HIV mandatory reporting debate heats up
To name or not to name?
An official recommendation from the Centers for Disease Control and Prevention urging states to report HIV infections to state health departments has renewed debate over the ongoing conflict between privacy and good medicine. Several influential groups, however, including the American Civil Liberties Union (ACLU) and the National Association for People With AIDS, strongly oppose HIV reporting.
While the CDC has kept a low profile in its push for HIV reporting (see AIDS Alert, November 1997, p. 121), the New England Journal of Medicine published an article in October in which John Ward, MD, chief of the CDC’s HIV/AIDS surveillance branch, and two co-authors recommend a national system for mandatory HIV reporting.
Currently, 29 states have mandatory HIV reporting, but they account for only about one-quarter of the nation’s infected population. In the past year, two high-prevalence states New Jersey and Florida have adopted HIV reporting by name.
Driving the push for mandatory HIV reporting is the diminishing stigma of HIV infection, and the growing imperative that patients receive treatment earlier in the course of their infection. The proposed HIV Prevention Act of 1997, drawn up by physician and congressman Tom Coburn (R-OK), also has forced the issue with its stipulation that physicians would be allowed to require HIV tests for patients before treating them. The bill is supported by the American Medical Association, but a national poll commissioned by AIDS Action Council showed that 61% oppose the bill and only 28% favor it. AIDS Action Council reports that Coburn will delay introducing the bill until next year.
The big debate among those who support mandatory HIV reporting is whether cases should be reported by name or by unique identifier, such as the last four digits of a Social Security number, gender, date of birth, and race. A coding system would allow health departments to track the epidemic without concerns that confidentiality would be breached. However, states that are experimenting with coded systems, such as Maryland and Texas, have had mixed results, says Patricia Fleming, PhD, chief of the CDC’s HIV/AIDS reporting. Not only is the system more costly than name reporting, it is harder to implement and appears to be less effective in tracking the epidemic, she says, adding that the results of the two states’ systems will be available early next year.
At that time, the CDC plans to issue recommendations on the issue of reporting by name or unique identifier. In the journal article, the authors point out that fears over confidentiality breaches are not reflected in the experience of using names for AIDS reporting, which has been mandatory for nearly 15 years. Confidentiality laws also have been strengthened with passage of the Americans With Disabilities Act, they note. CDC studies indicate that people avoid HIV testing because they don’t think they’re at risk or they don’t want to know their HIV status, but that a fear of name reporting is not among the major reasons, Fleming notes.
Such assurances don’t satisfy name reporting opponents. The strongest arguments against HIV reporting by name have come from the ACLU, which recently issued a 22-page report, titled HIV Surveillance and Name Reporting: A Public Health Case for Protecting Civil Liberties.
"HIV name reporting sacrifices privacy and jeopardizes public health," says Michael Adams, JD, staff attorney with the ACLU’s AIDS Project.
The ACLU report notes two recent federal appeals court rulings that placed limits on how far the ADA barred discrimination based on HIV status. One of the rulings, from the 4th Circuit U.S. Court of Appeals, held that HIV-positive people free of AIDS symptoms are not covered by ADA, the report adds.
The ACLU also cites strong evidence that name reporting pushes people away from seeking HIV testing. In one of nine studies cited, more than 60% of people tested anonymously reported that they would not have been tested if their name were reported.
"Proponents of aggressive HIV surveillance are shooting themselves in the foot by advocating name reporting, because doing so will shrink the pool of people who could get tested for HIV," Adams adds.
In a recent editorial, the New York Times supported the need for HIV reporting, but only if it were linked to anonymous coded identifiers and not to names. "This approach may be more costly to set up and manage, but it would ensure strict security of reported information," the editors conclude.
If the CDC recommends mandatory HIV reporting by name, it is possible that federal funding for HIV/AIDS surveillance would become contingent on having an HIV reporting system. Likewise, if the Coburn bill were passed, states that didn’t comply might face cuts in federal funding, Fleming notes.
[Editor’s note: For a copy of the 22-page ACLU report, call (800) 775-ACLU, or visit the ACLU’s Web site at www.aclu.org/issues/aids/namereport.html.]
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