Scientists, Activists Gather for HIV Cure
Aug. 25, 2014
By Mary Engel / Fred Hutch News Service
Matt Sharp is no scientist. But when he joins researchers from around the country tomorrow for a conference on
using gene therapy to cure HIV, he will bring a perspective that few others in the room can match.
Sharp, 58, has been living with HIV since 1988. He is one of the activists who, early on, worked to make sure
that people like him have a seat at the research table, as they will at the two-day Conference on Cell and Gene
Therapy for HIV Cure at Fred Hutchinson Cancer Research Center.
“People who are going to be benefitting from the therapies should be at the table when the decisions are made,
which is what people with HIV have said from the very beginning,” Sharp said in a phone interview last week from
his home in San Francisco. “We demanded it at first. We made it happen. Now it’s become where if the community is
not there, there’s something really wrong.”
Dr. Hans-Peter Kiem, a stem cell transplant researcher in the Hutch’s Clinical Research Division and a
co-host of today’s conference, agreed.
“It’s critical that people who are affected by this type of research are closely involved and can give us
feedback,” he said.
Kiem and Dr. Keith Jerome, an expert in viral infections at the Hutch’s Vaccine and Infectious Diseases
Division, lead a public-private consortium of researchers investigating using genetically modified stem cells to
cure HIV. Called defeatHIV, it is one of three distinct approaches to cure research funded by the National
Institutes of Health and named the Martin Delaney Collaboratories—after a prominent AIDS activist and educator.
Each collaboratory has a community advisory board; Sharp is the boards’ national coordinator.
What is the norm today was radical in 1989 when activists stormed the fifth International AIDS Conference in
Montreal demanding a voice. People with AIDS urged scientists to allow those most affected by the epidemic to help
determine acceptable risks in clinical trials. To hold their own in meetings, they learned everything they could
about their disease, reviewing the latest research in medical journals and organizing classes.
“People were dying,” Sharp said. “It was a desperate time.”
Back in the day, activists held bake sales and sold T-shirts and buttons to pay for crashing conferences. Today,
meeting organizers invite advocates and find sponsors to cover their travel and registration costs. Gilead Sciences
and Sangamo BioSciences are underwriting the costs for Sharp and eight other community advisory board members to
attend this week’s conference.
The collaboration between activists and scientists has been fruitful.
“I credit patients being at the table with having over 25 antiretroviral drugs approved for HIV right now,”
Sharp said. “We’re seeing more and more disease groups trying to educate their own so they can help with clinical
trial design, push the effort to get things done faster.”
For Sharp as for so many others with HIV, politics is personal. Diagnosed years before there were effective
treatments, Sharp lost two partners to the disease. He credits his survival to participating in clinical trials of
That is one more perspective that Sharp brings to this week’s conference: He participated in one of the first
clinical trials of gene therapy for HIV.
Gene therapy for HIV
In 2010, Sharp participated in a small clinical trial in San Francisco. His blood was drawn and his T cells were
filtered out and genetically altered to mimic a rare gene mutation that confers resistance to HIV. The cells were
then returned to his body.
The goal of the trial was simply to see if altering and returning the genes worked and could be done safely. For
Sharp, the results were better than expected: His T-cell count, which had been low before, more than doubled and
has remained high, relieving him of the regular bouts of pneumonia he used to suffer.
DefeatHIV is investigating a similar approach using genetically modified stem cells—the proginator cells that
give rise to T cells and the rest of the immune system. This approach most closely resembles the case that
revitalized hope in finding a cure for HIV, that of Timothy Ray Brown. The Seattle-born Brown received a stem-cell
transplant in Germany in 2007 to treat acute myeloid leukemia. His German doctor decided to try to also cure
Brown’s HIV infection by finding a stem cell donor who carried two copies of the rare gene mutation.
Before the treatment, Brown had been controlling his HIV with combination antiretroviral drugs. Combination
therapy, while life-saving, is not a cure. Reservoirs of latent HIV-infected cells hide in the body. If a person
stops taking the daily pill, the virus roars back. But Brown has not taken antiretroviral medicine since the stem
cell transplant and his virus has not rebounded, giving him the distinction of being the first person
pronounced—however cautiously—cured of HIV.
Using Brown’s case as a blueprint, defeatHIV plans to take an HIV-infected patient’s own stem cells and knock
out or disable the gene that acts as the HIV doorway, then return the modified cells to the patient.
Sharp said that he is pleased to see an entire conference devoted to gene therapy approaches, a first for HIV
“This is the first kind of meeting I’ve been to that is actually highlighting this approach,” Sharp said. Right
now we see that people who are doing the ‘shock and kill’ approaches, the immunological approaches, are getting
more attention in the scientific field. I want to try to get the appropriate place on the map for cell and gene
A new generation of advocates
At 38, a generation younger than Sharp, Paris Mullen will also attend the conference this week as a member of
defeatHIV’s community advisory board. He came to HIV activism through his work as an educator and health advocate
for communities of color. African Americans are particularly hard hit by the HIV epidemic, accounting for almost
half of all new infections as well as almost half of all people living with HIV. Yet bringing black people with HIV
to the table has been complicated by historic distrust of medical research dating back to the infamous Tuskegee
experiment in which poor black men were used as guinea pigs as scientists studied the effects of untreated
Being on the advisory board is “a unique opportunity to walk between the world of scientists and the world of
communities not ordinarily connected to or trusting of science,” Mullen said.
One of his goals is to come up with the right language to talk to African Americans and others about a cure for
HIV, starting with what the word itself means.
Scientists have said that the most realistic goal may be a so-called “functional cure” that doesn’t necessarily
eradicate all traces of the virus but eliminates the need to take daily pills. They are also careful not to raise
hopes that a cure of any kind will be widely available any time soon.
It’s crucial to make these points clearly, said Mullen. “If people think cure means eradication and then find
[the virus] is not eradicated, they’ll feel they were lied to,” he said.
Mullen hopes to learn more about the science of cure research so that he can explain it to the communities he
works with. “Every opportunity we have to make science make sense to lay people is important,” he said.
At the same time, he hopes that his presence reminds conference attendees that their work remains urgent, even
if activists are no longer storming the gates.
“People assume that HIV is over,” Sharp said. “We know until there’s a cure, it’s not over. That’s something
that everybody at the meeting will certainly comprehend, but I don’t think the larger, global community quite gets
The public is invited to hear Nobel laureate Françoise Barré-Sinoussi — who in 1983 co-discovered the virus
that causes AIDS — at 7 p.m. Aug. 27 at Fred Hutch’s Pelton Auditorium. Barré-Sinoussi will be the keynote speaker
on Aug. 26 at the first Conference on Cell and Gene Therapy for HIV, hosted by defeatHIV, Fred Hutch, the
University of Washington Center for AIDS Research and the UW Virology Division.
Article Source: http://www.fhcrc.org/en/news/center-news/2014/08/HIV-cure-conference-fred-hutch.html