AIDS: HIV Names Reporting Policy Examined
An article on the front page of today's New York Times reports that while many states only keep records of people who have full-blown AIDS, in 1991 New Jersey became one of the few states to "establish a register of people who are not necessarily ill, but who have [HIV]." Other states currently grapple over the administration of HIV reporting systems, but New Jersey's HIV list offers "a valuable lesson for other states: there have been no breaches of confidentiality; other perils that critics warn about have not come to pass and the benefits have been abundant." Ed Martone, executive director of the New Jersey of the American Civil Liberties Union, said, "In all candor, some of the worst-case scenarios that we anticipated did not occur. I have not heard of any inappropriate releasing of names, purposely or accidentally, so it seems to be working at this point." In addition, the Times notes that New Jersey residents can sue under the state's confidentiality law if their "HIV records are disclosed improperly."
Public health officials call New Jersey a "textbook case" of the usefulness of HIV reporting. The policy allowed it the state identify 1,308 HIV-positive women with newborn babies, enabling a significant reduction in the rate of infant HIV infection by administering AZT to the newborns. An AIDS-only list would only identified 24 mothers, officials say. Having the names of HIV-positive people also enabled New Jersey "to quickly identify older people and young women as groups that needed special prevention and medical programs." State health workers are now "beginning a $150,000-a-year prevention program" targeting women in their 20s. In addition, the list alerted the state that HIV/AIDS will be soon be a problem among the elderly population.
Smell the Coffee
Health officials in other states are starting to take note of these successes. Dr. Richard Sun, head of California Department of Health's HIV/AIDS epidemiology division, said, "We would be able to do things earlier if we had HIV reporting. AIDS reporting reflects infections that happened perhaps 10 years ago." Sun added "that is would be difficult to make plans for HIV prevention and care past the year 2000 with only AIDS data, and not HIV statistics also." Other health officials agree that the "benefits" of HIV reporting "are concrete" and that "the need for reporting has become more crucial with the advent of new treatments" that allow "more people to stay in good health even if they have HIV."
Despite the benefits, many AIDS advocates "are vehemently opposed to name reporting, arguing that confidentiality concerns are far too important and that codes should be used instead to further safeguard privacy." Opponents of name-based HIV reporting contend it will discourage people from testing, and maintain that there is always a chance that health workers would misuse the data. But while officials concede "that at least 20,000 HIV-positive people have not come forward to be tested," they speculate that this is more a result of ignorance than fear that their condition might be made public. And officials say there is a slight chance that name reporting "can lead to increased pressure, even intimidation, on clinics and counselors to get the names of sexual and needle-sharing contacts."
Some States At An Impasse
Many states -- including New York and California, which have the highest numbers of AIDS cases in the country -- "are still locked in disagreements over how HIV reporting should be done and how the information will be used." The AIDS Advisory Council in New York, a state that houses the "powerhouse advocacy group" Gay Men's Health Crisis, is "bitterly divided" on the issue of coded versus name-based HIV reporting. The Times reports the issue may have to be resolved by measures currently pending in the New York Legislature. "California is at a similar impasse," the Times reports. Earlier this year Massachusetts adopted a coded system, and after four years of a coded system Texas is moving to name-based reporting. Today, 28 states have name-based systems, but the Times reports that these states only account for 30% of the nation's AIDS cases. "New York and California are the two biggest states that don't have HIV reporting, and it would make a huge difference politically and from a public health perspective" if they were to implement policies, said Lawrence Gostin, director of the Georgetown University/Johns Hopkins University Program on Law and Public Health. Centers for Disease Control and Prevention officials have reached the conclusion that "coded systems are unreliable and difficult to link with individuals"; the CDC plans to issue reporting guidelines for states in a few months (Richardson, 5/29). Click here for more Daily Kaiser HIV/AIDS Report coverage of the name-based reporting debate.