I’m going to be a bit of a Debbie Downer about the recent HIV cure news
“Did you see the news about the HIV cure?”
That was the text of one message I got earlier this week after early results from the RIVER HIV study were shared with major media publications.
I scrolled through my social media sites—which I quickly realized were saturated with links to the breaking story of an “HIV cure.” I could feel that familiar sinking feeling in my gut. Not again!
This isn’t the first time a premature headline had come out about an HIV cure. All it takes is one publication to sensationalize progress in HIV cure research, plus the reach of the Internet, and there you have it. The story is copied, shared, and re-reported, all with the same type of misleading headline.
Putting my skepticism aside, I clicked through the links and hunted down the original source of the information so I could fully understand what was happening. The Sunday Times of London reported results from a small clinical trial (called RIVER) using aggressive HIV therapies to try to eradicate latent HIV from “reservoirs” in the body. In addition to taking combination ART, study participants were given a “shock and kill” therapy.
The Sunday Times reported that HIV had become undetectable in the blood of one man taking part in the study.
To people living with HIV, this may not seem all that exciting. That’s because many people living with HIV, if on treatment, don’t have detectable levels of virus in the blood.
The RIVER study is in its early stages, and won’t be able to conclusively say that anyone in the study has been “cured” until extensive follow-up occurs. This could be years.
The CHERUB Collaboration has issued a statement, obtained via aidsmap.com, confirming that the study will report its findings in 2018. Until then, researchers emphasize that “we cannot yet state whether any individual has responded to the intervention or been cured.”
Additionally, they point out, “An important clarification is that all participants involved in the study will be expected to have no HIV in their blood because they are receiving antiretroviral therapy – these are the standard drugs we use to treat HIV. This does not mean they have been cured as some headlines have suggested. This does mean that their immune systems will recover and that they will not transmit the virus.”
I am all for HIV headlines in mainstream news because it helps keep the conversation alive and going. But let’s not give false hope to people who may not have the time or desire to read beyond a catchy title and seek out the facts. It’s very easy for those of us within the HIV community to forget that not everyone reads all the insider information and websites that we see and read on a daily basis on our newsfeeds. And it’s frustrating when headlines give a false sense of hope to people living with HIV, people who love and support people living with HIV, or even to those who aren’t personally affected by HIV.
As a person living with HIV, I’m pretty tuned in to the world of HIV/AIDS. That includes new and developing treatments, research studies going on around the world, and the biology behind HIV infection. That knowledge give me a filter—and way to process the inaccurate, misleading or sensationalized media reports about HIV. But I realize that people who aren’t part of that world may not view HIV news with that same skeptical eye.
I can’t place the blame on the average person that isn’t tuned into the realities of HIV, as they are just reading a headline and possibly clicking on the article to read a bit more. These types of sensationalized headlines are exciting, and they cause one to want to click, read and share, without really taking the time to understand what is being reported.
But I was disappointed to see HIV agencies re-posting this particular news headline without any context or explanation about what they were sharing. I recommend, if you’re going to share this news, understand it first. Think about the impact your post might have on people living with HIV.
At least for me, I ended up fielding a barrage of texts and messages online about the supposed “cure.”
I knew I’d have to play the role of “Debbie Downer,” when I replied to each message—saying, although I had heard the news, the headline was misleading. The key takeaway from the research, I shared, is that it could be one tiny step toward a cure for HIV, with the key takeaway being “one day.”
The hardest message to respond to was from my cousin, a man who has just moved from Cuba to the U.S. When I was in Cuba visiting him last year and the year before, he was very supportive of me being open with him about me living with HIV. He even helped me a few times, gathering research I could use for my articles about Cuba and HIV.
His long message was so hopeful, and he was so excited to share with me all that he had read about the possible cure on a Spanish language website. He wanted to know all about it and when I would be getting more information on how it all worked. His message warranted a phone call—more than a text. Hearing the sound of sadness and disappointment in his voice when I explained to him what he had actually read is an accurate representation of how I feel each time this occurs.
I’m someone who wants nothing more than to be alive the day we actually see a cure happen—and one that’s accessible and possible for many people living with HIV. But let’s temper our expectations, and take the time to understand exactly what we’re learning from HIV cure research.
David is a nationally recognized HIV advocate and writer who contributes to HIV focused publications including POZ, Plus, Positively Aware and The Body. Additionally, he focuses on travel writing and spends approximately 90% of each month traveling the world on different assignments. To read more of his HIV writing, visit his online portfolio, or follow him on Twitter.