Today, most people, if they think about HIV at all, fear catching it. But even those people are few and far between: a 2012 Washington Post / Kaiser Family Foundation survey showed that 75% of respondents said they weren’t very concerned about contracting HIV / Aids, and 60% weren’t even worried about a family member doing so.
But the truth is that every single one of us is living with HIV: there are more than 1.1m Americans who have it, and an estimated 180,000 of those people don’t know it. Even if you don’t know someone who has HIV – though, because of available treatments, you might never know who in your life does – we all pay taxes to help treat it, research it and combat its spread.
I live with HIV in the most banal way possible, because I have it: I was diagnosed almost 10 years ago.
As a Gen Xer I was a generation apart from those directly affected by Aids epidemic of the 1980s. I grew up with sex-ed, after-school specials and PSAs all reminding me to use a condom and practice safe sex. But for me – and many other people – knowing the right thing to do, and doing that right thing 100% of the time, is harder than it seems. I never asked for HIV and I don’t deserve HIV, but I did engage in risky behaviors thinking that it would never happen to me. In my case, I was wrong.
It was St Patrick’s Day 2005 when the life for which I had dreamed and planned – falling in love, marriage, children, vacations, retirement – fell away. While I sat in a beige room waiting to receiving my diagnosis, somewhere across town my friends were celebrating over shitty green beer. I remember immediately thinking, “I am a leper”: as someone living with HIV, I felt I was doomed to roam the Earth without experiencing its joys.
Learning that I was HIV positive was the worst thing that ever happened to me. But, as I have come to find out, HIV wasn’t the end of my life – and it hasn’t come to define me, either.
Sure, there are the questions that I get about living with HIV: what it’s like to take medications every day (like taking a daily multi-vitamin – or any drug for conditions like high blood pressure or diabetes); what it’s like to date with HIV (it sucks, but then so does all dating); and how to tell people with whom you want to have sex that you’re positive (it’s hard but necessary – some people will immediately reject you, but most just have questions).
But there’s also the living part, which is where I like to focus most of my attention when talking to people about my experience. I get to tell them that a rich, normal, often boring (but sometimes exciting) relationship-filled life awaits us all … positive and negative alike. At least here in the US and in many Western countries, there is no reason anyone with HIV ever needs to develop Aids. It’s simply a fact of the times – a fact of life – and it is an important message for everyone to hear.
Learning how to live with HIV – whether or not you personally have it – is important, because even though that Kaiser survey suggests that half of Americans think a cure is coming in their lifetime (and about the same amount believe that we’ll have an “Aids-free generation” by 2050), it’s probably a lot further away than that.
We need to start spending our limited time and energy on solutions that help everyone living with HIV, and not just those of us who have contracted it: support initiatives that help destigmatize HIV, support efforts to move HIV treatment out of specialists’ offices and into private and general practices and embrace harm-reduction efforts (like syringe exchanges and decriminalization of sex workers), to offer those most at risk for catching and transmitting HIV access to capable and qualified help.
We know that, when people believe that contracting HIV means their lives are over, they fear and avoid getting tested. The Kaiser survey alone suggests that: 59% of people have never talked about HIV / Aids with a health care provider, and 53% have never talked about it with a spouse or partner. But by talking about living with HIV – and not just dying from Aids – we can help reduce stigma around testing that keeps many people and their partners in the dark.
We need to talk about the benefits of today’s medications: they’re easy, they rarely have side effects, and it makes it very, very hard to transmit HIV to sexual partners (one recent large study found a nearly zero transmission rate among serodiscordant partners). Yet, 44% of those surveyed by Kaiser in 2012 don’t even know that we have drugs that can help reduce transmission!
And that, of course, brings us to Truvada, and what is certain to be other Pre-Exposure Prophylaxis (Prep) drugs like it. Users who take Truvada regularly –shunning the ridiculous and hazardous concept of “Truvada Whores” and supposed moral implications of taking the drug – reduce their risk of infection by between 92% and 99% (before you take into account the effects of serodiscordant partners taking their own medications effectively).
We can’t wait for a cure or a vaccine, not while HIV transmission rates are rising in young gay men. We used to be able to rely on fears of HIV and the Aids epidemic’s devastation to encourage (or even coerce) people to use condoms and get tested – but that doesn’t work as well as it used to. Destimatizing HIV as just another chronic disease can encourage people to get tested, share their results, discuss Prep with their partners, and stay on their meds.
We’re not going to realize an HIV-free generation by closing our eyes to the fact that some people can’t (or won’t) use condoms every single time. We will never achieve zero-incidence by just hoping that a cure eventually pans out. We need to deal with the reality that, today, every single one of us is living with HIV. Yes, you too.
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The Guardian is exploring the experiences of HIV in America. Watch our video, below, of a man who has been living with HIV for 30 years.