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20 years of struggle against HIV/AIDS

IN 1988, the World Health Organization designated Dec. 1 as World AIDS Day, and since then the first week of this month has been a time of special reflection on what this disease is doing to the human family. In the United States, lately, our thoughts have been somewhat confused. Since 1996, when a treatment breakthrough occurred with the introduction of "protease inhibitors," death rates have so dramatically declined that AIDS seems less urgent than before. There is still no vaccine, no cure, but "living with AIDS" has, thankfully, become the watchword.


In Boston, one of the most admirable AIDS organizations in the country, the AIDS Action Committee, is observing its 20th anniversary. The committee's founding director, Larry Kessler, recalls, "Few people under 40 know or remember just how rough those early days were, when a diagnosis of AIDS meant one could count on a series of opportunistic infections and a gradual and steady decline that was painful, lonely, and most often fatal." Since then, in part because of the work of groups like the AAC, the typical course of the disease has changed, but so has society.

That AIDS no longer generates a universal morbid dread, leading to panic and denial, is a good thing. Such responses made things worse. Gay men, in particular, were demonized. Yet gay men took the lead in responding with courage and hope. A culture of safer sex was created, together with a broad-based educational approach that changed behaviors and attitudes. That homosexuals have made such strides in demanding and receiving full civil rights in this society has been a byproduct of the forthright nobility that marked the gay community's response to the tragedy of what was first dubbed "gay pneumonia."

But changing attitudes and behaviors had political implications, as well as intimate ones. Effective advocacy in the public arena and in the world of health care led to breakthroughs in funding, in medical practice, and in levels of research. The disease moved along the fault lines of society, with marginalized groups particularly vulnerable. To respond to HIV/AIDS, soon enough, was to respond to broad structures of injustice.

As the narrow definitions of "risk group" were expanded, the stigmas attached not only to homosexuality and bisexuality, but to IV drug use, and even poverty, were themselves confronted as part of the problem. Moralizing gave way to empathy. A profound shift occurred not only in medical practice, but in thinking. And why shouldn't we have been encouraged?

But the grip of the insidious disease never let up. As dread decreased, so did vigilance about safer sex, and infection rates began to climb, especially among the young for whom the early traumas of AIDS were remote. Crucial public programs to provide needle-exchanges for addicts, a proven way to stem the spread of the virus, were not followed up on. And, especially in a time of tight budgets, funding for AIDS services, education, and research have all been cut.

The result is a new picture of HIV/AIDS in the United States that should obliterate complacency. Last week, the Centers for Disease Control and Prevention released figures that show that HIV infections climbed by more than 5 percent between 1999 and 2002, with the increase among Hispanics at 17 percent. More than 850,000 Americans have HIV, and every year that number grows by 40,000 -- many of whom do not know they are infected.

If the disease is proving so dogged here, why should we be surprised that it continues to devastate regions of the world that lack American resources? The mind blurs when the subject turns to AIDS in Africa, where the toll is impossible to grasp. Last week, UNICEF released a report that put the number of AIDS orphans in sub-Sahara at 11 million, a number expected to rise to 20 million by 2010 -- "the last will and testament" of a country's economic survival, as one UN official put it. The disease is on a global rampage.

Without resuming panic and morbid dread, can we return to our former urgency about AIDS?

Funding for treatment, education, and research, both at home and abroad, can simply not be regarded as one more line item on public budgets. Getting clean needles to IV drug users must be a public health priority. As Mayor Menino suggested last Friday, that means in Massachusetts legalizing over-the-counter purchase of syringes. The teaching of safer sex in schools, with condom availability, must be reinvigorated. Full funding of service agencies like the AIDS Action Committee must be restored. Research efforts toward a vaccine must be redoubled. And America's relationship to the world, especially Africa, should be defined by our readiness to commit wealth and knowledge to caring for the infected and protecting the uninfected. Twenty years on, the struggle against HIV/AIDS has just begun.

James Carroll's column appears regularly in the Globe.

1,000 volunteers dressed in red stand forming the bow symbol of the campaign against AIDS With the presidential palace of La Moneda at rear, 1,000 volunteers dressed in red stand forming the bow symbol of the campaign against AIDS, marking World AIDS day, in Santiago, Chile. (AP Photo)
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