Risk & Reward
Activist David Evans weighs in on next steps in cure advocacy & research
by Jeannie Wraight
In the late 1980s and throughout the ’90s, AIDS treatment activism helped dramatically speed up AIDS research and the drug approval process, saving countless people from illness and certain death. Now, in 2013, some of the same activists who led the way back then are helping to shape the course we take towards a cure.
David Evans is one such long-term activist and advocate. Currently the Director of Research Advocacy for Project Inform and a Member of the Delaney AIDS Research Enterprise, David has continued to advocate for, and participate in, the creation and implementation of strategies and policies to speed the course of research for treatment and towards a cure for both HIV and hepatitis C for over two decades.
I recently questioned David in regards to his thoughts on some of the key issues arising in HIV cure research, where we currently are in the search for a cure, and what we, as people with HIV and our supporters, can do to help. This is what he had to say:
Jeannie Wraight: What do you see as the biggest barriers to the search for an HIV cure?
David Evans: I think right now the biggest barrier is a lack of understanding on certain key issues and limitations of current technologies. We don’t yet know for sure where all of the hidden and silent HIV that we would have to kill resides. We also don’t have a gold standard for how to measure the reservoir.
There are so many of us involved in the field of HIV who would like to participate in the fight for a cure in some way. How can we as activists, advocates, and people living with HIV support efforts towards a cure?
Probably the most important thing that folks in the United States can do is to demand of their elected officials that more money be given to all research at the NIH. It’s difficult to characterize what “cure” funding is, as a researcher working on cancer or diabetes may ultimately discover something that will be central to an HIV cure, but continued pressure to continue the funding already set aside for cure research in coming years and to hopefully increase it will also be needed.
What types of ethical issues should we expect to confront as more research advances into clinical trials?
One of the biggest ethical issues will be the risks that we will have to ask people with HIV to take in the search for a cure. Many studies will offer no benefit and perhaps involve significant risks. Figuring out how to balance the good and bad will be tough.
What do you believe are some of the most promising cure drugs or strategies at this time?
Though this will have limited impact as it will be reserved for cancer patients, I think stem cell transplants will teach us a lot. That’s what Timothy Brown had. I think very early treatment—within days if possible—also holds great promise. Lastly, the CMV-based vaccine is very, very interesting.
Many people believe that we will never see a cure for HIV because of pharmaceutical company concerns for existing drug profits. Do you think this is a valid concern?
It’s hard to know where to place the balance of the greed of big pharmaceuticals with the desire to conquer scientific challenges and to help people. Gilead, the biggest seller of HIV drugs, is also investing some of the most resources in early cure research.
Can you tell us of any upcoming cure events, meetings, or conferences that we should look out for?
The HIV persistence meeting in Miami in December [just passed]; and the Conference on Retroviruses and Opportunistic Infections this winter should prove interesting.
The Martin Delaney Collaboratory (established in honor of the late activist and founder of Project Inform) is composed of NIH sponsored research groups focusing on HIV eradication. Can you describe some of the research being conducted?
Wow, it’s too hard to describe this in so little space. The endeavor is massive and focused on just about everything in basic, animal and clinical science that you would want to see happening. Almost every type of cure research will ultimately touch something related to the Delaney projects or be influenced by them.
The Reference Portal on HIV Reservoirs and Eradication Strategies: Articles and thoughts from some of the great minds of HIV cure research.
Virochannel: HIV/Hep C Conference coverage with video and written reports and interviews and an online community.
PubMed.gov: Search HIV cure-related abstracts. You will not be able to access the full article without a subscription, but can get a good idea of the study, methods and results.
Jeannie Wraight is the editor-in-chief and co-founder of HIV and HCV Haven (www.hivhaven.com) and a blogger and writer for TheBody.com. She is a member of the Board of Directors of Health People, a community-based organization in the South Bronx and an advisor to TRW (Teach me to Read and Write), a community-based organization in Kampala, Uganda. She lives with her husband in the Bronx, New York.