By Lee Storrow
More than three decades into the global HIV epidemic, the question looms: “How close are we to a cure?”
The news from Durban is that we’re still a long way off – in part because of the many ethical implications involved researching a cure for HIV.
Because researchers work with real people, they face a quandary about how to gather vital information about a long-term cure for HIV without harming those currently living with the virus now.
For instance, maintaining one’s regular medication is vital to viral suppression. If you are HIV positive and virally suppressed, you will likely live a long and healthy life and are highly unlikely to transmit HIV.
But to truly test potential cures and gather vital information, researchers might need to ask individuals to stop taking their HIV medications.
On Thursday, July 21st, two UNC-Chapel Hill researchers presented at the International Conference on AIDS in Durban, South Africa about their work to help move the world toward an HIV cure. Karine Dube presented an analysis that looked at the ethical implications for asking patients to stop taking HIV medication for cure studies.
Her analysis identified three criteria to justify stopping treatment: There must be a strong scientific justification for the pause; the study must minimize the potential risks to participants; and there needs to be a robust process for informed consent.
Clinical researchers must work with social scientists, behavioral researchers and ethicists to determine best practices for studies that require treatment interruption.
UNC Chapel Hill’s Allison Mathews took a different approach to cure research: She evaluated an innovative crowdsourcing contest, 2BeatHIV, that she hosted.
2BeatHIV primarily engaged black 18- to 35-year-olds mostly in Durham, but participation was open to anyone. The contest engaged several hundred North Carolinians through in-person events, focus groups and community forums, soliciting in images and videos what an HIV cure might mean to people.
Courtney Shane won first prize in this year’s “What does HIV cure mean to you?” Innovation Challenge.
More than 150,000 unique viewers looked at the images on the project’s website. During the question and answer period after Mathews’ presentation, a man from Washington State shared that he had participated in the contest and came in second place!
2BeatHIV provides an outlet for the community to address social and ethical aspects of HIV cure research that might not be easily found through a traditional interview or questionnaire.
I asked Dr. Mathews if she thought the project could help recruit participants in potential cure studies.
She said the ultimate goal would be to recruit HIV positive participants into potential cure studies.
“We are working to do community engagement with the goal of building trust and providing a safe, fun and creative space for people to voice their concerns about HIV cure research before having to make a decision about whether to participate or not,” she said.
“I think that [crowdsourcing contests] would be an excellent way to get community members to help design the best ways to implement recruitment.”
Even with all this exciting research, though, there’s still little indication as to how long it would realistically take until we have a viable cure.
I asked Wes Thompson, a North Carolina participant at the conference, to shed some light on the timeline to finding a cure. Thompson is a board certified physician assistant, owner of Ballantyne Family Medicine in Charlotte, and a member of the NC AIDS Action Network Board of Directors.
“Attacking the reservoirs and destroying the latent or hidden virus is our greatest deterrent and challenge to finding a cure,” he explained. “A cure will likely be a multi-pronged approach and thus we are not close.”
He said a cure will likely combine medications that suppress the virus, others that agitate the virus out of hiding, and perhaps, a vaccine added on top.
HIV mutates at a rate of one percent each year, he explained, with a mutation occurring in the reservoir of suppressed patients at the rate of one mutation every 24 seconds. Scientists currently do not have the technology to create a mutating vaccine that could keep up with mutating HIV.
“Current literature suggests that we are more than 10 years away from a cure,” Thompson said.
After this conference, I feel more confident in my ability to answer the question, “How close are we to a cure?”
Unfortunately, that answer is still “a long way away.”
Until then, the movement must recommit to expanding access to anti-viral medication. For those who consistently take their medication and are under the care of a provider, a functional, cure-consistent medication stops the spread of HIV and doesn’t negatively impact their health.