GLAA testifies on HIV surveillance for DOH oversight hearing
P. O. Box 75265
Washington, D.C. 20013
February 26, 2001
The Honorable Sandy Allen
Committee on Human Services
Council of the District of Columbia
441 4th Street, N.W.
Washington, D.C. 20001
Dear Mrs. Allen:
On behalf of the Gay & Lesbian Activists Alliance of Washington, DC (GLAA), I am pleased to submit this statement for the record of your committee's February 23 oversight and performance hearings for the Department of Health.
We are disappointed and frustrated that the Agency for HIV/AIDS (AHA) has not had a director for more than a year. The Department of Health reports that DC has a higher rate of AIDS and HIV than in any other city or state, eight times higher than the federal average. If the Department of Health were even modestly interested in being responsive to this on-going crisis, they would have found a new director.
The Department of Health has also been unable or unwilling to account for how it is spending money on AIDS prevention and treatment. No accounting is publicly available of how federal dollars are being granted to local agencies. Unfortunately, local AIDS care providers are becoming suspicious of AHA and have contacted GLAA about the problem.
AHA's refusal to divulge how public dollars are being spent, a history of mismanagement at AHA, convictions in other states for theft of federal AIDS dollars, and a new requirement in the federal Ryan White AIDS funding for random audits all point up the need for the DC Inspector General to be directed by the Council to conduct a multi-year audit of AHA. A minimum of five years should be audited to determine just how AHA is spending our money, including the federal Ryan White grants. If the DC Government delays in auditing itself, the federal government will do it for us. It will be far better to find out for ourselves than be found by the federal government to be mismanaging our funds, or worse.
We have also been frustrated by the implementation of a unique identifier system for HIV surveillance purposes. You will recall that GLAA spearheaded the 1999 campaign against the Department's original plans for a names reporting system. Eleven Councilmembers, led by Jack Evans, signed a letter to the Mayor on July 27, 1999 expressing their opposition to any such system. (A 12th member subsequently went on record with the same position.) A few weeks later, Mayor Williams publicly announced that the District would not implement a names reporting system but would instead opt for a unique identifier system. Health Department officials present for this news conference pledged to fulfill the Mayor's commitment.
On November 17, 1999, then-GLAA President Craig Howell met with the new head of the Health Department, Dr. Ivan Walks. Dr. Walks told Mr. Howell that the Department was moving rapidly to develop a unique identifier system, and expected to recommend to the Mayor in a few weeks the names of those willing to serve on a citizens advisory panel to help review the process.
In fact, however, no such panel was appointed until nearly a year later. I was among those who agreed to serve on the HIV Surveillance Implementation Community Advisory Committee, and attended the group's first and third meetings last fall. At the first meeting, Mr. Ron Lewis, the former head of AHA and now promoted to Senior Deputy Director for Health Promotion, categorically disavowed any intention of the Department to develop a unique identifier system that could be used to identify those testing positive for HIV for purposes of counseling or contact tracing. I was unable to attend two other meetings of this advisory group.
I am at a loss to explain why the Department dragged its feet for so long in developing an HIV surveillance system. Its delay put the District's funding from the federal Centers for Disease Control (CDC) slated for this project in jeopardy. The Department finally published its proposed regulations in the December 2 edition of the D.C. Register, and gave the public only a couple of weeks to comment.
Oddly, the preamble to the proposed regulations did not cite the looming CDC funding deadline as the rationale for the abbreviated public comment period. Instead, it declared 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 preamble continued: "Early reporting will facilitate early contact of other persons who may have been infected and thereby reduce the spread of the disease."
In short, the Department went on record in favor of a de facto names reporting system, identifying HIV-positive persons by name for purposes of contact tracing and counseling-an act of gross insubordination against the Mayor, not to mention a violation of the explicit pledge made to myself and other members of the community advisory group.
The proposed regulations provided the means whereby HIV-positive persons would be identified, i.e., by requiring that their full Social Security numbers be provided to the Department by the testing agency.
GLAA vigorously protested the proposed regulations in a December 20 letter to the Department's General Counsel. I have enclosed a copy of that letter with this statement. Mr. Lewis responded 2 days later on Friday, December 22; a copy of that letter is enclosed as well. He claimed that there was a mistake in the original published version, since only the last four numbers of a person's Social Security number were to be reported. But as it turns out, the final version of the regulations was officially released on that Friday with no changes whatsoever, no doubt because any changes got lost in the haste to rush home to begin the Christmas holidays. The red-faced Department was forced to publish a "Corrected" final version in the Register a few weeks later.
We at GLAA are not fully mollified by the shift to reporting of the last four digits of a HIV-positive person's Social Security number. Mr. Lewis made no effort, either in his December 22 letter to us or in either of the "final" regulations published subsequently in the Register, to repudiate the Department's public endorsement of contact tracing and individual counseling. On the contrary: He stated in his December 22 letter that "traditional public health interventions such as contact tracing would not necessarily be the most appropriate venue to follow." That term "not necessarily" gives him all the wiggle room he would need to justify a reversion to precisely those inappropriate techniques.
From the beginning, we have been skeptical of Mr. Lewis' commitment to a unique identifier system, in light of his fervent if not extreme lobbying for a names reporting system prior to August 1999. We fear that Mr. Lewis will still attempt to use the four Social Security digits provided, in conjunction with other information that must be reported on HIV-positive persons, to identify those people. There is no good reason - but plenty of bad ones - to require reporting of any Social Security digits as an integral part of a unique identifier system.
Dr. Patricia Hawkins of the Whitman-Walker Clinic came to a recent GLAA meeting to urge, among other things, the passage of legislation to strengthen confidentiality protections for people testing positive for HIV. She cited some recently published federal regulations as providing a good model for the District to follow. We urge this committee to investigate this matter in some depth. An explicit ban on counterproductive and inappropriate strategies such as contact tracing in this context may well become part of any such legislation.
In the meantime, we trust this committee will be vigilant to ensure that Mr. Lewis and his colleagues will not frustrate the clear commitment of this Council and the Mayor to respect the confidentiality of persons with HIV. Such a commitment is necessary lest we discourage people from being tested in the first place, as too often has been the case in those jurisdictions with names reporting systems.
Thank you for your consideration.
cc: All Councilmembers
The Honorable Anthony Williams
Dr. Ivan Walks, Department of Health
Mr. Philip Pannell, Office of the Public Advocate