Some view the success of new AIDS treatments as the end of an epidemic. The fight is far from over, but have AIDS ralliers gone home?
By Jessica Scully
Terri seemed a success story for combination drug therapy. Diagnosed with HIV in 1992, the 46-year-old recovering drug addict began treatment about two years ago.
For the first year, the drugs seemed miraculous. Terri felt energetic, her appetite returned and she was gaining back the weight she had lost. The virus was virtually undetectable in her blood.
But suddenly, everything went terribly wrong.
Terri slipped into a coma. Later, when she came to, doctors discovered she had a severe case of pneumonia. That was several months ago and Terri has continued to have problems. Weak and constantly tired, she often can't sleep because her body aches.
"It seems I can never enjoy life," Terri said. "I'm always sick. I just want to find the right med [so] I can go on and live a normal life."
Waiting in the wings
For many people like Terri, the development of new drugs and new treatments could mean the difference between life and death.
Five years after the FDA approved the first of the protease inhibitors, data about the long-term effectiveness and effects of such treatments is just becoming available. And according to recent studies, the long-term results are not as promising as many had hoped.
Protease inhibitors can fail up to half the patients taking them, a 1999 San Francisco study indicated. While some argue that it is hard to define failure with HIV and AIDS, everyone agrees that the new drugs aren't a panacea.
Beyond the severe side effects and the complicated and expensive drug regimens, studies now suggest that long-term treatment with anti-retrovirals may predispose people to life-threatening illnesses, including diabetes, heart disease and osteoporosis.
While they did manage to lift many people from their deathbeds, the "miracle" drugs have turned out less than miraculous.
The search continues
The clinical trials that take place in university and community-based centers are key to the development of new drugs. Lately, however, researchers have been struggling to get the funding they need.
Since word spread about the success of new AIDS treatments in the late nineties, private donations for research are down, and scientists question how well they will be able to continue their work to find new, better treatments and eventually a cure.
According to the director of one center, trials at the community level may soon be at an end.
"There is a perception that, because we have these cocktail drugs, that HIV is under control,'' said Michael Edell, executive director of the AIDS Community Research Consortium in Redwood City, California. "It's treatable, it's manageable, and some are viewing it as cured. Which, in truth, is anything but the case.'' With spending down, small community centers are often the hardest hit. "You're literally depending on donations to stay alive," Edell said.
And while those who have been directly affected by AIDS remain committed to fundraising, "There is a section of society that is sort of a disease-of-the-month club."
Fundraising: the life's blood of research
As some HIV/AIDS research organizations struggle to stay afloat, donations to fight other high-profile diseases keep rolling in.
The American Cancer Society has seen a steady increase in public support, from $382 million in 1995 to about $620 million in 1999. The American Diabetes Association has seen a similar increase from $62 million in public support in 1995 to approximately $114 million in 1999.
AIDS organizations, on the other hand, don't have the giant budgets of their peers. The American Foundation for AIDS Research, the largest foundation in the country that provides money for research for the disease, took in a total of $19.1 million in 1999.
The amount of money the organization has received from the public has declined steadily since the early 1990s.
In 1993, two years before the arrival of protease inhibitors, the organization got $16.94 million from the public, plus $4.92 million from special events.
But in 1999, just $8.97 million of the organization's budget came from donations, with $4.96 million from special events.
But, not every AIDS organization is struggling for money. In San Francisco, arguably the hub of AIDS advocacy, several groups, including Project Inform and the San Francisco AIDS Foundation, said their donations have remained steady.
And not everyone thinks the amount of federal funds dedicated to AIDS research is a problem.
Dr. John Bartlett, director of the Division of Infectious Diseases at Johns Hopkins University School of Medicine, said that over the past five years the total amount in grants given by the National Institutes of Health has remained steady. The epidemic has also stabilized, Bartlett said.
"The thought that it [funding] ought to just always continue to increase is probably not fair to other diseases," Bartlett added.
As private donations decline while the number of people living with AIDS continues to rise, some researchers and activists worry about who will keep AIDS in the spotlight in the future.
The early activists came from the gay community because it was so decimated by the disease, explained Dr. Margaret Fischl, director of the Comprehensive AIDS Program at the University of Miami School of Medicine, and AIDS researcher since 1982.
"It was such a struggle, such a stigmatizing disease, that it was very hard to get the community involved," Fischl said. "People devoted their lives to fundraising, and I think they burned out."
Burnout isn't the only factor in the dwindling number of activists. Many groups, including the American Foundation for AIDS Research, have been hard-hit by staff member deaths.
Since Jerome J. Radwin, the foundation's CEO, arrived in 1989, six visionary staff members have died. "It has a significant impact on an organization when, every few years, a key member of your staff dies," Radwin said.
Kevin Robert Frost, the organization's vice president of clinical research and prevention programs and an activist since the late 1980s, is worried about the future.
"There are fewer people around with the historical background and the intellectual capital to advance the fight," he said.
"I'm a gay man, and that has certainly been my guiding light. There was no way I could watch this epidemic ravage my community and not be involved."
When Frost first became active, there were many groups dedicated to fostering new leaders, he said. But now those organizations are dwindling.
From where will the new activists come?
"I just don't know," Frost said.
People like Terri can only hope the money and the leaders appear. "I thank God every day, because it could be worse than this," Terri said. "I'm just hoping some day I won't have to go through all this."
Jessica Scully is a San Francisco-based reporter and freelance writer. If you have questions or comments, she can be reached at email@example.com.
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