'Infuriating': People With HIV, Doctors, Advocates Speak Out on Bad 'HIV Cure' Reporting

By JD Davids

From TheBody.com

 

October 4, 2016

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JD Davids (Credit: Selfie by JD Davids)

Many people with HIV and the people who love and work with them are yearning for more informed public discussion about HIV. We know that accurate reporting, sound information and meaningful dialogue about HIV can literally be lifesaving -- and we celebrate when we see public attention drawn in constructive ways to the decades-long pandemic.

And then, there's days like yesterday.

Maybe it was a member of your family, a work colleague or a Facebook friend who, well, actually you're not sure who they are, but they're your "friend" nonetheless. But if you're reading this article right now, it's likely that someone reached out to you this week to share the "good news" that an HIV cure is heading your way.

And, as you probably have done time and time again, you gently -- or firmly -- reached back to say, well, no.

I help run TheBody.com's Facebook page, and that means I get alerts about what's getting a lot of traffic on HIV topics on that platform and started getting ones like this:

Oh internet.

 

Here's what people who are contacting you think: A British fellow is cured of HIV because they can't find it in his body! And it's part of research so more cured soon, very, very soon!

Here's what really happened: A guy in a clinical trial that is studying a possible approach to an HIV cure became undetectable on HIV treatment after completing the trial's course of therapy. He's still on treatment. Also, he started this regimen -- four antiretrovirals plus another drug plus two vaccines -- within six months of becoming HIV positive.

I mean, it's a cool study; I'll give you that. But it's neither a new approach nor ready for prime time. As HIV physician and researcher David Wohl, M.D., of the University of North Carolina School of Medicine pointed out to us:

One of the most surprising aspects of this article in the British press is its extremely premature excitement that we are on the "brink" of an HIV cure. At best, this is a misunderstanding of the scientific process and, at worst, sensationalism. So-called kick and kill studies are not new, and their goal is less to eradicate every last virion of HIV than to see how much of the latent reservoir can be affected by the strategies being tested. These are the first steps along a long road. A science editor at a reputable paper should know better.

It will take years and lots of follow-up before anyone would know whether the guy and/or any of his 49 fellow trial participants had been cured of HIV. And even if they were, it may require a particular blend of concoctions another set of years away from broad availability, and it may only work for the rare few who find out they have HIV when they are in primary infection (i.e., none of my friends).

Thanks to Roger Pebody for quickly writing this clear and concise story with actual facts to help counter the misleading slant of the original The Sunday Times story and the outright fallacies in the stories that followed. Feel free to share.

Not Just Inaccurate Reporting. Actually Harmful.

And these stories aren't just inaccurate. They're harmful. People feel hopeful, then their hope is dashed. They learn to ignore HIV research news, including that which is responsible and accurate. Providers and advocates have to spend time sensitively debunking the misinformation and supporting those who are disappointed. All this takes time and spirit and energy that then can't go toward proactive efforts to, well, cure HIV for real, while doing the hard work to honor and improve and save our own and other people's lives in the here and now.

"A patient of mine asked me today about this article. He was full of hope that a cure was close, based on what he read. How disappointed he was when I had to play down expectations and explain that this was a small experiment and not yet a breakthrough," Wohl told TheBody.com yesterday. "My concern with such media reports is that by yelling, 'Cure!' so frequently, we risk drowning out the real advances or creating cynicism in the community about developments in HIV care."

Ben Young, M.D., Ph.D., urges media outlets to be extremely cautious when using the word "cure" in reporting about HIV or other disease treatments. The senior vice president and chief medical officer of the International Association of Providers of AIDS Care (and frequent TheBody.com contributor) said:

It's obvious that there's tremendous temptation from media to report anything that might be related to a HIV cure: It results in traffic and lots of clicks. Moreover, investigators (for the same reasons) might want to use the cure adjective in reports. The problem is that inaccurate or premature claims of a cure may give people living with HIV the very false impression that a cure is just around the corner (unfortunately, it's not) or that the failure of a cure to arrive quickly is a pharmaceutical company conspiracy to hold back curative treatments over the profitable chronic treatment approaches (it's also not the case). As was well-said by Carl Sagan, "extraordinary claims require extraordinary evidence."

Here's some of the things folks on my Facebook page had to say when I asked them what it was like to hear the "news" yesterday:

"As a [person living with HIV] who follows the research pretty closely, I'm tired and disgusted by having to debunk these overblown headlines and pick apart the usually poorly written stories every couple of weeks," said Michael Luciano, a peer educator and chair of the Medical University of South Carolina/Lowcountry AIDS Services Consumer Advisory Board. He added:

Also, as a treatment educator with constant contact with several hundred other [persons living with HIV/AIDS], I've seen this situation provoke anger, frustration and confusion in my clients. Some folks respond to the cycle of having hopes raised then dashed repeatedly by espousing the theory that Big Pharma has a cure but hides it to continue making exorbitant profits. Some of them develop a deep mistrust of antiretrovirals and of treatment and the medical establishment in general. Others sometimes respond to the boom and bust cycle by shutting themselves off from any news about new developments and simply stop learning about their condition and how it's treated. Some move from that anger or frustration to depression and despair that there'll ever be a cure, leaving them in danger of giving up and falling out of care. I struggle every time these stories make the rounds of various non-medical media to craft a message of optimism about the current intense interest and activity around cure research while pointing out the errors in the reporting.

"An exhausting and constant game of whack-a-mole. Annoying, too," said David Knopf, a moderator on the massive PrEP [pre-exposure prophylaxis] Facts group on Facebook.
"I hate it," added Mark Milano, a longtime HIV activist (and the publications and education manager at ACRIA) who has done stuff such as take a pan of kitty litter to pharma bro Martin Shkreli's office building. "I've heard false hopes virtually every year since I was diagnosed in 1982. At first, I would get excited -- now I just get angry. And I spend too much time debunking them on [Facebook] and answering questions from my clients!"

Melanie Thompson, M.D., a busy HIV doctor and the founder and principal investigator of the AIDS Research Consortium of Atlanta (ARCA), just had one word: "Infuriating."

TheBody.com contributor David Duran said that friends and family keep forwarding him links or tagging him in posts. "It's incredibly frustrating because the majority of them, even with no malicious intent, don't actually read the article, but instead base it all off a misleading headline," he said. "For those of us that are heavily involved within the HIV world, these type of reports are incredibly infuriating because they are just not factually accurate or misrepresent what is actually occurring."

Larry Bryant Jr., who traveled the country as an organizer for Housing Works and the Campaign to End AIDS (C2EA), said, "it is infuriating and depressing to follow that rabbit hole to a dead end -- for some, literally, giving their last hope, prayers and money."

But he's also turned it into inspiration:

However, for myself -- now living with HIV for more than 30 years -- and others, it allows us to focus on day-to-day management of our health, becoming educated self-advocates and putting equal importance on social determinants (poverty, homelessness, racism, homophobia, etc.). In the case of Black & Brown people -- we should be taking the proactive role of participating in clinical trials and helping to direct and inform the science and research for medications and treatments rather than falling for those "magic pill" headlines.

Here's the full post. Feel free to chime in.

JD Davids is the managing editor for TheBody.com and TheBodyPRO.com.
Follow JD on Twitter: @JDAtTheBody.

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