There is a narrative that exists both outside and within the LGBTQ+ community about the complacency surrounding HIV transmission, especially in regard to gay and bisexual men who engage in “high risk” behaviors. The narrative paints these men as careless with their health and cavalier about the contraction and spread of HIV. The employment of that narrative both within and outside of our community is clearest when discussing the use of Pre-Exposure Prophylaxis drugs (PrePs). Though some of the context surrounding HIV has changed, it is no longer the death sentence it was in the 1980s and 1990s, it is still a health crisis. The question our community faces is a difficult one: Do we adopt a strategy of oppression that relies on the same fear and shame used by those who would hate and shun us or do we abandon what is clearly not working and try to find a new narrative of inclusion?
The drug, approved by the US FDA, is Truvada. It is a PreP drug that prevents infection in HIV- individuals who are at high risk. The definition of high risk includes HIV- gay and bisexual+ men, those who have contracted an STI in the past six months prior to examination, those who have sex without a condom with men or women unaware of their HIV status, and those who have sex with IV drug users[i]. Essentially, if you are a gay or bisexual+ man or have sex with a man (gay, bisexual+, or hetero) without a condom and an unknown HIV status, you are at risk.
Essentially, if you are a gay or bisexual+ man or have sex with a man (gay, bisexual+, or hetero) without a condom and an unknown HIV status, you are at risk.
The good news is that the drug has high efficacy rate (92 to 95 percent) and low side-effects[ii]. The bad news is that it is a regimen that relies on medication compliance, it’s one pill a day ongoing course, and regular 3-month checkups for bloodwork. Let me tell you, as a Social Worker who has experience in a medical setting, getting folks to comply with medication regimens is a Sisyphean effort at the best of times, but the fight is worth it because even though the impact of HIV infection has changed, it is still a life-long and life-limiting chronic illness. The life expectancy of an HIV+ person still carries an 8 to 13-year difference from those who are HIV-, but that being said, a 20 year old diagnosed with HIV in the US today who receives regular, consistent treatment could expect to live to 71 years of age, compared to 39 in 1996[iii].
According to the US Centers for Disease Control and Prevention (CDC) there are approximately 1.2 million people with HIV living in the US and 1 of every 8 infected people don’t know they carry the virus[iv]. The UK reports approximately 4,000 new cases of HIV a year[v]. The rate of new diagnoses in the US has fallen 19% from 2005 to 2014 (latest data available), even so 2014 saw 44,073 new cases of HIV infection in the United States[vi].
If Truvada is so effective, why aren’t there broad education campaigns in every community health clinic, physician’s office, college campus, and hospital in the country?
So, if this drug is so effective, why aren’t there broad education campaigns in every community health clinic, physician’s office, college campus, and hospital in the country? It’s a complicated issue with a myriad of moving parts including rates of HIV infection related to socioeconomic status, gender, race, and the expression of sexual attraction, wrapped in a hard candy coating of sexual “norms” that are founded in religious doctrine. Despite how far we’ve come, there is still a narrative of shame that surrounds the expression of sexual attraction outside of the white, Judeo-Christian, middle class, two-person, cis-male/cis-female, monogamous norm.
This narrative, propagated most vocally by the politicized Christian right in the US, is that if a person engages in an expression of sexuality outside the Judeo-Christian married dyad, that person is immoral. It follows, in the narrative, that PrePs protect and encourage immoral behavior by creating the illusion of safety for those at risk, and allow them to engage in higher risk behaviors more frequently. It’s similar to the arguments that kept safe, easily accessed birth control out of the hands of women in the U.S. until 1972 and caused an outcry surrounding the HPV vaccine that prevents HPV infection and most cervical cancers in women. Quite simply put: give folks an opportunity to sin safely, they’ll build a golden calf and try to have sex with it.
Shame and fear are tried and true methods of social control and have been wielded to deny groups and individuals their basic human rights for millennia. Targeting sexual expression is a powerful tool in the shame and fear arsenal, especially when employed by those who are assured of the inerrancy of their religious dogma. The fear and stigma created can be as blindingly destructive as the tragedy that took place in the Pulse Nightclub in Orlando or as insidious as the shame propagated in Judeo-Christian pulpits every Sunday. The message is the same in both cases, safety doesn’t exist outside the paradigm of the dogma’s morality, anything that strays will suffer.
Shame and fear are tried and true methods of social control and have been wielded to deny groups and individuals their basic human rights for millennia.
HIV has been used throughout the world as a way to spread misinformation, fear, and shame aimed at the LGBTQ+ community. Christian leaders like Jerry Falwell and Pat Robertson have used HIV like a dirty bomb against the LGBTQ+ community, especially gay men, going as far as to assert that natural disasters and terrorist attacks were god’s punishment for our sins. During the 1980s our community was painted as the lepers of a new age. If you listened to the “righteous” HIV and AIDS were divine payback for the shame we had brought on our ourselves, our families, and the world. Fast forward 40 years and the rhetoric continues, including portrayals of those at high risk as cavalier with their health and uncaring of the social and fiscal cost of a chronic illness. The vulnerable become a burden on society, where the average tax payer is forced to foot the bill for their immorality. A UK television “news” program, The Wright Stuff featured the following tagline surrounding the debate regarding a recent High Court decision about the provision of PrePs to high risk citizens, asking the question: “FREE £20M HIV DRUG FOR GAYS WHO WON’T USE CONDOMS?”[vii]
The narrative of shame isn’t just outside the LGBTQ+ community. There is still a strong debate within our community regarding the use of PrePs. An article in Atlanta Magazine discussed the split in the LGBTQ+ community regarding use of the drug in Fulton County, which accounts for almost half of the newly diagnosed HIV infections in the Atlanta metro area[viii].
The concern expressed by people who question the use of PrePs within the LGBTQ+ community is the fear of complacency regarding the impact of HIV. It is a reasonable concern for those of us who remember when HIV was a death sentence and everyone knew someone who had died or was dying. The Centers for Disease Control and Prevention indicated that 1 in 5 of every new HIV diagnosis were youth 18 to 24 in 2014[ix]. HIV infection means something very different in 2016 than it did in 1980 or even 1990 before most of these youth were alive. Now combine the magical thinking of the invulnerability of youth, a lack of context regarding of the early years of the AIDS crisis, and the manageability of infection. It’s a cocktail for complacency which puts more people at risk. Challenges with medication compliance and the threat of drug resistant strains of HIV are very real, but that doesn’t mean we should shame and stigmatize from within the community. If we do, we run the risk of silencing the most vulnerable with shame and stigma when there are other options that include outreach and education.
Shame and fear have amassed quite a body count over the years. We have a choice to not compound the stigma surrounding HIV infection by adding to the hateful narratives about a treatment that has the potential to save a generation of LGBTQ+ youth. It’s our choice and it starts with open, frank discussions without shame, because shame equals silence and as ACT UP stated in those early years of the AIDs crisis “Silence=Death.”[x]
About the Author: Jenn Kowalski is a Licensed Social Worker with a Masters in Social Work from The Ohio State University. She writes about living with chronic illness, politics, health, and social issues in her blog 2 for Take Away. She is a white cis-woman who identifies as pansexual. For more about her please click here and for more about Jenn’s experience with Lupus & Fibromyalgia click here
[iii] David Heitz, “Life Expectancy for People with HIV Continues to Improve,” Healthline.com – Healthline News, August 8, 2016.
[viii] Richard L. Eldridge, “HIV Prevention Pill Stirs Debate in Atlanta’s Gay Community,” Atlantamagazine.com, June 2016.