OBSERVATIONS - september 13, 2007

Whatever Happened to the AIDS Epidemic?

How does your thinking about HIV/AIDS today compare with what you thought in 1987? This was the question Rebecca Haag, executive director of AIDS Action in Boston, put to an invitational meeting in New York earlier this summer. The meeting—convened at her request by the Wye River Group on Healthcare—brought together two dozen people, most with personal and professional backgrounds in HIV/AIDS care, others with policy and social marketing backgrounds.

My answer to Rebecca’s question—reflecting the naiveté of an economist who focuses primarily on health care financing and reimbursement issues—was illustrative of why such a meeting was necessary. I said that my understanding was that the AIDS epidemic had largely run its course in the United States, but that it was a continuing and growing problem in Africa.

I was half right: AIDS continues to be an overwhelming public health scourge in Africa, particularly in the southern half of the continent. But I had an overly optimistic view of the situation in the U.S., where the absence of AIDS on the front pages belies the true situation. Though not a disaster on the scale of southern Africa, the epidemic is far from over. The Centers for Disease Prevention and Control estimates that 40,000 people are newly infected with HIV each year in the U.S.—a number that has been stable over the past decade—and 17,000 die.

What’s different now is the face of the disease. Consider some data presented at the meeting:

• Women accounted for 8% of new AIDS diagnoses 20 years ago, but they now make up over one-quarter. Over 80% of newly diagnosed women are black or Hispanic.

• Men account for a smaller share of new infections, but those men are increasingly black or Hispanic (over 60%).

• The share of new AIDS cases accounted for by men who have sex with men is 2/3, but that
is down from 80% in 1987.

Do you find these numbers surprising? Perhaps not if you are a public health professional or a clinician who works with AIDS patients and people with HIV. But consider the last time you read a newspaper article about the epidemic—somehow it dropped off the public radar screen.

How can that be? I think three factors likely contribute. First is issue fatigue. The American public is unrivalled in responding charitably to specific events—the tsunami in Southeast Asia and Hurricane Katrina come to mind—but we have a hard time sustaining interest. Outrage wears off (remember homelessness?) and new events and issues intervene (9/11, Iraq, global warming). This doesn’t make us uncharitable—it just makes us human.

A second factor that has contributed to a decline in public attention is that HIV/AIDS is associated with things we don’t like to talk about in public: sex and intravenous drug use. Whether it is faith-based—recall the late Jerry Falwell’s description of AIDS as a punishment from god—or simply middle-class squeamishness, we don’t like to talk about how to make safer the acts that spread the disease and we don’t like to talk about the people who commit those acts.

Finally, HIV/AIDS continues to be an epidemic borne largely by people on the margins. But there is a difference now from 1987. Two decades ago, the fight against AIDS was led by people who may have been culturally marginalized but who were committed to change by seeing the devastation of the disease on a daily basis. Leaders in the gay and lesbian community had the education and financial resources to galvanize that commitment into action. Today, HIV/AIDS has diffused into a lower income, less-educated, less-visible community. As with other health care disparities, this population has less access to prevention, less access to diagnosis, and less access to treatment.

What stuck with me coming out of this meeting is that we’re no longer talking about a new disease whose transmission mechanisms are unknown and for which treatment is not yet available. Just the contrary: HIV/AIDS is both preventable and treatable. We know how not to get the virus, we know how not to transmit the virus, and we know how to combat the virus for those who are infected. What public discussion lacks is the energy and focus to put this terrible epidemic back on the policy agenda.

As part of our ongoing efforts to reduce health disparities, the Institute for Health Policy will look for ways to support people like Rebecca Haag and our Kaiser Permanente colleagues who treat HIV/AIDS.

Past Issues

Observations