With growing talk of an HIV cure, the defeatHIV Community Advisory Board, along with the University of Washington Center for AIDS Research, and BABES Network-YWCA worked together to put on a “Community Q & A on HIV Cures” event April 2 with visiting scientist Robert Siliciano, a Professor of molecular biology and genetics at Johns Hopkins University and one of the world’s leading researchers on HIV. Here is a perspective from one of the attendees Michael Louella, Outreach Coordinator with the UW AIDS Clinical Trial Unit, Community Advisory Coordinator for defeatHIV, and a Community Liaison with the UW Center for AIDS Research.

By Michael Louella

Nina Shapiro, the senior editor of the Seattle Weekly did an excellent job of opening the conversation, and soon into her introduction the audience started blurting out questions to Siliciano, and we were off!

Nina wrote a piece for The Seattle Weekly, “HIV ‘Cure’ Likely to Be Temporary, Says Leading Scientist Robert Siliciano.” If you missed the event, you should check out her piece for great summary of what you missed.       

Nina was struck by something that Siliciano said in a very plainspoken way that hit home for many people: Any HIV cure we may achieve may not be forever. In fact, we may need to begin to use language and word choices more commonly associated with other diseases and conditions that plague our species. I turn to Wikipedia to help explain this:

A cure is the end of a medical condition…A remission is a temporary end to the medical signs and symptoms of an incurable disease. A disease is said to be incurable if there is always a chance of the patient relapsing, no matter how long the patient has been in remission… A person that has successfully managed a disease, such as diabetes mellitus, so that it produces no undesirable symptoms for the moment, but without actually permanently ending it, is not cured.

The people who attended were well-informed about research into an HIV cure, thoughtful about the ramifications of current findings and probingly curious about the large unknowns before us. The impressive turnout of 70 or more people included:

• The staff and clients of BABES, including one of the founders, Pat Migliore.
• Staff from People of Color Against AIDS Network (POCAAN) and Project NEON (Needle Exchange and Sex Education Outreach Network).
• Many clients of Madison Clinic, (an HIV/AIDS clinic), some of whom live partially at the YWCA.
• HIV Vaccine Trials Unit staff and Community Advisory Board members.
• Also, a friend of mine whom I cannot name, but who has been skeptical about all this talk about cure research. When I last saw him during the event, he had tears in his eyes. It is his face and his eyes that linger with me and the radical shift that simply and realistically talking about cure research, I believe, was what brought on those tears that brimmed his eyes.

The questions during our community event were widely varied: from asking about hydrogen peroxide as a cure for HIV to asking about the potential high cost of any curative therapy for HIV ($1,000 a pill for the new medicines that cure hepatitis C is a great warning to us all about this potential).

One of the staff of BABES Network-YWCA asked Siliciano for his opinion at the end of the event: Which would come first: an HIV cure or an HIV vaccine? I’m sure you are curious about his answer. We all were. In fact, the scientists who met with Siliciano the next day heard about this woman’s question, and they as well wanted to know how he answered it. He didn’t come down on one side or the other, but stressed the importance of a vaccine and a cure to end the HIV epidemic.

Afterwards, Dr. Siliciano said he was quite impressed the event, and with our Seattle community, and the kinds of questions asked. He mentioned the event to many of the doctors and scientists he visited with the following day, and news of this reached me before we again met with him for a roundtable talk about HIV cure with members of the UW CFAR Scientific Working Group on Curative Therapies for HIV. The roundtable’s free-flowing conversation with Seattle’s leading scientists discussing current cure strategies stands for me as a model for what we need to see more of in the search for an HIV cure: The free exchange of ideas that is the true hallmark of collaboration.

I wanted to conclude with this one thought to share, especially for those who are smarting from realizing just how difficult it’s going to be to eradicate HIV from the body, let alone achieve some sort of remission of the infection for an ill-defined length of time. Taking one pill daily to treat HIV was unheard of 20 years ago – a pipe dream at best.  Anyone who spoke of this idea 20 years ago would have been looked upon as sweet, but most likely deluded-- if not downright crazy.

Today’s reality was yesterday’s fantasy.

If you are discouraged, plagued by doubt or despair,  remember this point.

There are no promises.

Only hope.

And science.

Research into a cure for HIV is real. Only through clinical research will we find that cure. There’s no guarantee we will ever find one that is permanent and accessible to everyone. But the fact that there might be a chance to wrestle a new reality for people living with HIV from what currently feels like a fantasy is truly a source of hope for me. I hope it is for a lot of you as well.