How do we make HIV a big deal without stigmatising it?

My father lived in the Castro in the late 1970s and into the early 1980s, and he was friends with many of the men who were among the first to die in the early days of the HIV/AIDS epidemic. As family friends fell ill for no explainable reason, wasted away despite the best efforts of doctors, he watched the country fail to act when it came to protecting the gay men of the city. I was very young as our family friends started disappearing from the landscape, but I have a vivid memory of a phone call one day at our old house in Elk, my father going out quietly into the orchard and sitting under an apple tree — the same one our friend Michael had sat under a few weeks ago when he visited, before he was too sick to travel. Even then, he’d been more like a sack of bones with a papery cover of bruised skin, face drawn after making the difficult trip down our rough, winding driveway, but for a few days, he sat out in the orchard and lifted his face to the sun.

My father chopped down the tree that day, because he couldn’t bear to look at it anymore. A few months later, the last of the wood crackled away in the woodstove, and not long after that, we left the country.

I grew up, as did many of my generation, under the looming shadow of the AIDS crisis. I remember posters of Ryan White on the wall and reminders that HIV patients needed hugs too. I also remember that when we returned to the United States and I was dispatched to school, the handling of ordinary injuries was very different from how it had been in Greece. When students got paper cuts, for example, our teachers would push us all to the opposite end of the room, put on rubber gloves, terrified, make children wipe down the cut and wrap it in gauze themselves before going to the nurse’s office, spritz bleach on the floor. We were forbidden from going there for the rest of the day, regarding it like a hot zone. I remember children who wouldn’t play with me at school because we had gay friends.

My sexual coming of age occurred in an era when we did know what HIV was, and how it was transmitted. It never occurred to me to not use condoms, to not exercise due caution, to not be regularly tested for HIV and other STIs, to have sex with partners who hadn’t been recently tested. It never occurred to me to refrain from using barrier methods, to be careful about the presence of body fluids, each one potentially carrying a hot zone of its own. Now, HIV is much more controllable, with courses of costly medications — and Pre-Exposure Prophylaxis is available for those at high risk, including people who may have been exposed but could take PrEP to prevent the virus from taking hold, turning the immune system into a hostage.

When I’m at the doctor’s now, though, I have to remind them about wanting to get tested for STIs, including HIV, even after going over my sexual history — whereas 15 years ago, I would have been sacrificing blood by the quart to the vampires in phlebotomy. I’m active in a community of people who do the same, but that’s not true across society. People across generations are starting to view HIV as less of a big deal, something that can be managed if you get it, something that’s not the end of the world. Youth from 13-24 account for over a quarter of new HIV infections annually, and the overall rate of new infections remains steady, rather than dropping, as one might expect from outreach and education. Most of those youth are gay and bisexual men.

The structure of public health outreach on the subject of HIV/AIDS is apparently not reaching some communities, which is an issue of grave concern. We should be seeing a slow and steady decrease in infection rates reflective of a push to eradicate the virus, rather than a state that remains steady — even as the number of people living with HIV goes steadily up (because it’s becoming a more survivable infection). This raises the question of how we bring awareness of HIV back to the forefront without stigmatising it, because if we have a public awareness campaign that pushes people to be more cautious about fluid exchange, to get tested regularly, to avoid risk factors, we also run the risk of setting the clock back on the way people conceptualise HIV and think about people with the infection.

Ryan White became a literal poster child because of everything he symbolised. He was an innocent kid with hemophilia who happened to be infected with a devastating virus, and he made an appealing public figure for an attempt at educating the public — bad things happen to good people. This has the troubling implication of suggesting that gay men and IV drug users, the largest infected populations in the 1980s, were bad people, of course, for engaging in socially deviant and risky behaviour. Today, IV drug users are still heavily stigmatised, although gay men aren’t subject to such extreme social attitudes. Talking about HIV will inevitably remind people of the worst propaganda from the 1980s, perhaps triggering a new round of homophobia.

We need to be able to point out that HIV infection is still happening to people from a huge range of backgrounds, and that people need to protect themselves from it. HIV is value neutral, and so are patients who have it. It’s not a bad thing, it’s not a punishment, it’s just an infectious disease, and one that can have potentially fatal complications. If the United States can’t resolve its hangups around HIV and public health, it could be looking at a resurgence of infection rates, a fatal and horrific problem for patients who deserve better. We need better sex education. We need more assertive care providers. We need ready education about and availability of testing, or we may find ourselves looking back into the 1980s, and I for one have a limited number of apple trees and friends to lose.

Image: HIV-infected H9 T cell, NIAID, Flickr