D.C., Md. Face Cut In AIDS Funding

By David Brown
Washington Post Staff Writer
Monday, March 13, 2006

The District of Columbia and Maryland may lose millions of dollars in federal AIDS grants if they do not agree to have local health departments collect and record the names of people with newly diagnosed HIV infection.

The two jurisdictions are among about a dozen in the country that collect data about new HIV cases using coded identities, not names -- a strategy adopted two decades ago when HIV infection was untreatable and highly stigmatizing.

Many jurisdictions have since switched from "code-based" to "name-based" reporting of new cases. A name-based system is already used everywhere for AIDS, the advanced stage of HIV infection.

The Centers for Disease Control and Prevention says universal name-based reporting for all HIV cases -- not just AIDS -- is essential for tracking the epidemic in the United States. Having such a system is likely to become the key determinant of how $2.2 billion a year in federal AIDS grants is distributed to cities and states under the Ryan White CARE Act.

It is a time-honored practice for public health departments to record the names of people with specific communicable diseases. Doing so allows health officers to ensure that people are treated so they do not infect others, as in the case of tuberculosis, or to help trace patients' contacts so they can be treated, as with syphilis.

Today, HIV infection in people with no symptoms is the only reportable disease for which some U.S. health departments record cases using only codes, made from letters, birth dates, sex and sometimes elements of Social Security numbers.

Once sworn enemies of collecting the names of HIV-positive people, many activist organizations now either support it or do not oppose it. Some say health departments have shown they can keep the data confidential and, with the advent of effective drug treatments, now have a reason to contact infected people.

"There is this opportunity to do good -- of getting people to find out about their HIV status so they can begin treatment if it's appropriate," said Mark Cloutier, executive director of the San Francisco AIDS Foundation. The organization changed its position against name-based reporting five months ago.

A bill requiring name-based reporting of HIV passed one chamber of California's legislature in January and is before the other.

But this view is not universal.

Some people "will be driven away from the system if we cannot guarantee confidentiality. It may be the very people you want to most engage in testing and the health care system," said Denise McWilliams of the AIDS Action Committee of Massachusetts, which uses only codes.

The move to name-based reporting has long been in the wind. Last July, CDC Director Julie L. Gerberding sent a letter to state health departments saying -- twice, in italics -- that the agency "recommends" name-based reporting.

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