AIDS Activism's Message in a Bottle
Recently, yet another friend and colleague died of AIDS. Linda Grinberg, head of the Foundation for AIDS and Immune Research, died in her sleep of a heart attack brought on by primary pulmonary hypertension (PPH), which she developed a year ago. PPH is a rare cardiac phenomenon, but can be brought on by HIV infection. Linda was a fearless AIDS treatment activist who had faced death many times since her T cells plummeted to 30 back in 1995. As a straight woman, a child of Hollywood with its wealth and privilege who lived in a swanky suburb of Los Angeles, she didn't need to devote her time or her money to pushing for new treatments for HIV, but she did -- with a determination that belied her failing health. She was the driving force behind the Coalition for Salvage Therapy, pushing for faster access to new antiretroviral agents, and the Structured Treatment Interruptions Workshops, which brought together leading researchers to figure out if these stops and starts in therapy could have some benefit, or at least do no harm.
The last time I saw her was at the last Structured Treatment Interruptions meeting this spring. After it was over, Linda, Martin Delaney, Mark Harrington, and I went up to her room to watch the Academy Awards. Linda's father was the owner of the biggest film library in Hollywood -- Linda was giddy trying to pick out the footage from his stash for the film retrospective that opened the awards. I left after a few Oscars were handed out, the Academy Awards not being my cup of tea. I would have lingered if I knew it was the last time I would see Linda.
With the deaths of Treatment Issues' technical and marketing coordinator, Fred Gormley, my friend the painter Frank Moore, Indian AIDS activist Ashok Pillai (who spoke last June at a GMHC forum on implementing antiretroviral therapy in the developing world), I know four people who have died of AIDS in the past month.
Fred, Frank, and Linda ran out of therapeutic options and had to face the virus without effective antiretroviral cover. Ashok probably died of toxoplasmosis, which is a preventable opportunistic infection -- he did not take Bactrim or perhaps he had no access to it and he was not taking antiretroviral therapy either. Someone tell me again that AIDS is a chronic, manageable disease.
When RITA! asked me to write about the role of activism in the development of new therapies for HIV infection, the topic seemed a bit hackneyed, hashed over. How many times had I written something like this, touting our successes as a movement in speeding up drug approval, streamlining and improving research? With Linda's death, the movement has lost one of its most able and industrious leaders -- Linda was one of the few activists in the country that was the most obsessed with new drug development. She followed each agent's progress, dogging the companies, writing them letters, scheduling meetings and conference calls with their clinical researchers and marketing honchos. She worked as if her life depended on it. Her stamina in the face of her illness was completely remarkable. With Linda's death, the role of activism in drug development now seems once again more critical than ever.
For people living with HIV, it is vital that the pace of drug development keeps ahead of the pace of drug resistance -- this was the goal of Linda's work. She pushed for the rapid assessment of, early access to, and approval of the newest generation of AIDS drugs from tenofovir, to T-20, to atazanavir, and ones even farther back in the pipeline. She also seized upon the idea of stretching out the usefulness of antiretroviral therapy by strategically stopping and starting drugs, in what are now known as strategic treatment interruptions (STIs). Unlike most activists, Linda could also afford to fund some of the best research on STIs and did so through her foundation.
We cannot let up on Linda's quest. We need a new generation of activists to keep at the pharmaceutical companies, who are making smaller investments in AIDS drug development, especially in the expanded access programs, which in earlier years gave tens of thousands of people with AIDS a chance to try the latest therapies when their other options were gone (thus providing important information on the safety of new drugs). Linda's work in getting the Food and Drug Administration to foster collaboration between drug companies in the conduct of salvage therapy trials needs to continue so that companies do not just study their own drugs with each other, which serves marketing concerns and not the clinical research questions that people with HIV need answered as a matter of life and death.
We need to renew our pressure on our public research networks and the National Institutes of Health (NIH) to take up the challenge of research questions that have little commercial incentive for the drug companies to answer on their own. In particular, we need more information on long-term effects of antiretroviral therapy; answers to the basic questions of when to start, switch, and stop these drugs; and comparisons of different regimens head-to-head, even if the constituent drugs are not from the same company. Right now, the drug companies, the NIH, and academic scientists are in collusive paralysis about this kind of public health research. Industry has no interest in doing it. Academic researchers are not interested either since they see no trail of cash for this work from either industry or the NIH. The NIH says that these studies cannot be done, or the system is not set up to do them, or that researchers are not interested in these questions because the answers will not advance their careers. Meanwhile, people living with HIV sit waiting for some advice about how to use current drugs in the best way, without a lot of information to go on.
So, I could have written a dry history of our past triumphs and the history we have made as treatment activists, but I do not feel too victorious nowadays. We are losing ground on some of our important advances (e.g., the decrease and disappearance of expanded access programs) and after more than a decade have been unable to successfully confront some entrenched problems in clinical research on AIDS. Linda Grinberg is gone. Many of our best activists also have died, moved on to more lucrative jobs in the medical education or pharmaceutical PR worlds, or just left AIDS altogether; yet the challenges we face continue to multiply. To people with AIDS, and people who care about AIDS, take this as a message in a bottle from someone on the far shores of AIDS treatment advocacy: "Please send help. We need it more than ever."
Gregg Gonsalves is the Director of Treatment & Prevention Advocacy at Gay Men's Health Crisis in New York (www.gmhc.org).
This article was provided by The Center for AIDS Information & Advocacy. It is a part of the publication Research Initiative/Treatment Action!. Visit CFA's website to find out more about their activities and publications.