A Movement for Cure, One Advocate at a Time

September 16, 2019

Jeanne Baron is AVAC’s Senior Editor and Producer of Px Pulse.

The Advocacy-for-Cure Academy, a partnership of AVAC and IAS, has been developing its cutting-edge curriculum, having completed two annual sessions and promising more in the years to come, just as the field of cure research and advocacy has accelerated on the heels of high-profile breakthroughs.

This is a time like no other before for cure research in HIV. The second person in the history of the virus was determined to be cured, announced in early 2019. This event came as heightened interest in the progress of cure-related research can be felt in standing-room-only sessions at scientific conferences. It’s no surprise that for every available seat at the most recent Advocacy-For-Cure Academy there were 10 times as many applicants who vied to fill them.

The Advocacy-For-Cure Academy has set out to prepare a generation of cure advocates. Over three days of the 2019 Academy in May, leading cure researchers and seasoned advocates explored the current strategies under investigation. They took a focused look at adult versus pediatric immune science and the implications for the cure strategies being pursued in different populations. They turned over the pros and cons of treatment interruption, boned up on points of advocacy around trial design for small, early-phase in human trials, and more.

Long-time advocate in HIV, Botswana’s Kennedy Mupeli of the Centre for Youth of Hope, who is also a former AVAC Fellow, was one of 27 applicants who won a seat at the Academy held in Gabarone, Bostwana.

“What I learned these couple of day—about things like latency-reversing agents [drugs that force latent HIV to express itself so that the immune system can find and kill it] or a therapeutic vaccine [a vaccine for inducing remission rather than prevention]—it’s going to be up to advocates to connect both communities and policy makers to this information.”

And Mupeli had no trouble explaining the value of this education, “Long-term ART, that’s what we have right now, but the failure to eradicate HIV in the long term is not acceptable. We need to bring hope to the community.”

Yet fundamental questions remain to be solved before a viable strategy can emerge. For one thing, scientists are struggling to measure the viral reservoir—a key consideration when trying to evaluate if an intervention has eliminated latent HIV. The uncertainty leaves researchers looking at treatment interruption (aka, analytic treatment interruption or ATI) as the only sure-fire method to learn if HIV is still in the body or not. But interrupting treatment to test an unproven strategy raises unique challenges and ethical questions, particularly when the trials may involve placebos to account for the number of individuals who naturally control the virus after treatment known as post-treatment control. The pressure is on.

“It’s time for a cadre of advocates with expertise in cure research to be at the table, pushing for advances that will empower affected communities and be centered in human rights,” said another attendee at the 2019 Academy, Ulanda Mtamba, Country Director of Advancing Girls’ Education in Africa and also a former AVAC fellow.

Among other things, the field needs advocates offering a critical eye on trial designs and helping communities understand the science as well as the risks and benefits of participating in research. This is all the more urgent, as Mupeli said, because the interest among researchers is not matched by even general awareness of these advances among communities most affected by HIV.

“Cure-related research is happening but no one has any idea of the work being done on this. I hear from many stakeholders in my community. They know about advances, we talk about 95-95-95, we talk about viral suppression, but nothing whatsoever about cure.”

But with the announcement earlier this year of the second known cure on record, awareness may be on the rise. The agenda in Gabarone featured an overview of the science behind the two only known cures to date—both involving bone marrow transplants among patients with cancer and HIV. Participants learned why these two cases cannot be scaled to the 37.9 million who are infected today, and why and how they do inform the science of other strategies like cell and gene therapy.

AVAC’s Jessica Salzwedel, who coordinates the Academy, said participants learned “when and if the cohort of people who have achieved long-term remission from a bone marrow transplant grows from 2 to something bigger, researchers might be able to find commonalities in their genes or in the immunologic pathways. If you can find a common thread among them you can use those pathways to find curative strategies—like a drug or a gene manipulator or a new target—that could be effective for a broader population.”

Attendees learned the basics of a widening number of strategies under investigation such as cell and gene therapy, latency reversal, immune-based strategies and block and lock.

Mtamba digested these new concepts but was just as rapt by a history lesson. A morning session by Kenya’s Maurine Murenga, founder of the Lean on Me foundation covered the role civil society played in major advances in HIV treatment and prevention. “That journey really struck me. Civil society has done so much. They had their demands and were not afraid. It just happened again around the guidelines the WHO has issued for dolutegravir. A battle may look impossible, but we can win. The ultimate goal is finding a cure and the time has come to fight for it.”

Since the 2019 Academy ended, both Mtamba and Mupeli have expanded their work in cure advocacy. Mtamba held a media training with Malawi journalists who were learning about cure for the first time and published stories. More trainings are planned for media and Malawi’s civil society. Mupeli who conducts trainings on HIV across Botswana now includes a section on cure, and he’s developing a cure manual to leave behind. “The idea is to expand this movement across Botswana.”

With the help of the Academy, it won’t just be Botswana that sees a growing movement.