After learning she was HIV-positive in 1991, Mary Fisher spent much of the 1990s on a high-profile campaign of AIDS activism. By 2000, she concluded that public advocacy alone couldn't change enough American minds and policies. To do that, she reasoned, "We need to make a difference in research and education."
So in spring 2000, she created the Mary Fisher Clinical AIDS Research and Education (CARE) Fund at the University of Alabama at Birmingham (UAB). The Fund's founding director was Dr. Michael Saag, a leading AIDS physician and researcher. Its founding principle was straightforward: "By blending research with advocacy, we
will press for a greater difference in policy, in treatment and in care."
Dr. Saag's pursuit of that principle has led him in recent years from the offices of the U.S. Capitol to the airwaves of NPR, from the National Institutes of Health (NIH) to The New York Times.
In 2006, as Congress debated reauthorizing the Ryan White CARE Act that funds HIV/AIDS patient care, Dr. Saag visited key House and Senate players in the debate. He shared a his recent study of HIV/AIDS care costs and its encouraging key finding: That the expensive drug regimen known as highly active antiretroviral therapy
(HAART) was actually cost-effective, because it kept HIV/AIDS patients healthier and their overall health care costs dramatically lower.
But Dr. Saag told policymakers the study also documented "a potential crisis": Physicians and clinics treating HIV/AIDS patients consistently are reimbursed for far less than they spend on care. Private clinics that can't cover such shortfalls are closing their doors; institutions such as UAB are so far shouldering the costs, hundreds of thousands of dollars annually. If the situation persists, Dr. Saag believes, it will leave patients without access to care and will drive doctors away from practicing AIDS medicine.
As he seeks policy solutions for the challenges in his clinical work, Dr. Saag draws praise and support for his research work. In late 2006, NIH made a $2.45 million grant to a project Dr. Saag heads: creation of an electronic network to pool treatment data from 15,000 patients at seven AIDS research centers nationwide.
To decide the best treatment for patients with HIV, doctors previously relied on clinical trials conducted on relatively few patients for a relatively short time. The new data system will provide essentially
clinical-trial-quality data on every patient in care, compiled longterm and available in real time, says Dr. Saag. And computers will be able to use the system's data to calculate which treatments have the greatest likelihood of success, based on what worked for other patients.
The New York Times predicted the data network "could be a valuable resource to researchers." Dr. Saag calls it "a new paradigm for clinical investigation — the first formal way to track HIV/AIDS treatments
and outcomes on a broad, comprehensive scale in realtime." He also says he hopes it serves as a model to create similar data networks for treating other diseases. |
Michael Saag, MD, has built his professional life on the premise that medical science, clinical care and public policy can — and should — enrich each other. While still in medical training, he conceived the plan for an HIV outpatient clinic that would do scientific research as well as patient care. He founded such a facility at UAB in 1988 and remains its director, as well as director of UAB's Center for AIDS Research.
Dr. Saag is on the NIH Office of AIDS Research Council, the Board of Directors of the Infectious Disease Society of America, and the International AIDS Society USA. He has published more than 200 peer-reviewed journal articles, has contributed more than 50 chapters to medical textbooks, and is senior editor of the journal AIDS Research and Human Retroviruses.
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