October 01, 2004

Introduction: AIDS and the Law—Then and Now

In 1987, the nation’s response to the still new and mysterious AIDS epidemic owed more to hysteria than to reasoned analysis. It was clear that the situation would not change without the addition of a strong, rational, and dispassionate voice to the public conversation surrounding these issues. Thus the Board of Governors of the American Bar Association (ABA), at the request of the Section of Individual Rights and Responsibilities (IRR), established the ABA AIDS Coordinating Committee in August 1987.

The Committee’s charge was to coordinate the ABA’s ongoing AIDS-related activities, act as a catalyst to stimulate new activities, and identify issues for law reform and policy development. Committee leaders thought its most pressing task should be the development of a set of legal and policy recommendations grounded in scientific evidence and recognized legal principles. President Robert MacCrate and Section Chair William L. Robinson invited broad participation from ABA entities and related organizations, fifteen of which sent liaisons to serve on the Committee. The Board asked the Committee to report back as soon as possible.

When the Committee began its work in January 1988, its members recognized the difficulty and importance of their mandate. But they also clearly expected that the Committee’s—indeed the nation’s—work with respect to the AIDS epidemic could be accomplished within a reasonably foreseeable period of time. Few who were present at that time would have predicted that the Committee and its related staff support component, the AIDS Coordination Project, would be equally active and engaged in equally important work seventeen years later.

The Early Years

Although overwhelming evidence had convinced the scientific community that HIV was transmitted only in very limited circumstances—through unprotected sex, blood transfusions, needle sharing, the birth process, and breast-feeding—many people refused to believe that the danger of transmission was limited to those areas. Indeed, the U.S. Centers for Disease Control and Prevention (CDC) had emphatically stated that HIV could not be transmitted through casual contact, yet parents called for the segregation of school children with HIV; court officials sometimes wore “space suits” when dealing with prisoners with HIV; and employers fired HIV-positive employees who were fully capable of doing their jobs. Many people with HIV also found it difficult to find lawyers willing to represent them.

Due to widespread discrimination, many at higher risk of HIV infection did not want to be tested, notwithstanding the potential health benefits to themselves and others resulting from accurate knowledge of their HIV status. They feared possible disclosure, knowing that tests create results and that results become records. On the other hand, given the fear evoked by AIDS, many members of the public (and many public officials) demanded that people be tested—and that the results of those tests be published generally.

The Committee recognized that the objective of the law should be to balance these apparently conflicting individual and community interests. But it also recognized that the interests should be balanced in light of the scientific evidence, which showed that the potential risk of exposure in most cases was negligible and certainly was not “significant” as the U.S. Supreme Court had explained that term in School Board of Nassau County v. Arline, 480 U.S. 273 (1987). The Committee recognized further that legal policy should be aimed at encouraging resolution of these issues through education, voluntary testing, and confidential counseling and treatment rather than through mandatory or forced testing, posting, or other punitive preventive measures. What was needed was a policy that worked.

Between January and June 1988, the Committee researched, drafted, and published a 250-page volume entitled AIDS: The Legal Issues, which identified and analyzed major issues engendered by the AIDS pandemic in fifteen areas of the law. In August 1988, at the ABA Annual Meeting in Toronto, the Committee presented an all-day educational program and distributed the book widely. A year later, with cosponsorship from numerous ABA Sections and Divisions, the Committee presented a series of sixty-one policy principles drawn from these fifteen areas of law to the ABA House of Delegates, which adopted them all.

The Committee’s Work Today

Since then, the Committee has continued to address legal concerns engendered by the pandemic, including treatment and prevention, privacy and confidentiality, stigma and discrimination, and employment and health insurance. It has produced numerous informational reports and other educational resources, among them a manual, Creating a Pro Bono Project for People with AIDS & HIV; a promotional video for lawyers, Pro Bono in the AIDS Epidemic; a Directory of Legal Resources for People with HIV/AIDS; a white paper on AIDS in healthcare settings; and Perspectives on Returning to Work: Changing Legal Issues and the HIV/AIDS Epidemic, a report for both lawyers and laypeople on the myriad legal issues confronting people with HIV/AIDS who seek to return to the workforce. The Committee also has convened meetings and conferences of experts and advocates to explore HIV/AIDS-related law, policy, and practice issues in depth.

This educational function has advanced the Committee’s policy initiatives as well, particularly its controversial proposal supporting needle exchange programs. After learning of the plan, the ABA Standing Committee on Substance Abuse expressed concern that needle exchange programs would “send the wrong message” about drug abuse and efforts to combat it. Many ABA leaders and members also found the proposal counterintuitive. The AIDS Committee, while fostering constructive interaction with the Standing Committee, presented two conclusions from respected scientific literature: (1) that needle exchange programs cut HIV transmission without contributing to increased drug usage and (2) that properly organized needle exchange programs assisted in getting the hardest-to-reach drug users into counseling and treatment.

The resulting policy compromise both reaffirmed the ABA’s “long-standing opposition to substance abuse” and supported the “removal of legal barriers to the establishment and operation of approved needle exchange programs that include a component of drug counseling and drug treatment referrals.” The AIDS Committee followed the policy’s adoption with an informational report entitled Deregulation of Hypodermic Needles and Syringes as a Public Health Measure: A Report on Emerging Policy and Law in the United States (2001).

In February 2004 the House of Delegates adopted a Committee-sponsored policy of much broader scope.

RESOLVED, That the American Bar Association urges the Government of the United States to implement legislation, policies, programs, and international agreements that address or are relevant to the HIV/AIDS epidemic in a manner consistent with international human rights law and science-based prevention, care, support and treatment objectives.

The Committee now is developing projects to effectuate this policy. One initiative proposes the formation of a Committee-like entity in Russia to help lawyers and policy advocates there develop and implement legal approaches that address the nation’s exploding HIV epidemic. Another project would expand HIV legal checkup programs, through which doctors refer people newly diagnosed with HIV to legal clinics for comprehensive advice to protect their rights.

The policy encompasses numerous other legal concerns that will continue to receive the Committee’s sustained attention in the future. The articles in this issue of Human Rights address many of these concerns in sober, enlightening detail. The Committee thanks the authors for their expertise and insights and looks forward to working with them further in the fight against HIV/AIDS.