The AIDS Policy Project, headquartered in Philadelphia and San Francisco, is taking a rarely employed approach to the HIV/AIDS epidemic, pressing not for enhanced prevention and treatment methods but for a more final solution: a cure.
Kate Krauss, founder and executive director of the project, said she and other staffers have worked both in the prevention and treatment arenas and, while both are crucial in the fight against HIV/AIDS, researchers need to start looking further into the future.
“We know that prevention is not going to save the lives of the 33 million people who have AIDS now,” she said. “And treatment is very different when it comes to different countries: There are about 15 million people who need treatment immediately, but only about 36 percent are actually receiving it. The number of people with AIDS is increasing and most don’t have access to treatment, so they’re just dying.”
Krauss said she’s seen a disconnect between those in the HIV/AIDS community and HIV/AIDS researchers on this issue.
“Many researchers think people with AIDS are perfectly happy with their treatment and aren’t concerned about wanting a cure,” Krauss noted. “But people we’ve worked with who have AIDS are just stunned by that. Most of them have no idea that there would be any confusion over whether people with AIDS would want a cure found.”
Just recently, Krauss was Skyped in the middle of the night by an HIV-positive man in Pakistan, who was interested in learning more about the work of The AIDS Policy Project. She said the man was on his second line of therapy, which wasn’t working well, and worried that he wouldn’t be able to afford to keep trying new drug combinations.
Despite countless situations like that man’s, however, Krauss said researchers in the field have historically been resistant to opening up a discussion about a cure, an effort The AIDS Policy Project is hoping to fuel.
“A lot of researchers have said it’s no longer necessary to look for a cure because the treatments are so tremendous. I’ve seen researchers use air quotes around the word ‘cure,’ and seen them whisper the word. And that’s really an issue. We want to connect activists and people with AIDS with the researchers so they can just shake them and say, ‘Yes, you’re doing great work, but we do need a cure.’”
The AIDS Policy Project last week hosted a town-hall meeting in Philadelphia to help educate the public about cure research.
One of the most well-known efforts is the Berlin Patient, an HIV-positive German man with leukemia whose infection was cured in 2008 after he received a stem-cell transplant from a donor with a CCR5 double deletion, a mutation that makes cells highly resistant to AIDS.
That case has spurred a number of research initiatives that utilize less risky methods, Krauss said.
Cure research is being conducted at the University of Pennsylvania by Drs. Carl June and Pablo Tebas, as well as at the Quest lab in San Francisco, the University of California at Los Angeles and the University of Southern California.
At the latter location, Dr. Paula Cannon administered human stem-cell transplants in mice to create human immune systems and then infected the mice with HIV. Mice whose systems had been genetically modified to removethe CCR5 gene maintained their health.
Krauss said her agency is advocating for such studies to eventually use human subjects.
“The idea in the research community is that people with AIDS aren’t going to volunteer for a study with a less-than standard of care,” she said. “But if people know that this is work being done to find a cure and that it’s safe, they’re going to volunteer.”
Krauss said the organization’s primary focus right now is lobbying for funding for cure research. She said the National Institutes for Health’s funding for a cure accounts for only about 3 percent of its total AIDS budget, with the rest of the money going to vaccines, health-disparities research, treatment and other areas.
The AIDS Policy Project is currently promoting a letter-writing campaign to NIH director Francis Collins to urge him to bring the agency’s AIDS cure research spending up to $240 million, about quadruple the current allocation.
“We have several different promising AIDS cure research strategies being pursued, but there’s just not enough money,” Krauss said. “Researchers are scrambling for crumbs of money, and this is a pandemic. We need a cure, and we’re not going to get it if we don’t have enough money to fund the research.”
For more information or to participate in the letter-writing campaign, visit www.aidspolicyproject.org
Jen Colletta can be reached at [email protected].