Consider the issue of universal health care. At the local, state and national levels, dozens of groups are steadily working to provide more Americans with access to affordable health care. The cost of health care is such an enormous problem that it would garner a spot on the American political landscape even if there had been no AIDS epidemic. But what savvy AIDS activists have done is add some very loud voices to the growing demands that the U.S. health care system heal itself.
Chuck Bell of Consumer's Union, the non-profit publisher of ConsumerReports, gives high marks to the AIDS activists who have added their muscle to the push for health care reform. He calls attention to developments in New York state, where a strong consumer coalition has worked for changes that have earned the state a reputation as a leader in health care reform.
"AIDS activists have played an integral role in the coalition," Bell says. "They bring a wealth of knowledge and expertise from their involvement in other policy issues. They have a sense of what's possible, and what types of pressure need to be brought to bear."
Similar dynamics are impacting the issue of making medicine more affordable. A recent issue of Time magazine contained a six-page series of stories about growing consumer resistance to the high cost of pharmaceutical drugs. A dramatic full-page photo showed a woman angrily waving a bag of prescription drug bottles at a recent demonstration at U.S. House Speaker Dennis Hastert's Illinois office. AIDS wasn't mentioned once in the article, but anyone familiar with AIDS activism is well aware of its place in this battle.
A related issue is the inability of developing nations to pay the high cost of drugs that are only available from U.S. manufacturers because those manufacturers hold the patents. AIDS activists pushed this issue to the forefront several months ago by dogging Vice President Al Gore on the campaign trail. Their specific charge was that he was helping the U.S. bully AIDS-ravaged South Africa out of producing or procuring its own more affordable versions of AIDS drugs.
Two years ago, citing humanitarian reasons, the South African government had passed legislation that would provide an end-run around U.S. patents. But this end-run was stalled by the U.S. government, which sided with aggrieved American drug manufacturers -- with Gore playing a key role in a diplomatic show of force intended to persuade South Africa to back down.
Enter the American AIDS activists, whose highly visible protests of Gore's position led to coverage in the Washington Post, The New York Times, and Newsweek. Last September, AIDS activists won a significant victory when the U.S. and South Africa reached a compromise that enabled South Africa to work on more specific legislation.
South Africa's plan to produce drugs is still in limbo as the complicated international trade negotiations drag on. However, the efforts of the AIDS activists have sent a clear message to the U.S. government: it cannot put corporate profit above humanitarian need without facing the possibility of being publicly called on the carpet by its own citizenry. While the current struggle is specifically about AIDS drugs, the implications are far-reaching. AIDS activists are, in effect, calling for the United States to be a more altruistic member of the world community -- to put saving lives ahead of making money. If this precedent is clearly set in the AIDS arena, it might have a positive impact on how world powers deal with developing countries on a wide range of issues.
The grassroots response to AIDS has also provided a model for Americans dealing with other types of health problems. The most striking example is breast cancer activism. In the last decade, breast cancer activists have pushed for and won significant increases in federal funding for research, as well as greatly increasing awareness about the benefits of early detection. To say that AIDS activism made this possible would be an overstatement, as well as a discredit to other sources of inspiration for the breast cancer movement, such as the women's health movement of the early 1970s. But it's obvious that AIDS activism has been an important factor.
Dr. Steven Miles of the University of California-Los Angeles AIDS Institute, who has been treating people with AIDS and HIV since his residency in the early years of the epidemic, observes, "Initially there was much more rancor in AIDS activism -- people were doing things like going into [pharmaceutical companies] and spilling pigs' blood. The companies said, 'Come be a part of the process.' The AIDS activists won themselves a place at the table. After that, other groups became more emboldened."
Even the language that the HIV/AIDS community uses may be providing a model for others. Miles points out that the common convention of PWAs (People With AIDS) to talk about how many years they have been "living with AIDS," in other words, casting the struggle in less negative terms than they would if they talked about how long they had been ill, has a significant parallel. It's not uncommon for women stricken with breast cancer to identify themselves as "breast cancer survivors," he observes, and for those who regain good health to mark the number of years that they have been free of cancer.
This phenomenon is part of the larger issue of how people with certain health care needs define themselves and their relationship to health care providers. Again, people with AIDS and HIV are setting a great example. HIV-positive people's efforts to educate themselves about their options and to make their own decisions, instead of blindly following doctors' orders, have taken the concept of "patient empowerment" to a whole new level, changing how people with other kinds of needs relate to health care providers. While this trend has been slow to spread, it is definitely becoming more noticeable in other disease fields, particularly cancer.
Furthermore, the American psyche has long harbored a bugaboo that is finally being addressed more directly in the face of the AIDS epidemic: sexuality. There are still far too few discussions about how to have physically and emotionally healthy sex, but AIDS has compelled some people to try harder than they did before. "The epidemic has brought sexuality out of the closet," says Mark Hannay of ACT UP (AIDS Coalition to Unlease Power) New York. While contemporary candor about sexuality has its roots in the sexual revolution of the 1960s, Hannay suggests that the emergence of AIDS has led to new health-related developments such as "a much franker discussion about substance abuse and sexuality."
U.C.L.A.'s Miles agrees that AIDS has contributed to more open discussions about once-taboo issues. He believes that there's a connection between the AIDS epidemic and a growing trend that he sees in the cancer field. "People are beginning to discuss sexual functioning post-mastectomy or post-prostectomy with their doctors," he says. "Physicians fully expect patients to ask about this now."
Developments in the AIDS community have also had an impact on some more general health care issues, such as preventive care. People with AIDS and HIV are helping to call attention to the concept of maintaining wellness, instead of only seeking health care when illness occurs. Ditto the concept of holistic health care -- addressing a person's medical needs in the context of that person's emotional makeup and socioeconomic status.
These are only some of the possible beneficial outcomes of our experiences in the AIDS epidemic. We won't be able to fully comprehend what we have accomplished until we have gained the perspective that comes with time.