GLAA criticizes proposed HIV reporting regulations
D.C. Department of Health
Office of the General Counsel
825 North Capitol Street, N.E.
Washington, D.C. 20002
We are writing to comment upon the "Notice of Proposed Rulemaking" published in the December 8 edition of the D.C. Register, pp. 9744-47, amending Chapter 2 of Title 22 by including the reporting of HIV infection for surveillance purposes.
Our organization spearheaded the successful effort in 1999 to persuade Mayor Williams to adopt a Unique Identifier System rather than a names reporting system, such as was being vigorously pushed by then-AHA Administrator Ron Lewis. The fact that 11 Councilmembers had sent a letter to the Mayor in support of our position no doubt played a major role in the Mayor's ultimate decision.
Unfortunately, the "Unique Identifier System" depicted in the proposed regulations, Section 206.3, frustrates the clear intention of the Mayor and the Council. It amounts to a de facto names reporting system because those being tested for HIV will be required to report their full Social Security Numbers (SSN's) so that each person's SSN can be incorporated into heir own unique identifier code.
It is clear that the Health Department does in fact plan to use the SSN to track down the identity of every person who tests positive for HIV. The introduction to the proposed regulations declares that the new system "will enable the District to identify persons infected by HIV sooner and allow them to receive counseling sooner to prevent further spread of the disease." The introduction continues to say that "Early reporting will facilitate early contact of other persons who may have been infected and thereby reduce the spread of the disease."
This violates not only the law, as defined in Section 206.5, but also the explicit guarantee by the staff at AHA to the HIV Surveillance Implementation Advisory Group.
AHA leaders had consistently cited counseling and contact tracing as among the major reasons why they preferred a names reporting system. But then, as now, they simply ignored a mountain of evidence that people at risk for HIV are too often deterred from being tested in the first place if they think their names will become known to the government. Being required to provide their SSN's to the government will also discourage testing - unless the Health Department seriously believes that those being tested will not realize that the government will thereby be enabled to identify them. If the Health Department believes in a strategy of deception, they will soon be disillusioned, if only by word of mouth among the at-risk populations.
We have recently contacted officials at the Lambda Legal Defense and Education Fund, the nation's top public interest law organization advocating for lesbians, gay men, and people with HIV/AIDS, about the Health Department's proposed "Unique Identifier System." Lambda officials told us they are not aware of any jurisdiction requiring the reporting of the full SSN. They did say that Maryland used a partial SSN for its Unique Identifier System, but public health officials there now regret it. Among other problems, people routinely do not know or misremember their SSN. In addition, and of heightened interest here in the District of Columbia, only U.S. citizens have SSN's, leaving foreign residents who need to be tested in limbo.
Accordingly, we urge the Health Department to overhaul the proposed regulations, drop the requirement for the reporting of a full or partial SSN, and move towards what the Mayor and the Council called for in the first place: a true Unique Identifier System that will not endanger the privacy of people with HIV.
Robert J. Summersgill
Gay and Lesbian Activists Alliance of Washington, DC
cc: Office of the Mayor
ACLU/National Capital Area