May 7, 1999

With fingers crossed, clinicians, public health officials, and people infected with HIV are hoping that AIDS is in on its way to becoming a chronic but manageable illness. But in 1989, when APA decided to establish the Commission on AIDS, a person who learned he had AIDS (it was rarely a she back then) had little to prepare for except a not-too-distant and usually unpleasant death.

More than 62,000 people had died in the U.S. in the eight years between the New York Times's startling account of a "rare and often rapidly fatal form of cancer" striking a few dozen gay men in New York and San Francisco and the commission's founding. In 1989, the year the commission was appointed, nearly 28,000 more would die from the disease, and by last June more than 400,000 Americans had died.

Now about to commemorate a decade of educating and training psychiatrists and other clinicians in the behavioral and neuropsychiatric aspects of HIV disease, in 1989 the commission represented APA's heightened commitment to using its members' expertise to play a role in combating the fast-spreading epidemic. At the time this was an area into which few physicians or mental health professionals had chosen to delve.

From 1983 to 1989, APA had relied on a task force and ad hoc committee to help it craft its response to the AIDS epidemic. The Board of Trustees and a cadre of other psychiatrists, many of whom had sizable caseloads of gay men in their practices, agreed that APA needed to escalate its involvement through a longer-term commitment and higher-profile component, and this led directly to the commission's formation. APA realized that neuropsychiatric complications were a critical part of the illnesses endured by many HIV-infected persons. It also acknowledged that it had valuable expertise it could lend as decisions were made about public policy and other issues on which mental health consequences needed to be considered.

James Krajeski, M.D., who chaired the commission for one year beginning in 1990, noted that at the time the commission was beginning its work, "many of us were concerned that psychiatry was marginalized in the battle against HIV. In many cities it seemed that psychologists were more involved in the public policy arena and other areas. It was clear, however, that the HIV manifested itself not only in psychological terms, but particularly in its effect on the brain, which made it a disease that psychiatrists had the unique skills and training to treat."

In its earliest years the commission grappled with such issues as mandatory name reporting, contact tracing, physicians who were HIV positive, and the risks of occupational exposure to the virus. While these concerns did not always fall within a strict definition of the mental health field, how policymakers would eventually resolve them had a substantial impact on the mental well-being of the people affected.

"We were facing the challenge of bringing the concerns of a marginalized minority group-gay men-to the attention of mainstream psychiatry," said Krajeski, who is now editor in chief of Psychiatric News. "But compared with AIDS-related efforts of other medical organizations, APA seemed light years ahead in its support of policies that were enlightened and effective."

During its first year, the commission developed the APA Position Statement on HIV Infection, which committed APA to "participate actively in public education to counteract inappropriate reactions to HIV infection." It also affirmed APA's belief in the need to maintain testing and treatment confidentiality and the "obligation of psychiatrists to provide professional care in a competent and compassionate manner."

"I have never seen a group that worked so hard, so fast," emphasized Stuart Nichols, M.D., the commission's first chair. "The members quickly formed a strong bond, and considering how overwhelming the issues were, we started expecting more and more of ourselves."

Through the commission, APA led the way in addressing AIDS-related issues to an extent no other medical or professional group could match, Nichols said.

In its first few years commission members prepared the Position Statement on HIV and Discrimination emphasizing APA's stance that HIV infection must not be the basis of any form of discrimination, approved by the Board in December 1991. This was soon followed by a development of the Position Statement on Confidentiality, Disclosure, and Protection of Others, approved by the Board in December 1992. This statement addressed such hot-button issues as contact tracing and obligation to protect persons vulnerable to infection due to the high-risk behaviors of others.

By 1992, the first year Boston psychiatrist Marshall Forstein, M.D., served as commission chair, its members were growing increasingly concerned that an inadequate number of psychiatrists were involved in treating HIV-related neuropsychiatric illnesses. This concern, Forstein said, triggered a still-ongoing initiative to develop training programs primarily for psychiatrists that deal with behavioral and neuropsychiatric aspects of HIV disease. It also led the commission to adopt a multilevel approach to its mission, he explained, that added education, training, and liaison-building activities to its role as a policy advisor to APA leadership.

In conjunction with the APA AIDS Education Project and AIDS Program Office, the commission led the development of a highly regarded training curriculum that concentrates on HIV-related neuropsychiatric complications and treatments for them. A recent expansion tailored these curricula to psychiatry residents, many of whom had complained of receiving inadequate preparation for treating HIV-infected patients, and to minority populations.

By 1993 commission members began to be troubled by the realization "that psychiatrists were not thought of as a mainline part of the mental health team in the epidemic," Forstein told Psychiatric News. At that time it began to develop relationships with federal agencies involved with the AIDS epidemic including the National Institute of Mental Health and the Health Resources and Services Administration, in addition to expanding its involvement with the CMHS, which funded most of the training activities. Its goal was to ensure that psychiatrists were named to task forces and work groups addressing any mental health aspect of AIDS or HIV infection.

The commission and the AIDS Program Office, under Director Carol Svoboda, have modified and updated their training curricula and other outreach efforts as the epidemic has undergone a dramatic transformation. "In the last few years, people have become more hopeful" about AIDS treatments and the future of the epidemic, Forstein noted.

The success of a "cocktail" of HIV-fighting drugs in extending longevity for some persons with AIDS, while clearly a dramatic breakthrough, "has also engendered a false sense of optimism," he warned. Many people now think that these drugs are a panacea, while in fact they come with serious side effects, require a strict regimen that many find too rigorous to adhere to, and do not work for all infected people.

"Now psychiatrists find themselves dealing with treatment compliance issues," he said, and patients who find it difficult to make the hard choices that come with the realization that they have to find a way to live with AIDS rather than come to grips with dying from it.

Particularly troubling is complacency that has caused many young people to resume behaviors that will put them at risk of infection. "They are under the misconception that the epidemic is over," he explained. Thus, "it is more important now than ever before that psychiatrists be involved."

The commission's experience shows that there is "clearly a hunger for knowledge" about HIV disease among psychiatrists, he added, which is why commission members and staff of the AIDS Program Office conduct training and education updates at APA's annual meeting and Institute on Psychiatric Services each year.

About 150 psychiatrists now provide training through APA's AIDS efforts, noted Svoboda. A much larger database lists nearly 2,000 APA members who are involved in psychiatric aspects of HIV treatment.

Despite all the hours commission members, consultants, and staff devote to training, education, and policy development, "we are always facing the frustration that we are still not doing enough-that in fact we never could do enough," said Forstein, who still chairs the Commission on AIDS. "Unfortunately, resources are too limited for us to fulfill all our goals and dreams," he stated. Money from the CMHS grants has declined with each renewal, and HIV efforts are not near the top of the many priorities competing for APA's limited funds.

The future will see the commission continue its "multitask approach" of educating APA members, enhancing its role as the main advocacy group for HIV-infected individuals with mental or substance abuse disorders, and regularly updating the training curricula, Forstein said. Commission members are also deeply involved in helping to develop practice guidelines for psychiatric treatment of HIV disease, which will be an addition to APA's growing series of practice guidelines for psychiatry.