ACLU Lauds Maryland's Alternative To Names-Based Tracking of HIV Cases

December 18, 1997 12:00 am

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NEW YORK — Responding to renewed calls for tracking HIV cases by name nationwide, the American Civil Liberties Union today released a highly anticipated report documenting Maryland’s success with using so-called unique identifiers in place of names to monitor the spread of the AIDS.

Beginning in June 1994, Maryland started tracking new HIV cases by assigning a random alpha-numeric code, or unique identifier, to each person who got tested. The state’s plan, only one of two in the country, was adopted because of strong fears that name reporting would discourage people from getting tested.

The ACLU report, The Maryland Lesson: Conducting Effective HIV Surveillance With Unique Identifiers concludes that a unique identifier system can provide a sound basis for HIV surveillance, and is a viable alternative to name reporting.

The report is likely to have national ramifications as the Centers for Disease Control considers new regulations that would require states to track all cases of HIV infection, possibly through name reporting.

But as the first comprehensive study on Maryland’s system of unique identifiers, the ACLU report calls into question the CDC’s continued resistance to an alternative to name reporting that would preserve confidentiality and provide accurate epidemiological data.

“This report shows that name reporting is not our only option,” said Michael Adams, staff attorney with the ACLU’s AIDS Project. “In light of Maryland’s successful experiment with unique identifiers, the CDC should heed the concern of AIDS advocates and stop promoting name reporting over unique identifiers.”

All states are now required to track AIDS cases, and 28 states now voluntarily track HIV cases through names. But states with the highest rates of HIV infections have refused to do so out of fear that people will be deterred from testing.

The report, which the ACLU plans to distribute to state and federal health officials nationwide, examines data compiled by the Maryland AIDS Administration, the state agency charged with tracking HIV cases. The data includes information on HIV-positive test results submitted to state laboratories from June 1994 to December 1996, the last month information is available.

The report looked at the two main criterions for determining if an HIV reporting system is viable: “completeness rate” (percentage of cases reported with all necessary information) and “match rate” (how well the system corresponds to the state AIDS registry, a list of all reported full-blown AIDS cases.)

During the last five months of 1996, the report found that Maryland’s system rose to a completeness rate of 77 percent, a figure that public health officials say is sufficient for the goals of HIV surveillance. State AIDS officials believe that with proper training, that figure will exceed 80 percent.

The system achieved a match rate of 76.5 percent, which AIDS officials say fares competitively with CDC data from states with HIV name reporting. For instance Alabama and Arizona, states with far fewer cases of HIV and AIDS — and therefore considered easier to track new cases — had match rates between 79 to 90 percent.

The ACLU also noted that the CDC has refused to provide any funding to support unique identifier systems in Maryland and Texas, the other states with such programs, but has provided funding for HIV name reporting in other states.

Dr. Liza Solomon, Director of the Maryland’s AIDS agency, said in an interview with the ACLU that the unique identifier system satisfies the state’s epidemiological requirements and enables the state to effectively plan services, prevention activities and target programs. “We have no plans to change to a names-based system,” she said.

Today’s report on Maryland bolsters an earlier paper issued by the ACLU’s AIDS Project on the broader question of HIV surveillance and name reporting. That report — HIV Surveillance and Name Reporting: A Public Health Case for Protecting Civil Liberties — was issued on Oct. 16. It concluded from a careful study of all available research that name reporting would sacrifice privacy while undermining public health goals.

Both papers were prompted by recent concerns that changes in the HIV epidemic required more aggressive methods for tracking HIV. Specifically, the emergence of promising new medical treatments, coupled with improved legal protections for people with HIV, have led some to argue for monitoring and reporting all cases of HIV infection.

But after examining the issue more closely, the ACLU countered that while better HIV surveillance may be needed, that goal should not be accomplished through name reporting, since such a plan would turn people away from getting tested in the first place. Instead, the ACLU advocates a unique identifier system that allows health officials to track the progression of the epidemic, and encourages the public to find out their HIV status.

“The lesson from Maryland is simple,” Adams said. “Public health officials are faced with two choices in adopting an HIV case reporting system. With name reporting, they risk scaring away those who most need to be tested. With unique identifiers, they will get the information they need without driving people with HIV underground.”

The Maryland report can be found here

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