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Would You Go Off Your HIV Meds for a Cure Study?

That's What This New Online Survey From Australian Researchers Is Asking. But Guess What? Such Studies Are Already Underway.

September 7, 2017

Tim Murphy

Tim Murphy (Credit: Edwin Pabon)

HIV-positive folks, are you ready for some tough questions? Australia's Monash University and National Association of People Living With HIV Australia have collaborated on this survey asking poz folks if we'd be willing to go off our HIV meds for various periods to take part in various research trials toward finding a cure for HIV.

How long would you be willing to go off your meds? A week? A month? Until your viral load becomes detectable? Until it reaches 1,000? 5,000? Would you be worried about having HIV circulating in your body again? Or about transmitting HIV to a sexual partner while off your meds? Would you be less worried if we provided your sexual partner with free pre-exposure prophylaxis (PrEP)?

Those are the kind of challenging questions the survey asks. And they are just questions, says Monash's Jillian Lau, M.B.B.S., who co-designed the survey, which isn't attached to any particular study but aims to answer the question (in her words): "Are there enough people living with HIV willing to pause their treatment (with the possible short and long-term consequences of treatment interruptions still unclear) to be able to actually design these trials with adequate participants?"

The survey questions certainly got me thinking. I've been on HIV meds and completely (proudly!) undetectable for nearly 20 years, and I'm very aware that, for both my long-term health and my own inability to transmit HIV, it's better to be completely undetectable than to have even a small amount of virus circulating.

At the same time, I want to play a role in research that leads to a cure for this disease. And that research depends on being able to see how the virus responds to various interventions in the absence of our current meds, which only suppress -- but don't eradicate -- HIV.

Turns out, a ton of studies are already underway, I quickly learned from Richard Jefferys, the basic science, vaccines and cure director at Treatment Action Group, which maintains a list of the studies.

They all take you off HIV meds for various amounts of time -- often until viral load breaks through or starts to climb, or CD4s start to fall. But only some of them actually put you on a new experimental agent. Others are just trying to get a read on how quickly viral load rebounds off meds, or why it rebounds faster in some than in others. Answers might yield clues for cure therapy.

So, how's that going, anyway? Well, explains Jefferys, the strongest approach so far seems to be figuring out how to rid the body of HIV that "hides out" in certain bodily "reservoirs" -- such as in the brain, gut or lungs -- even when HIV meds keep it from circulating in the blood.


That theory seems sound, even though thus far it has only worked in people who started HIV meds within days of being infected (and went off meds later on) or those who had a stem-cell transplant due to life-threatening cancer. (This was the case with "The Berlin Patient," Timothy Ray Brown, whose transplant led to him being basically cured of HIV for a decade now.)

"Right now," Jefferys stresses, "there is no single experimental intervention or approach that is considered likely to become a broadly applicable cure."

And he includes another caveat: "Study designs which restart [HIV meds] as soon as viral load becomes detectable are almost certainly the safest. The higher viral load is allowed to go and the longer it is detectable, the bigger the risk."

And, he adds, previous research has indicated that the risk of going off meds doesn't necessarily emerge immediately but could manifest later -- even after HIV meds are restarted -- in the form of higher chances of heart disease or cancer.

That's sobering information. Still, as poz folks, it's worth our time to start thinking about how much time off treatment or viral detectability we'd be willing to tolerate in the name of vital research. Of course, it's something we need to discuss with our care providers and even our other poz friends.

As for me, I'm intrigued by these studies attempting to introduce the meds-free body to what's called "broadly neutralizing antibodies." Early evidence suggests such agents might tune our natural immune system to fight against HIV, sort of like cancer immunotherapy. And the hope there would be that, even though you were off your usual HIV meds, you'd still be getting suppressive action from the antibodies.

Not that I'm signing up tomorrow, mind you. But I think my research has begun. I'd like to say one day that I played a part in getting to a cure.

Tim Murphy has been living with HIV since 2000 and writing about HIV activism, science and treatment since 1994. He writes for and has been a staffer at POZ, and writes for the New York Times, New York Magazine, Out Magazine, The Advocate, Details and many other publications. He is also the author of the NYC AIDS-era novel Christodora.

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