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D.C. Council weighs 'unique identifier' HIV testing bill: Proposed legislation highlights rift between activists, city AIDS office over tracking system


Washington Blade - October 5, 2001

Ron Simmons of Us Helping Us said a unique identifier system will make little difference to low-income people. (by Clint Steib) D.C. Councilmember Phil Mendelson (D-At-Large) introduced a bill before the D.C. Council Sept. 19 that calls for prohibiting the city from using all or a portion of a person's Social Security number as part of a numerical coding system to be implemented next year by the District's Department of Health. The system is designed to keep track of city residents who test positive for HIV.

Mendelson's bill, which has six co-sponsors, would also require the DOH to include transgendered persons in its encoded HIV tracking system, also known as a "unique identifier" system. In addition, it requires the DOH to explicitly state in municipal regulations outlining the tracking system that the system shall not be used to trace the partners of people who test positive.

"Taken together, these changes will help create a strong and effective surveillance system to help us better design and develop programs and target key populations for education and prevention programs," Mendelson said. Mendelson and his council colleagues who signed on as co-sponsors say their aim is to "fine-tune" the unique identifier system, in partnership with the DOH, to insure that large numbers of residents don't refuse to come forward for HIV testing out of fear of being publicly identified.

But some gay and AIDS activists say they urged the Council to step in after Ron Lewis, director of the city's Administration for HIV/AIDS, who developed the unique identifier system, refused to back down on plans to use the last four digits of a person's Social Security number -- along with the person's country of origin and date of birth -- as the basis for the system's numeric code.

Activists say Lewis and other officials at the DOH have been unresponsive to repeated requests that they broaden the city's HIV surveillance plan to include transgendered persons, who have been shown in studies to be at high risk for HIV infection.

Under Lewis' unique identifier surveillance plan, city health officials are directed to obtain during HIV testing the last four digits of the person's Social Security number; the city, state, and ZIP code of residence; the sex, race, or ethnicity; the mode of exposure of HIV (i.e.: sexual transmission, injection drug use, etc.); date of birth, country of birth; and occupation.

The D.C. Gay and Lesbian Activists Alliance and the AIDS protest group ACT UP/D.C. argued that recording a portion of someone's Social Security number, along with the person's country of origin, would discourage immigrants as well as U.S.-born residents from being tested for HIV.

Lewis has said the use of a portion of a person's Social Security number in the unique identifier system along with a person's date of birth is needed to insure that the city doesn't count the same people twice in cases where they are tested in more than one place. GLAA and ACT UP disagree with that assessment, saying a carefully prepared numeric code can be developed to avoid double counting.

Ron Simmons, executive director of the local AIDS service group Us Helping Us, has sided with Lewis, saying a system that fails to adequately keep track of residents who test positive for HIV could result in reduced funding for programs aimed at minorities, including African American gay men. Simmons has argued that a unique identifier system will likely make little difference to low-income people who must rely on city-financed programs for HIV-related medical services.

He notes that patients participating in such programs must reveal their names and addresses at the time they seek treatment.

Simmons also points out that the city will continue to fund anonymous HIV testing sites, where residents don't have to reveal any personal information, only a number used to obtain the test results.

GLAA President Bob Summersgill disputes Simmons's assessment, saying low-income people are just as likely to be fearful of revealing their names to the government at the time they decide whether or not to get tested. Putting off testing, Summersgill said, means low-income people -- like all others -- won't learn of their HIV status until they become ill, preventing them from taking advantage of advanced HIV drugs that can prevent them from developing full-blown AIDS. Summersgill said he supports anonymous HIV testing programs, but said anonymous testing cannot provide cities and states with important demographic information needed to help fight the AIDS epidemic that a unique identifier system provides, such as the number of HIV infections within various population groups.

The U.S. Centers for Disease Control and Prevention has issued a rule requiring all states and D.C. to begin keeping demographic and numerical records of all persons who test positive for HIV, ending the nation's longstanding policy of keeping track of only those who have full-blown AIDS. The CDC wants states and the District to begin the new record-keeping systems -- either through the full reporting of names or a unique identifier system -- by 2002. Failure to comply with the system could lead to the withholding of millions of dollars in federal AIDS assistance funds from states and D.C.

Openly gay D.C. Councilmembers David Catania (R-At-Large) and Jim Graham (D-Ward 1), who are among the co-sponsors of the Mendelson bill, say they share the concerns raised by GLAA and ACT UP and are troubled by the apparent refusal by the DOH to consider modifying Lewis' unique identifier plan.

"I feel the issue is of such importance that it should come before the Council," said Catania. "We are not trying to second-guess the mayor or Ron Lewis. What this means is the Council must speak as the city's elected leadership." Graham noted that Lewis had favored a system of full HIV names reporting until D.C. Mayor Anthony Williams (D) overruled him and directed Lewis to adopt the unique identifier system for HIV tracking. Graham, the former director of the city's Whitman-Walker Clinic, said he respects Lewis's views, but is concerned that Lewis has not been responsive to requests by the Council and community organizations in his implementation of the unique identifier system.

"I feel the plan they have in mind now, which uses Social Security numbers, will defeat the very idea of this type of system, which is to get people tested," Graham said.

In addition to Catania and Graham, others who signed on as co-sponsors to the Mendelson bill are Councilmembers Jack Evans (D-Ward 2), Adrian Fenty (D-Ward 4), Sharon Ambrose (D-Ward 6), and Kevin Chavous (D-Ward 7). The seven members backing the bill hold a sufficient number of votes to pass the bill in the 13-member Council.

Thirty-two states have already chosen to adopt names reporting systems, saying their public health departments have strong records of protecting the confidentiality of patients tested for other sexually transmitted diseases.

However, a coalition of gay, AIDS, and civil liberties groups issued a joint statement two years ago expressing strong opposition to names reporting. Members of the groups argued that names reporting would discourage large numbers of people at risk for HIV from getting tested.

Among the groups signing on to the statement were the D.C. CARE Consortium, a community-based agency that advises the city on AIDS-related issues; the National Black Lesbian and Gay Leadership Forum; the National Latina/o Lesbian, Gay, Bisexual, and Transgender Organization; the National Minority AIDS Council; the National Urban League; and Gay Men of African Decent. Also signing on to the statement were former U.S. Surgeon General Joycelyn Elders and U.S. Rep. John Lewis (D-Ga.), a longtime civil rights leader.


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Information in this article was accurate in October 5, 2001. The state of the art may have changed since the publication date. This material is designed to support, not replace, the relationship that exists between you and your doctor. Always discuss treatment options with a doctor who specializes in treating HIV.