What it’s really like being young and HIV+ in 2019

This week in Ireland, news emerged which confirmed to the wider public what activists have known for several years: new cases of HIV are rising. ACT UP Dublin campaigners have been warning of the spiralling epidemic for some time, staging protests outside the Irish health minister’s office last year to highlight what is, most definitely, a crisis of a generation.

Along with poor sex ed, the availability of PrEP (a drug which prevents the transmission of HIV) is one of the root causes of the emergency: it’s pricing many Irish gay men out. Similar struggles around access are faced by the UK and the US. In Britain, the NHS has rolled out a trial programme for PrEP with a limited number of places – but campaigners argue that of course the spaces should not be limited. In the US, the cost of PrEP can run to $20,000 a year.

The political, legal, and economic struggle around HIV prevention has dominated the LGBTQ (and straight) media in recent years, to the extent that the lived experiences of HIV+ people sometimes get lost in the noise. All too often, new diagnoses become mere statistics. The sense of urgency around prevention can even compound the stigma against those who are already HIV+.

For those reasons, Dazed is speaking to HIV+ gay men in the US, UK, and Ireland to round off LGBT History Month, to get an insight into what life is like when you’re young and you’ve already gotten your diagnosis.

Eric is 23, lives in Indiana, and found out he was HIV+ last October. “I was actually diagnosed the same day I had an intake appointment to see a therapist for the first time so you can imagine how it felt like the worst day of my life”, he tells Dazed.

“The weeks following it was such a struggle to feel good not only about myself, but about how things will be for me as I got older seeing as how I didn't think I'd even get much older”.

Eric’s initial pessimism was the result of historic stigma attached to HIV. In the 1980s, when HIV first began to appear in the gay male populations of New York and Los Angeles, terror spread rapidly. It took a couple of years of stumbling in the dark for medical professionals before they understood what the “gay cancer”, or “gay related immune deficiency” even was. Ryan White, a teenager in Indiana who acquired the disease from “contaminated blood products”, was banned from his school. Doctors and nurses drew straws to determine who would have to enter the AIDS wards, such was the unfounded paranoia around transmission by casual contact (either airborne or skin-to-skin).

The tabloid media filled the vacuum of information with homophobic propaganda. Rags like the Daily Mail inflamed panic and misled readers into thinking the disease was more infectious than it actually was. This period of uncertainty and alarm impacted on the public consciousness so profoundly that even decades later its legacy of deep-rooted HIV stigma can still be felt. Tabloids like the Sun are still relying on HIV stigma for their inflammatory clickbait – this gross and misleading headline appeared just this week. That’s why it’s still so incredibly hard for some young men, like Eric, to receive their diagnosis.

“The thought of HIV is in my mind every single day, but it doesn’t make me fatalistic about my future”

Al is 26 from Dublin, Ireland and also struggled massively when he was diagnosed a few years ago. “The only shit thing about having HIV is the shock, depression, and anxiety that follows the diagnosis. I felt total panic, thought I couldn’t ever have sex again, that nobody would ever be in a relationship with me. I was severely depressed. I felt lost, lost, lost, for about a year. Doctors were telling me everything would be fine but nothing went into my head,” he recalls. “It all stems from stigma and misunderstanding around HIV”.

The lingering cultural and psychological aversion to HIV belies the incredibly optimistic medical realities. Antiretroviral medication is now so sophisticated that most HIV+ people take one pill a day, which suppresses the virus in the body. This means that HIV+ people on medication have a normal lifespan, live healthily, and can have unprotected sex with their partners without ever transmitting the virus (this is where the slogan U=U, undetectable = untransmittable, comes from).

“I've had HIV for six years now and I haven’t sneezed”, jokes Al. “I'm taking the most advanced medication which kills all the HIV in my blood except the dormant cells. I've been with my boyfriend (he’s negative) for two years and we don’t have to use condoms because I cant pass the virus on. It's impossible. Everything is fine”.

Eric, despite his much more recent diagnosis, is quickly realising that living with HIV is no big deal. “Nowadays, the thought of HIV is in my mind every single day, but it doesn’t make me fatalistic about my future. Besides my one little pill, my life hasn't changed in any way since seroconversion. Many of my closest friends and one of my parents now know. I’ve never really gotten a negative reaction from anyone I’ve told – including guys,” he says.

Given that there’s so much debate around the price of PrEP and preventive medicines for HIV, one might expect that the costs of living with HIV might also be daunting (of course, on the NHS, this isn’t an issue). In fact, these cost burdens usually don’t come into the equation once you test positive. In Ireland, where PrEP is still pricey, treatment for those living with HIV is, by contrast, completely cared for by the state. “The doctor visits are free, the medication is free”, says Al. “You don’t even have to prove identity,” he explains.

“Awareness is still so shockingly low, I say stuff which to me is HIV 101 and people just don’t know anything. Sex ed is still shit, it’s so worrying”

Even in the US, the most notoriously expensive healthcare system in the world, Eric was able to find ample support in Positive Link. “I got teamed up with an amazing organisation,” he says. “I had no insurance before going to them, but through them I was able to get insurance within a week or so that fully covers the costs of medicine and doctor's visits. It’s virtually free so I face no real difficulty in accessing medication. My only gripe would be that my insurance wouldn't pay for a newer medicine that doesn't have to be taken with food, something so trivial I'm even embarrassed mentioning it.”

Despite the US healthcare system being constructed heavily around private insurance, there are many federal supports to fill in the gaps in care when it comes to HIV: “Before I was set up with the state health plan that I have now, I was enrolled in ADAP which is a federal program specifically for people living with HIV. I was told that would have covered all my medication as well,” says Eric.

The main threat to HIV healthcare in the US is the political right. “Insurance companies aren’t allowed to deny or raise your rates for a pre-existing condition since the Affordable Care Act”, explains Eric. That’s why he was able to get insurance even after he was diagnosed. “That’s something many Republican lawmakers have talked about doing away with which has caused a lot of anxiety obviously”. It is important that the rest of the LGBT community, if ever there is a move to rollback healthcare protections for HIV+ people, closes ranks to make sure this does not happen.

But overall, medically and even financially, living with HIV in the US, UK and Ireland is now very comfortable. Matt Stokes is 26, and was diagnosed in 2016. “I live in London which has amazing doctors and research going on, and with the NHS I have amazing treatment which is all free”, he says. “I am super open about it at work. I take my pill at my desk every day”.

The real problems for those with HIV in 2019 are the stigma, ignorance, and misinformation from others.

“I still get silly stuff on Grindr. I have ‘positive, undetectable’ on my profile which I still feel is really rare”, says Matt. “I’ve had people open a conversation with ‘how did you get it’, or message me after we had sex saying ‘oh no I’m really worried.’”

“I volunteer with Terrence Higgins Trust’s Positive Voices project going into schools and workplaces to talk about life with HIV. Awareness is still so shockingly low, I say stuff which to me is HIV 101 and people just don't know anything. Sex ed is still shit, it’s so worrying,” he confesses.

Matt is eager to emphasise how privileged he is, and how we must all work harder to make life easier for those HIV+ people who are less privileged: “I’m well educated, have a good job, etc. There are so many people who are so far away from that. Almost 8,000 people remain undiagnosed in the UK and 43 per cent of people diagnosed with HIV in 2017 were diagnosed late. We need to talk openly about sexual health so that people are comfortable getting tested, and get diagnosed early.”

“There is so much education to do; we need to fight stigma and make sure people know the facts.”