It’s a weird word to use, but in many ways I’m lucky — lucky because I only had to watch one friend die as his HIV progressed to AIDS.
It was the early 2000s, and I was still a teenager. I wasn’t out yet. I was so angry when Billy died because I didn’t understand. Billy didn’t have to die, but he couldn’t afford the medication he needed to save his life, and he couldn’t get insurance because of discrimination against people with preexisting conditions.
I met Billy doing community theater. By the time I had met him, HIV had taken its toll, but he was one of the most beautiful people I’d ever met. He must’ve been around the age I am now — his early to mid-30’s. He had such a kind heart.
Despite his terminal situation, he loved this world and he loved people. He’d help anybody any time. He was gentle, and sweet, and he really cared about others. He was compassionate, and never careless with people. He had a tranquility about him that I still find hard to comprehend. Billy was an inspiration, and he didn’t have to die.
But he did. We were all heartbroken. We cried. We hugged. We sang “Seasons of Love.”
So why was I lucky? Because a whole generation of our community had to watch this happen to so many more amazing people than I did. Over several decades, they lost countless friends, acquaintances, family members, best friends, lovers. Losing Billy still breaks my heart, so I can’t even imagine the pain they carry, the grief that visits.
As an “older millennial,” I’ve bridged many transitions: landlines to pagers to cell phones; desktops to laptops to tablets and smartphones; Atari to PlayStation 4.
Probably one of the most personally significant has been seeing HIV go from a terminal, uninsurable illness with unaffordable medication to a manageable chronic condition where treatment prevents transmission and pre-exposure prophylaxis (PrEP) prevents acquisition for people without HIV even when exposed.
I’ll try to simplify: PrEP is a strategy where anti-HIV medication is taken by people who are not living with HIV but want to prevent getting HIV. The currently approved method, a once daily pill, prevents them from acquiring HIV even if they are exposed to the virus. There is also post-exposure prophylaxis (PEP), where if somebody thinks or knows they’ve been exposed to HIV, if they start medication within a 72-hour window, they will very likely prevent acquiring HIV.
HIV treatment itself has also become incredibly effective, with those on treatment (and sticking to it) able to lower the amount of the virus in their bodies to undetectable levels. When a person living with HIV’s status is undetectable, transmission of HIV doesn’t occur. This means that Undetectable = Untransmittable (U=U). This was shown by data gathered during an HIV Prevention Trials Network study on treatment as prevention as well as several other studies.
PrEP did not become available to the public until 2012. People with preexisting conditions were not universally protected from discrimination until the Affordable Care Act of 2010 (Obamacare).
So here’s another transition I went through: Being terrified of contracting HIV and not being able to obtain insurance or afford medication, riddled with anxiety after sexual encounters (my 20s), to being confident that I will not contract HIV and being assured that even if I did, I could lead a long, healthy life and not transmit the virus to others because I would have access to appropriate treatment (my 30s).
I have a lot of friends who are living with HIV. They are indeed living long, healthy, happy lives, but every time I hear about an effort to roll back the Affordable Care Act and its protections for people with preexisting conditions, I remember Billy, I think of them, and it makes me furious.
What also makes me furious is knowing that we have the tools, right now, to end HIV, but we aren’t doing everything we can to do so. If we got everybody tested for HIV, everybody living with HIV on treatment, and everybody who wants protection from HIV on PrEP, we could end HIV transmissions. So why the hell don’t we? Stigma, discrimination, racism, transphobia, patriarchy, money, and a lack of political will.
A study by the HIV charity Avert showed a cyclical relationship between stigma and HIV: “People who experience stigma and discrimination are marginalized and made more vulnerable to HIV, while those living with HIV are more vulnerable to experiencing stigma and discrimination.”
It also showed that myths and misinformation increase the stigma and discrimination surrounding HIV and AIDS, and that roughly one in eight people living with HIV is being denied health services because of stigma and discrimination.
That stigma and discrimination takes many forms: against people in poverty, against people of different ethnic backgrounds, against people because of their sexuality or their gender identity, against sex workers, against people who use drugs, and against HIV itself as its prognosis and transmission potential continue to be popularly misunderstood. The upshot is the same in every scenario: it costs lives and prevents us from ending HIV.
Take the case of the 4,100-person city of Austin in neighboring Indiana, which five years ago was home to the worst drug-fueled HIV outbreak ever to hit rural America, with 235 residents acquiring HIV. Five years later, and many rural areas remain at risk for the same thing happening again.
The Centers for Disease Control and Prevention counts 220 U.S. counties including 11 in southern Ohio as vulnerable to similar outbreaks based on statistics tied to injection drug use. A Kaiser Health News analysis reports that fewer than a third of them have working syringe exchanges, a key tool in that particular fight, alongside the availability of addiction treatment. There are also only 11 needle exchange locations in all of Ohio, most run purely on donations, which creates money difficulty in buying clean needles.
A 2019 study from the HIV Prevention Trials Network laid out the dangers of stigma and discrimination even as effective prevention tools, medications and methods are available.
We need to talk about these things. We need to have and share accurate information. We need to end stigma and discrimination. We need to give ourselves and our communities the tools we need to treat and prevent HIV.
We need to have a strong will, compassion and an open, generous heart with our fellow human beings. Billy did.
This column first ran in the Advance’s sister publication, the Ohio Capital Journal.