HIV ‘CURES’ GIVE PATIENTS SOME HOPE AT LAST
After decades of taking pills, activists see finish line, but transplant op pricey, dicey
HIV isn’t “cured” just yet — but for the first time in a decade, patients and activists have concrete proof that a cure is within reach.
Excitement about the end of the devastating epidemic kicked up after a team of researchers led by Dr. Ravindra Gupta of University College London and the University of Cambridge announced that a man referred to as the “London patient” was diagnosed as HIVfree 18 months after he stopped taking antiviral medications. He became only the second known case of remission of the disease.
The first case — Timothy Ray Brown, also known as the “Berlin patient” — had become the world’s first person to reverse his HIV status a little over a decade ago. In both cases, patients had to undergo bone marrow transplants to treat particularly aggressive forms of cancer.
The recent finding was seen as such a watershed moment because it represents a rebirth of hope. Dr. Gupta’s announcement ignited a media frenzy with celebratory headlines, sound clips and tweets with the word “cured.”
After more than three decades of living a healthy and fulfilling life, HIV survivor Mark King is reluctant to use the word “cure.”
Diagnosed with the disease in 1985, he said he used to dream about that one climactic moment when news about the end of AIDS would send everybody “into the streets in jubilation.”
But that’s not how science works, he said, adding: “It’s incremental. It’s bit by bit. So we don’t get that big moment.”
And that’s OK, he said. “I don’t believe we’ll see a cure for HIV in my lifetime, however, I’m living as if I am cured.”
He added: “I have now outlived both my parents which I never thought was possible when I was diagnosed. And I have outlived a couple of doctors of mine.”
Another HIV warrior, Eric Sawyer, 65, who contracted the disease in 1981, said, “Patients have gotten kind of complacent and their sense of urgency in finding a cure has dissipated because there are effective treatments.”
The excitement, while significant, is premature, experts say.
The world hasn’t arrived at complete obliteration territory, Dr. Demetre Daskalakis, the city’s deputy health commissioner, explains. “This is not the cure for HIV,” he says categorically, but what it “proves is that HIV is curable.”
A bone marrow transplant is an aggressive process used on treatment-resistant cancers. It’s extremely risky, taxing on the body and extremely expensive (The American Cancer Society estimates anywhere from $350,000 to $800,000). And because people nowadays can live long and healthy lives on current antiretroviral therapies, there’s a diminished need for it.
“[Patients] take one pill a day, they’re not sick from the pill, they’re doing good. Now look at them and say, ‘Well, let’s do a bone marrow transplant.’ Seems crazy,” Daskalakis said. At 45, he has devoted his life and career to HIV/AIDS patients, and his raspy voice and ripped tattooed body have given him rock star status in the HIV/AIDS community.
“The trick is to make sure that there’s enough research resources to figure out how to take that ‘proof of concept’ idea into something that can be generalizable to the population,” he said.
New York City Council Speaker Corey Johnson celebrated the “amazing” news, but noted that “we still have a long way to go to combat the HIV/AIDS epidemic and continue to find a cure for all those living with HIV.”
In 2004, Johnson was
diagnosed with HIV. He was 22, and the HIV-prevention drug Truvada, or PrEP, was not yet available. Now he’s using his political position to break the patent that Gilead Science has for the drug.
“As an HIV-positive elected official, I feel it is my responsibility to continue the work of the great activists who came before me and literally saved my life. I will continue to advocate for access to PrEP/ PEP for all New Yorkers to help end the epidemic, and for fellow individuals living with HIV to ensure we all get the care we so truly need,” he told the Daily News.
Empowering the HIV/AIDS community has been patient Sawyer’s main objective in life. A founding member of Health GAP, Housing Works and the advocacy group AIDS Coalition to Unleash Power (ACT UP), Sawyer contracted HIV before the virus was even discovered, at a time when he says only “junkies, queers and whores” who occupied “the lowest position on the totem pole of societal work” were getting infected.
He started noticing some of the symptoms when media reports in 1981 surfaced describing a “strange new cancer infecting and killing healthy gay men.” But it wasn’t until 1983 when scientists were able to identify the virus that was linked to the disease, that he realized he’d gotten a death sentence.
The most significant casualty — among the thousands he’s seen over almost four decades as an HIV survivor – happened in 1986, when his boyfriend died. “My doctor told me at the time [that] based on the illnesses that I was getting, and my blood work, that I probably would be dead in two years, and that I should think about writing a will and getting my affairs in order.” ACT UP was formed in 1987 to “put pressure on the government and on drug companies to accelerate research to try to find a cure for AIDS, and also to change the perspective in society that something needed to be done,” he said. News about the London patient can potentially ignite the same kind of effect that ACT UP produced during the Reagan years, he says.
Sawyer takes two pills a day, down from the “18 big white ugly pills” he had to take daily in 1996.
As effective as the current treatments are, however, they are not a cure. “As soon as you stop taking them, HIV comes roaring back.” Sawyer said. And there are side effects for longterm use. He needed to have hip replacement surgeries because of a condition called vascular necrosis, which affected the blood supply to the bones on his hip.
“They literally had to cut my hips out and replace them with parts you can order on the Internet,” he said.
HIV survivor King also didn’t think he was going to live. The Baltimore-based activist, author and the creator of the video blog My Fabulous Disease, which has received four GLAAD media award nominations, tested positive for the virus on the week when the first antibody test became publicly available — 34 years ago.
“I lived life in two-year increments. I knew that on any given day I would see a spot, or I would develop a cough, or the fever would begin and then the countdown would begin,” King said.
He said, “I was there when they started giving out the first drugs and I took them gladly and then, I was there when it was a whole handful of drugs, and I gulped those down with gratitude each and every morning and night.
“And today I take two pills — two HIV medications — in the morning …. as far as I’m concerned, I am a practical cure.”