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
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
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
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
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
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
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.