Howell testifies against mandatory HIV names reporting
Related Links

GLAA on AIDS and Public Health

Open Letter to Public Health Officials Regarding Names-Based HIV Reporting 03/15/99

GLAA joins AIDS experts opposing mandatory HIV names reporting 02/21/99

ACLU Comments on CDC Draft Guidelines on National HIV Case Surveillance 01/11/99

CDC Draft Guidelines for HIV Case Surveillance 12/10/98

San Francisco AIDS Foundation Critique of HIV Names Reporting 05/98

TESTIMONY FOR OVERSIGHT HEARINGS
ON THE D.C. DEPARTMENT OF HEALTH

Committee on Human Services
D.C. Council

FEBRUARY 23, 1999

Ms. Allen, Members of the Committee, and Fellow Citizens:

My name is Craig Howell. I am President of the Gay and Lesbian Activists Alliance of Washington (GLAA), the nation’s oldest continuously active gay and lesbian rights organization. We will be celebrating our 28th anniversary with a reception at the Sumner School on Thursday evening, April 22; we hope you will all be able to attend. Thank you for this opportunity to testify today at these oversight hearings for the D.C. Department of Health.

Let me note for the record that GLAA was one of the many groups in the District that had long advocated the creation of a separate Department of Health, independent of the Department of Human Services. We are gratified that our efforts were successful.

I want to confine my remarks today to just one topic that should be of intense interest to this committee; namely, the development of an effective method for tracking the incidence of HIV in the District of Columbia. In particular, we have spent an enormous amount of energy over the past year fighting the drive for the imposition of what is usually termed a names reporting system for people who have tested positive for HIV.

We are gratified that thanks to the personal intervention of our new Mayor, Anthony Williams, the momentum towards the imposition of a names reporting system here in D.C. by the Agency for HIV/AIDS (AHA) has been halted. During last year’s campaign, GLAA had asked all candidates for Mayor and Council through our candidates’ questionnaire their positions on a number of issues, including names reporting. Mr. Williams replied unambiguously that he was against it; so did a majority of the new D.C. Council — Councilmembers Ambrose, Catania, Cropp, Evans, Graham, Mendelson, and Patterson. Not a single Councilmember voiced support for a names reporting system.

We regret that this Committee missed an opportunity to play an official role in bringing about an end to AHA’s drive towards names reporting. On January 11 of this year, I wrote you a letter as Chairman of this Committee asking for the convening of a special hearing on this entire issue as soon as possible. Councilmember Carol Schwartz, while remaining noncommittal on the merits of the names reporting issue, echoed our call for a public hearing in a January 15 letter.

Unfortunately, we never did receive a reply from Ms. Allen to our January 11 letter. But later that month, following my phone conversation with him, Councilmember David Catania took it upon himself to personally ask Mayor Williams to order AHA Director Ron Lewis to cease planning for a names reporting system. The Mayor promised that he would do so; and the Mayor’s Office has confirmed to us that this has been done. We wish to thank both the Mayor and Mr. Catania for living up to their campaign promises.

Fortunately, it is not too late for this Committee to play an active role in shaping the legislation and policies that will be required to implement an effective system for HIV surveillance — one that meets the legitimate needs of public health authorities while also respecting the no less legitimate privacy interests of people who are HIV-positive. Councilmember Catania has called for a hearing on this subject in April so that the Council can make its wishes plain. This Committee is the logical body to convene such a hearing. We believe it is entirely appropriate for our elected officials to be making policy, rather than merely rubber-stamping the preferences of the bureaucrats. That is, after all, what elections are for.

For our part, GLAA is on record in support of what is usually termed a unique identifier system. Such a system is already in place in Maryland and Texas, and Massachusetts is moving towards a similar system. Unlike those states that have imposed a names reporting system, people who test positive for HIV in states with unique identifier system need not worry that their names will be reported to public health agencies. Instead, public or private agencies that administer the HIV tests assign everyone who comes to be tested a unique identifier code of some sort. This allows those testing centers to supply the statistics for HIV incidence that public health authorities need to trace the prevalence of HIV, with appropriate demographic information, without compromising the confidentiality of those who have tested positive.

In preparation for any hearings you may call, we hope you will direct your Committee staff to investigate Maryland’s experiences with a unique identifier system. In this respect I call your attention to a December 1997 report by the American Civil Liberties Union, titled: The Maryland Lesson: Conducting Effective HIV Surveillance With Unique Identifiers.

The great and insuperable problem with a names reporting system is that it discourages those people most at risk from HIV from being tested in the first place. Numerous studies throughout the country have confirmed this disastrous and counter-productive result. As a December 1998 report by the ACLU pointed out, data collected by the federal Centers for Disease Control and Prevention (CDC) indicate that, by CDC’s own admission, as many as 20 percent of high-risk persons may have delayed seeking HIV testing because of fears raised by the fact that their names would be reported to government authorities if they tested positive.

Locally, AHA officials were assuring everyone that they had erected sufficient safeguards so that the confidentiality of the people testing positive for HIV would never be compromised by the District government. Unfortunately, this is one assurance AHA is powerless to guarantee because of the District’s subservience to the federal government. No matter what promises AHA makes today, Congress and/or the Clinton Administration are free to ignore them tomorrow. Given the foolishness and outright demagoguery of many Congressional and Administration policies on AIDS prevention — needle exchanges and medical marijuana are the two most prominent current examples — we see no reason to make HIV-positive persons in the District more vulnerable to mean-spirited federal policies by implementing a names reporting system.

We very much regret that CDC has spearheaded the effort to encourage states to adopt a names reporting system, in spite of a mountain of evidence against its effectiveness. AHA’s drive for such a system here was explicitly in response to pressure from CDC, especially as expressed in the CDC’s recent “Draft Guidelines for HIV Case Surveillance, Including Monitoring HIV Infection and AIDS.”

This Committee should be aware of the massive backlash that the CDC Draft Guidelines have engendered throughout the country. Just this past Sunday, the Lambda Legal Defense and Education Fund released an “Open Letter to Public Health Officials Regarding Names-Based HIV Reporting” signed by more than 60 leading AIDS and civil rights organizations and health care providers for people with HIV, including, I’m proud to say, GLAA. (They are still accepting signatories for this letter, and we hope that the members of this Committee will sign on.) Other major signatories include the San Francisco Department of Public Health AIDS Office, the National Minority AIDS Council, the National Black Lesbian and Gay Leadership Forum, National Latina/o Lesbian, Gay, Bisexual, and Transgender Organization, Dr. Joseph Sonnabend (co-founder of the American Foundation for AIDS Research), and Dr. Robert Cohen (former New York City Health and Hospitals Corporation Vice President).

In Dr. Cohen’s own words: “As someone who has long treated patients with HIV, I know how difficult it is for people to decide to get tested. By requiring me to report the names of those who test positive, the government drives a wedge between me and my patients. This is dangerous public health policy.” Dr. Cohen knows from experience, because the New York State Legislature passed legislation mandating a names reporting system last year.

I also want to point out that the adoption of a names-reporting system has been accompanied in no less than 11 states by the abolition of anonymous testing. Even though CDC frequently proclaims the absolute, vital necessity for keeping anonymous testing sites open in all states, it continues to provide full funding for these 11 states. Are we prepared for the abolition of anonymous testing here in the District — by Congressional order or otherwise?

I have attached a copy of that Open Letter to my testimony. It is a concise summary of why names reporting just doesn’t work. I also recommend that you study the ACLU’s excellent coments on the CDC Draft Guidelines. You can find the full text of these solidly-researched comments on the web at the following address: http://www.aclu.org/congress/l011299a.html

Last month, Dr. Pat Hawkins of the Whitman-Walker Clinic mentioned at one of our GLAA meetings that new legislation may be needed here in D.C. in order to toughen penalties for anyone who discloses the names of people with HIV. She indicated such legislation is needed even if the District moves towards implementing a unique identifier system. Other authorities have voiced similar opinions elsewhere. We have an open mind on this topic and feel that exploring this topic in a hearing is another example of how this Committee can play a constructive role.

Thank you. I would be glad to answer any questions you may have.

[In the ensuing Question & Answer period, Ms. Allen said that she has long been on record in opposition to names reporting, and told CDC officials in Atlanta 18 months ago of her opposition. She said she did not receive the GLAA candidates’ questionnaire last year because she was not running for anything, but wanted everyone to know that she appreciated the confidentiality problems we have raised. She said she can not yet commit to a date for a hearing because the Council chambers are booked into April.]


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