, other anti-HIV drugs in the same class became available, including the following nukes:

• ddC (zalcitabine, Hivid)
• ddI (didanosine, Videx)
• d4T (stavudine, Zerit) 

These three drugs, commonly called d-drugs, initially appeared to be better tolerated but soon showed their own side effects, such as peripheral neuropathy (painful nerves in the hands, feet and legs). ddC is no longer manufactured and treatment guidelines in high-income countries now discourage the use of d4T and ddI.

In 1996, a new class of anti-HIV drugs became available—protease inhibitors (PIs). When used in combination with nukes, the results were dramatic. For the first time in the history of the AIDS pandemic, people showed sustained recovery from AIDS-related infections.

However, shortly after HAART became available, reports emerged of a strange syndrome of changes in body shape sometimes associated with the loss of the fatty layer just under the skin. This loss of fat, called lipoatrophy, affected all parts of the body but its effect on the face could become most distressing.

Initially, because PIs were the latest class of anti-HIV therapy, they were suspected as the culprits. However, a few years later, researchers began to realize that exposure to d4T and, to a lesser extent, AZT, was linked to lipoatrophy. Today, drugs such as d4T and AZT are generally not recommended as first-line therapy in high-income countries.

Nukes today

In the current era, nukes remain the backbone of many regimens. Nukes commonly used today include the following combinations:

• abacavir + 3TC – sold as a fixed-dose formulation called Kivexa (or Epzicom) and also found in Trizivir
• tenofovir + FTC – sold as a fixed-dose formulation called Truvada and also found in other combinations such as Atripla, Complera and Stribild 

A lingering sense of caution

Decisions about starting therapy for HIV infection have always been challenging; both doctors and their patients have weighed the risks and benefits, as well as a person’s ability to take HIV medicines exactly as directed for many years. In the current era, with safer, simpler therapies and more results from clinical trials, the risk–benefit ratio has swung strongly in favour of very early initiation of therapy. The most recent version of the U.S. Department of Health and Human Services’ (DHHS) HIV/AIDS Treatment Guidelines recommends early therapy for all HIV-positive people, for two reasons, as follows:

• At the level of the individual, early treatment can help preserve the immune system and improve health.
• From a public health point of view, treating more HIV-positive people reduces the amount of HIV in their blood, other tissues, and genital fluids. The result is decreased sexual infectiousness. As a result of this reduced infectiousness, at the level of a large urban area or region, widespread use of ART can help to reduce new cases of HIV transmission. This approach of treating people to reduce their infectiousness is called TasP—treatment as prevention. 

Despite the general tolerability and safety of Kivexa and Truvada, some HIV-positive people and their doctors remain somewhat wary of nukes in general, given their checkered history, and wonder about the potential of these drugs for causing new, unknown side effects. This latter concern is increased as HIV-positive people age and need to take multiple medications, heightening the potential for drug interactions and side effects.

Emerging research suggests the possibility that nukes can affect the energy-producing parts of cells (mitochondria). However, nuke combinations commonly used in the initiation of therapy today have not been proven to cause mitochondrial damage that is directly linked to the ill health of ART users.

Aging and HIV

Some researchers have found hints of apparently accelerated aging in some HIV-positive people. Specifically, some organ-systems, such as the brain, heart, blood vessels and bones, appear to have aged more quickly than they should.

The cause of this apparent aging is not clear.

If premature or accelerated aging does exist in HIV infection, there may be several potential causes affecting different people, including the following:

• long-term exposure to specific proteins produced by HIV-infected cells
• higher-than-normal levels of inflammation, which accompanies chronic viral infections such as HIV
• substance use
• tobacco smoking
• co-infection with other germs, such as members of the herpes virus family—CMV (cytomegalovirus) and EBV (Epstein-Barr virus) 

The immune system and aging

Several research teams have found that, if left untreated, HIV infection does prematurely age the immune system. HIV appears to cause this by repeatedly activating the immune system and producing inflammation. This virus also appears to cause complex and poorly understood changes to the immune system shortly after it enters the body.

ART greatly reduces HIV-related inflammation but cannot entirely eliminate it. Prolonged exposure to higher-than-normal levels of inflammation is associated with many chronic illnesses and it is possible that such inflammation over the long-term may play a role in reports of accelerated aging seen in some HIV-positive people in studies. However, it is important to bear in mind that exposure to unhealthy behaviours—particularly tobacco smoking—also causes inflammation. Separating all the possible drivers of accelerated aging in HIV-positive people will not be easy and will require many studies, some of them quite expensive and daunting in their complexity.

Much caution needed

A research team in Australia has been exploring the theory that nukes somehow contribute to the apparent acceleration in aging in HIV-positive people. Their work, conducted in complex laboratory experiments on cells from HIV-negative and HIV-positive people suggests the possibility that the drug tenofovir (Viread) may accelerate the aging of the immune system. However, we urge our readers to treat this finding with a great deal of caution, if only because the results from the Australian experiments are not definitive. Furthermore, due to built-in limitations of their study’s design (it is cross-sectional in nature), questions remain about the significance of their findings. Next up, we will explore some of the issues related to the Australian study.

—Sean R. Hosein

REFERENCES:

 1. Boasso A, Royle CM, Doumazos S, et al. Overactivation of plasmacytoid dendritic cells inhibits antiviral T-cell responses: a model for HIV immunopathogenesis. Blood. 2011 Nov 10;118(19):5152-62.

 2. Herbeuval JP, Nilsson J, Boasso A, et al. HAART reduces death ligand but not death receptors in lymphoid tissue of HIV-infected patients and simian immunodeficiency virus-infected macaques. AIDS. 2009 Jan 2;23(1):35-40.

 3. Bestilny LJ, Gill MJ, Mody CH, et al. Accelerated replicative senescence of the peripheral immune system induced by HIV infection. AIDS. 2000 May 5;14(7):771-80.

 4. Leeansyah E, Cameron PU, Solomon A, et al. Inhibition of telomerase activity by HIV Nucleos(t)ide Reverse Transcriptase Inhibitors: a potential factor contributing to HIV-associated accelerated ageing. Journal of Infectious Diseases. 2013; in press.

 5. Payne BA, Wilson IJ, Hateley CA, et al. Mitochondrial aging is accelerated by anti-retroviral therapy through the clonal expansion of mtDNA mutations. Nature Genetics. 2011 Jun 26;43(8):806-10.

 6. Helleberg M, Afzal S, Kronborg G, et al. Mortality Attributable to Smoking Among HIV-1-Infected Individuals: A Nationwide, Population-Based Cohort Study. Clinical Infectious Diseases. 2013; in press.

 7. Rasmussen LD, Kessel L, Molander LD, et al. Risk of cataract surgery in HIV-infected individuals: a Danish nationwide population-based cohort study. Clinical Infectious Diseases. 2011 Dec;53(11):1156-63.

 8. Guaraldi G, Orlando G, Zona S, et al. Premature age-related comorbidities among HIV-infected persons compared with the general population. Clinical Infectious Diseases. 2011 Dec;53(11):1120-6.

 9. Pathai S, Lawn SD, Weiss HA, et al. Increased ocular lens density in HIV-infected individuals with low nadir CD4 counts in South Africa: evidence of accelerated aging. Journal of Acquired Immune Deficiency Syndromes. 2013; in press.

 10. Smith RL, de Boer R, Brul S, et al. Premature and accelerated aging: HIV or HAART? Frontiers in Genetics. 2012;3:328.

 11. Carr A, Samaras K, Burton S, et al. A syndrome of peripheral lipodystrophy, hyperlipidaemia and insulin resistance in patients receiving HIV protease inhibitors. AIDS. 1998 May 7;12(7):F51-8.

 12. van der Valk M, Gisolf EH, et al. Increased risk of lipodystrophy when nucleoside analogue reverse transcriptase inhibitors are included with protease inhibitors in the treatment of HIV-1 infection. AIDS. 2001 May 4;15(7):847-55.

 13. Cohen S, Janicki-Deverts D, Turner RB, et al. Association between telomere length and experimentally induced upper respiratory viral infection in healthy adults. JAMA. 2013 Feb 20;309(7):699-705.

This article by Shazia Islam first appeared in The Humber News here. 

Fear of stigma is the primary reason why people living with HIV do not disclose their status, a frontline worker said in an interview with Humber News on Monday.

Henry Luyombya, (below right), HIV researcher and member of the Committee for Accessible AIDS Treatment (CAAT), told Humber News that people need to be better educated about HIV in order to challenge the stereotypes.

“People are misinformed about the facts on HIV transmission and how to treat HIV,” Luyombya said.

CAAT is a non-profit community agency that provides education and training, and improves service access for newcomers, immigrants, and non-status people living with HIV/AIDS.

Luyombya said usually the most marginalized communities, including racialized people, face the brunt of stigma – which is akin to rejection and can lead to discrimination.

“You don’t know if you’re going to be fired from your job, or you might lose your scholarship, or might be kicked out of school,” he said. “Or even lose your social networks that you depend on.”

Stigma against people living with HIV/AIDS, also known as PHAs, is based on moralistic assumptions about people’s sexual and lifestyle choices, he said.

Luyombya stressed the importance of changing the public perception that HIV is a disease that only certain minority populations contract.

“We are all affected by HIV,” he said.

Luyombya agrees with the need for a set of guidelines to help people living with HIV/AIDS disclose their status.

The Ontario HIV Treatment Network (OHTN) published a report in March 2013 outlining key strategies for HIV disclosure.

The report said it was important to “carefully decide who to disclose to” and to self-educate about HIV/AIDS by attending community workshops or training programs, such as those offered by CAAT.

“When individuals living with HIV are given skills to advocate for themselves, then they work together as a community to bring things forward,” said Luyombya. “This leads to improved health and improved skills-building.”

Luyombya added that training and sharing of accurate information about HIV create a sense of empowerment in the PHA community, which can have a significant impact on reducing stigma elsewhere.

“We address stigma through building community coalitions with PHAs, and media, social justice networks, and faith leaders,” he said.

But Luyombya echoed the report’s recommendations and said choosing the right people to disclose to and when to do so were important considerations.

He said it was better to reveal to “particular groups that may be trained with the necessary information to support someone in the disclosure process.”

Although HIV disclosure is encouraged from a public health perspective because it supports prevention work, PHAs could face future repercussions.

“You don’t know five or 10 years from now, when you’re applying for a job, or when you’re running for office, if it will be used against you,” said Luyombya.

Only through “mobilizing community leaders” and “addressing HIV-phobia” can stigma be effectively challenged, he said.

According to the Public Health Agency of Canada, in 2011, there were an estimated 71,300 people living with HIV/AIDS in Canada.

Shazia Islam, Humber News Online Reporter