When will medical science find an actual HIV cure? Perhaps by 2020, if the newly established amfAR Institute for HIV Cure Research in San Francisco, part of a $100 million investment by the nonprofit organization amfAR (The Foundation for AIDS Research) and the University of California at San Francisco (UCSF), reaches its ambitious goal.
Designer Kenneth Cole, a member of amfAR’s board since 1987 and the nonprofit’s chairman for the past 11 years, recalled a time when the pervasiveness of the stigma of HIV was paralyzing. “We have come far, but we ‘amfAR’ from where we need to be,” he said at the November 30 press conference announcing the award to create the institute. “We created a goal of putting HIV behind us … and I, for one, won’t rest until we achieve it.”
Likening an HIV cure to the huge, collaborative U.S. successes of the Manhattan Project to build an atomic bomb and NASA’s race to the moon, amfAR’s chief executive officer Kevin Robert Frost announced at the briefing that the competitive award for the institute, which was sought after by many medical institutions, will go to the UCSF campus.
The institute isn’t up and running yet, but it will be on January 1, 2016. “This collaborative venture is unique, housed at UCSF, but including other institutions and companies, like Gladstone Center for AIDS Research, the Oregon National Primate Research Center, and Gilead Sciences,” explained Frost.
A Legacy of Hope for an HIV Cure in San Francisco
Matt Sharp, an HIV patient advocate diagnosed in the 1980s, spoke at the press conference about living with HIV for half of his life and coming to San Francisco because it’s welcoming and inclusive — and a model city when it comes to AIDS treatment.
He also talked about how far HIV research has come: from a time when the only distinguishing characteristics of having HIV/AIDS were the red patches of Kaposi sarcoma — a rare skin cancer he described as a scarlet letter of the disease — to the current era of treatment successes. “I lost count of how many trials I’ve been in,” he said. “It’s amazing I’m alive to bear witness to this focus on a cure.”
But amfAR and UCSF researchers face seriously complex challenges. Limitations of the science, inadequate funds for research, and even the lack of transparency among researchers all come into play.
Tough Barriers to an HIV Cure
“In my view, obviously the science is hard. The challenge has become a technological one,” Frost says. While HIV is treatable, there is yet no cure for the more than 1.2 million people living with HIV in the United States, according to the Centers for Disease Control and Prevention.
Researchers such as Paul Volberding, MD, professor of medicine at UCSF and director of its AIDS Research Institute, also recognize a number of barriers to an HIV cure. For Dr. Volberding, one of the biggest hurdles is the invisibility of the virus, because HIV inserts its DNA into the host — the human genome of the patient. “HIV is really a great example of a retrovirus,” Volberding says. “It becomes a genetic disease. It puts its genes into your genes, and it hides there.” Discovering how to activate silent, hidden copies of HIV — without activating other things they don’t want to — is the real challenge for researchers.
“We know that there are cells hiding the virus that are lying dormant in the body,” he says. But clinicians need to know where the HIV virus is in order to get rid of it completely and declare a patient cured.
It’s not easy to do this, Volberding says, because the HIV is not only in a patient’s blood, but also in their cells and tissues. HIV is in their DNA. “If we had a better way to measure a dormant virus, this would help,” he says. “A lot of research is going into it. We’re going to learn a lot in the process.” Researchers will be working in the lab at the new institute to find and measure HIV where the virus continues to hide, and bring these findings into the clinic.
RELATED: HIV: Are You Putting Yourself at Risk?
The four top questions the institute will take on, according to Frost, are:
- Where are the HIV reservoirs in the body?
- How do they become established?
- How much HIV virus is in them?
- How can HIV reservoirs be safely gotten rid of?
“It may be that we don’t have a cure by 2020,” Frost says, “but we’ll be closer than we are now.”
Investing in and Sharing an HIV Cure
Frost sees a need for more support for basic research. “I believe we are not making enough of the right investments in creative, innovative science. Because of a flat-funded NIH (National Institutes of Health), researchers are not getting the money they need,” he says. In his view, the main barrier is a lack of financial investment — something amfAR’s working on actively by funding the new institute.
But Cole takes it a step further and looks at how research operates. “I think that a lot is investment, but how efficient is the process?” he asks. “There’s a lot of redundancy and duplication in research when everyone operates in a vacuum.”
He explains that amfAR set up the new consortium to get around this and to encourage the sharing of results: “With this new initiative, we are encouraging institutions to work collectively and to share results, so it’s a bigger, more motivated collaboration. It will be less competitive — like-minded people working with a similar goal, and everyone sharing in the success.”
Volberding acknowledges that transparency is an issue in HIV research today. “I think there’s a growing awareness in science and medicine that the waiting — doing research, writing it up, it sits at a journal for months, you have to revise it — it’s too long,” he says.
Volberding believes the institute will change this. “We want to share the information in real time,” he says. “We’re not sure how we’re going to do that yet … we want to be first, but we also want everyone to make progress.”
The field is moving quickly — faster than traditional routes of sharing can, he says about new HIV research. “We’ll put all our information up for the public as soon as we can,” he says.
What You Can Do for an HIV Cure
Get involved. The opportunity to be part of HIV research is better at UCSF than almost anywhere in the Bay Area or the country overall, says Frost. “A person with HIV should come here and look at the clinical trials and look to see if they are a fit,” he says. “One of the most altruistic things a patient can do is to get involved.”
Get excited. “We’re hopeful that people will get excited by this,” says Volberding. “The approach is unique. We’re going to be really fast-moving. The goal is absolutely to get to the point where we are doing clinical trials — in people.” He points out that everyone who wants to can get involved; both HIV-infected and non-infected people can join the effort.
Eradicate stigma. “The underlying nuance is stigma. Stigma is not as bad as it was, but it still goes on. Only when we make [care]accessible will we get everyone in,” says Cole.
Give your support. We can all do something, says Cole: “Support amfAR, and look for the various ways to do this on our website. And there are public policy things people can get involved with in addressing stigma.”
Protect yourself. “Encourage everyone to get tested and to take precautions,” Cole urges.
Will HIV meet its end by 2020? No one knows for sure. But as David Campos, a member of the San Francisco Board of Supervisors for District 9, said at the briefing, “People from all over the world come to San Francisco because they see it as a safe haven. As a gay man, I’m especially proud to see that HIV, at some point, will find its end in San Francisco. Now let’s go find a cure.”