People feared not just their names being reported to the health department but also the potential impact of the inclusion—and release—of their HIV status in their medical records. “People were afraid to get tested because they were afraid they would lose their life and their livelihood, that they would be treated differently,” notes Jane Silver, first director of AIDS programs for the Department of Health in Washington, DC. Noting the potential positive impact of more widespread acceptance of testing, the IOM noted that “fear of discrimination is a major constraint to the wide acceptance of many potentially effective public health measures.”10
One broadly embraced public health strategy was anonymous HIV testing: allowing people to get tested by simply providing an easy-to-remember pseudonym to use for accessing their results when they were available. Some evidence shows that the availability of anonymous testing (and, presumably, release from the fear of any possible disclosure of identity) can increase the number of people who seek testing and can encourage testing of more people who are at high risk of infection.
Confidentiality in the Ryan White Legislation
The original Ryan White Comprehensive AIDS Resources Emergency (CARE) Act passed by Congress in 1990 (Public Law 101–381, 104 Stat. 576) reflected the debates about HIV testing and names reporting. The confidentiality provisions it included were applicable almost solely to the section of the bill related to early intervention services. They focused on protecting information about people who accessed services while making sure those who were tested for HIV knew if and how their test results would be reported and ensuring that providers had the option of providing the test anonymously (see box, Confidentiality Provisions in the Ryan White HIV/AIDS Program Legislation.)
At the time the legislation was drafted, AZT (zidovudine) had been approved to treat HIV, and treatments were also available for HIV-related opportunistic infections. The treatments were affirmative reasons for people to be tested for HIV; if positive, they could monitor their health and get treatment when appropriate. At the same time, health care systems were already buckling under the weight of those who had full-blown AIDS. Given the widespread fears about the confidentiality of HIV test results, the push for HIV testing was not a priority among AIDS advocates or most service providers.
Representative Henry Waxman, a leader on HIV issues in the U.S. House of Representatives, believed firmly in the need for early intervention and had previously pursued legislation to support counseling and testing, confidentiality, and nondiscrimination protections. Waxman understood that to encourage people to get tested, they would have to be assured that nothing bad would happen as a result of the test. The public health community had advised that successful early intervention would require taking away barriers by ensuring confidentiality of medical records and protection from discrimination.
Waxman’s original efforts to include an early intervention program in the Health Omnibus Programs Extension (HOPE) Act of 1988 (Public Law 100–607) were unsuccessful because not enough of his colleagues were willing to support the antidiscrimination protections; without those protections, Waxman would not proceed.11 Waxman resurrected his efforts for early intervention programs as part of the legislation that would become the Ryan White CARE Act, and ultimately, early intervention services became Title III (now Part C). It was within this context that debates over HIV testing played out on the Hill.