AIDS Is Still Stigmatized
We stand at a critical time in the fight against HIV in California and the nation, particularly in view of the rates of HIV disease among women and people of color. New treatments have dramatically improved the health of thousands, but the success of the new medical therapies has created many new challenges.
Several years ago, AIDS case data provided a fairly accurate picture of the epidemic because, at that time, the vast majority of people infected with HIV progressed to an AIDS diagnosis within a certain period of time. New treatments, however, have changed this and now prevent many individuals who are living with HIV from developing AIDS. As a result, the snapshot we get of the epidemic using only AIDS data is increasingly blurred. In response to this problem, the federal Centers for Disease Control and Prevention released guidelines recommending that all states conduct HIV reporting.
Since the beginning of the AIDS epidemic, health officials have collected the names and other information on those diagnosed with AIDS, a common practice with communicable diseases. However, when the first test for HIV--the virus that causes AIDS--was developed, a consensus emerged that the stigma and discrimination associated with the disease would keep many from seeking HIV testing if names were recorded by the government.
In the past, the California Legislature has consistently and wisely opposed efforts to implement HIV reporting by name because it would likely deter those most at risk for HIV infection--people of color, gay and bisexual men, immigrants, and intravenous drug users--from seeking HIV testing and treatment. During the past two years, however, the Legislature has supported a proposed compromise to develop an HIV tracking system using confidential, unique codes instead of names. This is how California should now respond to the CDC guidelines. By creating a system that will give us a more accurate picture of the HIV epidemic, without creating fear among those living with HIV, California would obtain a better understanding of who is living with this disease and how to more effectively prevent its spread.
Opponents of the unique code system have argued that California should track HIV infections by name, claiming that it is easier, more accurate and mirrors other disease-tracking systems. They brush aside concerns that requiring an individual who tests positive for HIV to be reported by name to the government will keep many from getting tested. They minimize the very real stigma that continues to be associated with HIV and the ongoing fear of discrimination.
For the Latino and immigrant communities, such a law would have particularly negative public health consequences. Given the distrust of the government within the Latino community, as well as the fear that one’s HIV status could affect immigration status, HIV name reporting would be especially likely to deter this population from getting tested and treated.
Name-reporting advocates also argue that their plan would allow public health officials to identify and notify infected individuals’ sexual partners, who may have been exposed to HIV, and would also allow them to refer HIV-infected individuals to health care. However, a recent study by researchers at UC San Francisco found that HIV names-reporting did not produce such benefits.
The most recent measure to develop an HIV-tracking system using unique codes--AB 103 sponsored by Assemblywoman Carole Migden (D-San Francisco)--passed the Legislature in August. While Gov. Gray Davis vetoed the legislation, he has indicated his support, in principle, and has promised to implement the system once adequate funding is obtained.
For years, the CDC has provided states with added resources to enhance disease surveillance systems, and it recently has provided new funding to states that have implemented HIV-tracking systems. It is essential that the CDC, state Legislature and the Davis administration act quickly to secure the necessary resources to implement a non-name-based HIV reporting system. California policymakers must continue to support such an approach and should vigorously oppose efforts that would senselessly drive individuals away from HIV testing and care.
