The National Commission on AIDS in Retrospect

"I recognize that we are long on good intentions and short on authority. We have great power to proclaim and none to legislate. If we succeed, few will notice and fewer still will remember. But if we fail, we become just one more bureaucratic beast of burden braying in the beltway wilderness. This commission already has a record of outstanding service . . . I join you with a sense of humility at how much you’ve already achieved and how little I might add. What I do bring with me is a deep regard for public service and the personal conviction that could shape it. . . [A] commission such as this has a potential greater than legislation and a role more critical than budget drafting. We are the voice that must speak to the nation. We must speak thoughtfully, boldly, and consistently. We must keep the trust you have earned and earn trust where there is still suspicion. And we must speak recognizing that we speak for others. Who else will represent the hundreds of thousands of grieving loved ones if not we? Who else will take on the stigma and terror of nearly 200,000 HIV-positive Americans if not we? . . . We are named to be their voice, and if we are silenced, if we shade the truth for political or personal gain, if we lower our voices when we hear the distant thunder of a political storm, then we have failed not only at public policy but worse, at public trust. If we can speak convincingly to the soul of America, then we will be focusing on the issue at its deepest level . . . The calls to hatred and meanness have been heard too frequently and too recently for us to ignore. Dressed out in a language of religion and morality, they have espoused a position worthy of neither; and now is the time to join the issue because the signs are everywhere that the nation’s conscience is restless on this issue. Judgmentalism, though not dead, has lost its easy appeal. It does not swagger across American communities as it once did. Compassion, though not yet triumphant, has gained at least a toehold in places where once it was a stranger."

Mary Fisher, NCAIDS hearings on An Agenda for AIDS, November 17, 1982

What did the NCAIDS accomplish? First, it carried out the most wide-ranging study of the epidemic done to that time. As commissioner Larry Kessler noted at the group's last press conference (June 28, 1993), the NCAIDS reports constituted a veritable "Michelin Guide" to America's HIV epidemic. Did it break fresh ground or set new precedents for studying and responding to public health crises? The NCAIDS was the first such group to include as commissioners "non-experts" who were directly affected by the disease, and it encouraged such "community representation" for other advisory bodies (such as the NIH working groups.) It worked hard to include the voices that had been left out of earlier investigations, especially those from communities of color. The commission's work also reopened discussions about America's approach to drug misuse. Because the NCAIDS operated for four years, providing regular reports and public statements about their work, it helped keep HIV disease visible to both the public and to politicians and other leaders; likewise, it provided hope to those working on the front lines.

By keeping HIV/AIDS in the news and prodding political leaders, the NCAIDS members helped generate support for increased AIDS-related funding. Funding for HIV/AIDS research and health care services improved during the Clinton administration (1993-2001), which also attempted to develop universal health insurance. Prompted in part by the NCAIDS reports, President Clinton established the White House Office of National AIDS Policy in 1993 and appointed Kristine Gebbie as its first director. The 1993 NIH Revitalization Act gave the NIH Office of AIDS Research primary oversight of all NIH AIDS research and required all research agencies to expand involvement of women and minorities. In 1995, Clinton established the Presidential Advisory Council on HIV/AIDS and hosted the first White House Conference on HIV/AIDS. The following year, the Joint United Nations Programme on HIV/AIDS began operations. Congress funded the Minority AIDS Initiative in 1998 to improve HIV prevention and treatment in Black, Hispanic, and other minority communities. During the next several years global AIDS programs expanded, and HIV/AIDS appeared on the agendas of United Nations Security Council and Group of Eight (G8) Summit meetings. President George W. Bush created the President's Emergency Plan for AIDS Relief (PEPFAR) in 2003, budgeting $15 billion over five years to combat AIDS globally.

The biggest changes to the HIV epidemic were brought by new drug development. The first protease inhibitors were available by 1996, and others followed rapidly. These anti-retroviral medications, used in combination "cocktails," suppressed HIV replication so well that HIV infection increasingly became a manageable chronic disease rather than a death sentence. However, this was only true in countries where the new drugs were easily available; in places where health care infrastructure was minimal and governments were poor, as in many African countries, AIDS would continue to spread unchecked. Many of the global initiatives of the early 2000s aimed to make HIV drugs more accessible for everyone.

Despite these encouraging developments, former NCAIDS Chair June Osborn, writing about the AIDS epidemic in 1999, was still worried, and not optimistic. Globally, she said, many countries had responded to AIDS at first with denial, just as the U.S. had. While anti-retroviral therapy was a great advance, there were still issues of toxicity, viral resistance, demanding regimens, cost and access, and government funding. There had still been no serious efforts to reduce HIV transmission by providing drug addiction treatment on demand. And while many hoped for a HIV vaccine, Osborn noted that even should we have one, we wouldn't find much use for it, because the main at-risk group is adolescents--and in a culture where many parents didn't even want children to have sex education, it was unlikely that they would rush to vaccinate them against a sexually transmitted disease. (The human papilloma virus (HPV) vaccine, first licensed in the United States in 2006, demonstrated this point.)

Over twenty years later, anti-retroviral therapies can keep HIV levels so low as to be undetectable, allowing people with AIDS to live relatively normal lives. They remain healthy and, importantly, cannot transmit HIV to others. Anti-retroviral drugs can also prevent HIV infection if used immediately before or after exposure. Even so, as NIAIDS director Anthony Fauci has noted, uptake of treatment remains suboptimal, in both rich and poor communities. Control of HIV/AIDS is hampered by many of the same stubborn problems cited repeatedly by the NCAIDS, including lack of transport, substandard housing, mental health issues, substance abuse, drug toxicity, stigma and discrimination. In the ten years after AIDS first appeared, the epidemic—as disasters usually do—revealed our collective strengths and exposed our collective shortcomings. The work of the National Commission on AIDS elucidated those strengths and liabilities, and provided a blueprint for limiting the disease's impact, but the fundamental challenges posed by AIDS and other epidemic disease events remain.