'I never asked to be an activist.'

AIDS and HIV

By Harry Rey

Don’t die of ignorance.” The adverts said. At school, the word “gay” didn’t exist. Queer, fag, poof, even “Harry Hoofter,” were all banded about in the corridors and classrooms, but Section 28 still meant teachers put their fingers in their ears when it came to dealing with homophobic bullying. In my time at high school, cut short because I couldn’t stand the abuse anymore, the only time my identity was ever acknowledged was by my art teacher, Mrs Heampstead. She gave me one piece of advice: “Don’t get AIDS. It’s horrible. It’s the worst way to die.”

I remember it from TV, too. When Mark Fowler in EastEnders left the show to go off and die like a dog when his HIV treatment “stopped working.” It would take years before I learned that’s not a thing.

On TV, in films, even in books, HIV was treated as a dark and deadly plot twist which weaves its way into characters’ lives like a modern-day morality play. “See? This is what happens when you don’t play by the rules.”

Life Expectancy

“If you ever have sex again, you can go to prison.”

That’s the first thing the nurse told me as a newly diagnosed 22-year-old. Some people don’t remember their diagnosis date. I’m not so lucky: it was my birthday. The call had come the night before, minutes before I was due to head out the door celebrate my new-found freedoms. University was over and my future was wide open.

“It’s serious,” the nurse continued at the wonderfully named Centre for Infectious Diseases. “You’re a risk to any of your future partners.”

Well she didn’t need to worry about that. My partner wasn’t returning my calls. The doctor was dead against starting treatment. “Nasty stuff, those pills,” he bumbled through a stiff collar and a leather-patched tweed coat. “The life expectancy of people taking these pills is actually shorter than those who don’t.” And who can argue with the professor?

As weeks of torment dragged into months of misery, I didn’t much care about the ghostings, the unanswered messages or, even worse, the pity dates. I just wanted someone to talk to. I used to spend whole nights trawling the chat rooms buried away in the darkest corners of the early 2000’s internet searching for someone like me, just to talk to them. I didn’t care about how they got it or if they’d found love. I just wanted to know, “how long do you have left?”

Life Changing

“What do you know about being undetectable?” A nice lady with the clip board asked me one day.

“I don’t know what that is.”

“You’ve never heard of it?”

I shook my head. She scratched down a few notes on her page.

“How long have you been HIV positive for?”

“Nearly three years now.”

“And how many partners have you had in that time?”

I shook my head again.

“None?”

“None. I… I didn’t think I was allowed. They said I’m, you know, a risk.”

“All right.” She put down her clipboard, leaned across the coffee table and took hold of my hands. “You are not a risk. You are a person. And you’re allowed to love. Being undetectable is when an HIV positive person is on effective antiretroviral treatment, the pills that stop HIV replicating in the body, and the virus can’t be detected in their body. We know that makes them uninfectious, and there are studies going on right now that can prove that.”

Back at the surgery, the doctor laughed when I asked. “Why would someone put themselves at risk by having sex with you? If you infect your partner you can go to prison.”

It was then I realised the doctor’s job was to keep me alive, not to allow me to live.

“I want to start treatment.”

“It’s still too early. Your CD4 count is still above 500 copies. NHS guidelines only recommend treatment when your count falls below 350.”

“I’m not leaving this office without a bottle of Eviplera. It’s one pill a day, I think I can handle that.”

Just twenty-one pills later, I was undetectable. That’s all it took. The virus in my body was untransmittable. Treatment prevents transmission. Suddenly I no longer felt like a walking bag of used needles. I wasn’t toxic anymore.

While on effective treatment, HIV has no discernible impact on your overall life expectancy. Being undetectable means there is zero risk of transmission to a sexual partner. Not almost zero. 0%. It’s an absolute zero. Undetectable = Untransmittable. You can’t pass it on.

I fell in between a generation gap. My doctors were raised on diets of treatment cocktails; pill burdens which used to harm as many patients as they helped. The doctors were so focussed on the absolute meaning of life expectancy, they forgot to say what to fill them with. The profit margins of HIV, like any disease, don’t leave much room for anything other than cold, hard data. The doctors make decisions based on the information the drug companies give them; they weigh up side effects and cost efficiency. The place a value on the years of your life, both in terms of cost and quality. How many good years do you have left, and what’s that going to cost the taxpayer? No wonder that back then, they didn’t want to put a 22-year-old on treatment.

The Cost of Life

The world of HIV/Aids is very different today from when I was first diagnosed ten years ago. But some things about it haven’t changed. Our chronic condition still sustains the livelihoods of tens of thousands of people, millions of shareholders, and billions in profits for drug companies.

Nothing illustrates the glaring health inequalities caused by the capitalisation of the Aids industry more than the case of Martin Shkreli, the “pharma bro,” currently serving a seven-year prison sentence for securities fraud. In 2015, Martin Shkreli caused global outrage when his pharmaceuticals company Turing “bought” the rights to a lifesaving drug called Daraprim. The next time the NHS says they “can’t afford” to provide a medicine, it’s because the drug company has their shareholders to think about.

Daraprim (Pyrimethamine) has been available since 1953 although its patent long since expired. It used to cost $1 per pill, but in 2010 GlaxoSmithKline sold the marketing rights to CorePharma, which allowed Shkreli’s company to swoop in, buy the rights and hike the price 5,000% to $750 per pill.

The world was rightly outraged, and headlines from the time said how despicable it was Shkreli had hiked the price of this vital “HIV” drug. But there’s only a market for Daraprim because people are still developing AIDS, which in today’s world doesn’t need to happen. Treatment enables people living with HIV to stay virally suppressed and healthy for the rest of their lives, but in countries without adequate healthcare such as the US and parts of sub-Saharan Africa, treatment is not easily available. While in the UK, over 85% of all people living with HIV (whether they know it or not) are virally suppressed, in the US this figure is barely a third.

In the UK and countries with effective testing and treatment, most people with HIV have a lower overall death rate than people without HIV. And that’s not just because treatment for HIV and AIDS-related illnesses is delivered free through the NHS. It’s because other conditions which HIV positive people face, in particular Hepatitis C, are quickly dealt with. Unfortunately, this comes at great financial cost.

What Martin Shkreli did, although legal, was grossly unethical. But he’s not the only one. He just got smacked about in the press for it. The greatest price gouging scandal of our time comes one of the world’s biggest pharmaceutical companies – Gilead – and their Hepatitis C drug Sofosbuvir. It’s a complete cure for the liver disease, and practically side effect free, unlike previous Hepatitis treatments. Gilead charges $1,000 per pill. A course of treatment can be up to 28 weeks, costing nearly $200,000 which makes it the most expensive drug ever sold. Gilead justifies it by saying they need to recoup their research and development costs, but that is stretching the truth.

A smaller company called Pharmasset had already developed this Hepatitis C cure and was testing it in various clinical trials. In 2011, Gilead swooped in and bought the company for $11bn. In just one year, Gilead made $14bn on sales of Sofosbuvir in the US alone. So yes, Gilead did recoup their costs, but like many pharmaceutical companies, their costs are not for labs and scientists, but stocks and shareholders, and the costs are passed on to thinly stretched national health services.

Owning life-saving treatments for deadly conditions is highly profitable. Why else is there a global race to be the first to find a COVID-19 cure? The story of HIV is a microcosm of the business of disease. First comes the plague, then comes the treatment, then comes the profits. The person – the individual with the condition, their hopes, their dreams, their fears, never enters into the equation. 

Love Expectancy

I never asked to be an activist. I never asked to know about virus replication, RNA, and more drug names than a pop star’s medicine cabinet. Just as I never asked to be infected with HIV. But here I am, still. Life will teach us what it wants.

But through it all, the most important lessons I’ve learned are not about public health or drug company research costs. They’re about love. Love for your own life, for your own future, for your own love story, no matter what life throws at you.

Four years ago, I married my husband, who is HIV negative. The week after our wedding, I sat down to write. Not just my story, but the stories of other people like me. I haven’t stopped since. Fifteen books (and counting) later, I’ve learned the stories we tell ourselves are how we understand our future. The story of AIDS used to be told in words of victimhood, of shame, of fear, of vastly shortened life expectancies. But that’s not how HIV positive people live, or love. We have our own stories, and it’s about time we tell them.

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