Open Letter to Public Health Officials Regarding Names-Based HIV Reporting
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Open Letter to Public Health Officials Regarding Names-Based HIV Reporting

February 1999

Dear Health Official:

As service providers, members, and leaders in communities that have felt the impact of the AIDS epidemic, we are extremely concerned about the aggressive push to require the gathering of names of people who test positive for HIV.

The Centers for Disease Control and Prevention, in its proposed national guidelines urging all 50 states to adopt names-based HIV reporting systems, ignores or mischaracterizes the existing data against such systems. The federal agency fails to see how collecting names actually will produce inaccurate data about the extent of HIV infection in this country rather than serve the legitimate public health goal of securing a truly useful picture of the epidemic's reach.

Moreover, while misstating the value of names-reporting, the CDC has trivialized the serious concerns raised by community members regarding the harmful impact of names reporting on populations disproportionatelyaffected by the epidemic. Without adequate services or legal protections, names reporting imperils the civil rights of people with HIV without benefits to balance the risks.

Regretfully, a number of states have already adopted names-reporting systems under pressure from CDC officials, fearing failure to adopt such a system will result in the loss of federal funds. This is a warning to the CDC and others responsible for the public's health that the concerns outlined in this letter must be addressed if the scope of the HIV epidemic is to be measured more accurately, and most importantly, to protect the vulnerable members of our communities affected by HIV.

Ignoring these problems will only increase the suffering and loss of human life in this country.

Names reporting will yield faulty data and cannot be relied upon to measure the HIV epidemic. We support gathering better epidemiological information through other HIV reporting methods so that prevention and treatment resources can be allocated where they are needed most.

Names reporting engenders fear that discourages testing and creates more barriers to health care. Options for anonymous testing must be truly available.

Government support for HIV education and prevention programs must increase among communities known to have high rates of infection; public health officials at both the state and federal levels must become vocal and visible in opposing government restrictions on effective school and community-based prevention programs.

The interests of public health and the perceptions and privacy concerns of people with HIV are closely linked. If accurate information about the extent of the HIV epidemic is to be gathered, the needs of those with HIV must be taken into serious consideration. We urge all public health officials to reject HIV surveillance systems that rely on names-based case reporting of those who test positive for HIV.


(list in formation)

Adolescent HIV Clinic/SUNY Health Science Center

AIDS and Adolescents Network of New York
New York

AIDS Action
Washington, D.C.

AIDS Action Committee of Massachusetts

AIDS Foundation of Chicago

AIDS Legal Council of Chicago

AIDS Legal Referral Panel
San Francisco

AIDS Project Los Angeles
Los Angeles

AIDS Services of Dallas

AIDS Survival Project

American Civil Liberties Union/AIDS Project
New York

Asian and Pacific Islander Coalition on HIV/AIDS (APICHA)
New York

Asian and Pacific Islander Wellness Center
San Francisco

Audre Lorde Project
New York

Birmingham AIDS Outreach
Birmingham, Alabama

California Prison Focus/HIV in Prison Committee
San Francisco

Callen-Lorde Community Health Center
New York

Coalición de Inmigrantes Positivos
New York

Colombian Lesbian and Gay Association
New York

Community AIDS Resource and Education Services of Southwest Michigan
Kalamazoo, Michigan

The GALAEI Project (Gay and Lesbian Latino AIDS Education Initiative)

Gay & Lesbian Advocates & Defenders/AIDS Law Project

Gay and Lesbian Activists Alliance
Washington, D.C.

Gay Men's Health Crisis
New York

Harm Reduction Coalition
New York

Harvard AIDS Institute/Leading for Life

New York

Illinois Federation for Human Rights

International Association of Physicians in AIDS Care (IAPAC)

Lambda Legal Defense and Education Fund
New York

Latino Commission on AIDS
New York

Latino Gay Men of New York
New York

Lesbian/Gay Community Center (Affirmations)
Ferndale, Michigan

Lesbian and Gay Immigration Rights Task Force
New York

Lower East Side Family Union
New York

Mano a Mano
New York

Mason County HIV/AIDS Advisory Council
Shelton, Washington

National Black Lesbian & Gay Leadership Forum
Washington, D.C.

National Latina/o Lesbian, Gay, Bisexual & Transgender Organization (LLEGO)
Washington, D.C.

National Minority AIDS Council
Washington, D.C.

Northwest AIDS Foundation

Pilsen-Little Village Community Mental Health Center

People With AIDS Coalition of New York
New York

Privacy Rights Education Project (PREP)
St. Louis

Positive Voice Washington

PWA Health Group
New York

Resist the List

San Francisco AIDS Foundation
San Francisco

San Francisco Department of Public Health/AIDS Office
San Francisco

Triangle Foundation

United Federation of Teachers
New York


H. Aaron Aronow, MD, University of Southern California School of Medicine

Phil Bereano, PhD, member of the Board of Directors, ACLU

Jeffrey M. Birnbaum, MD, MPH

Robert L. Cohen, MD

John Falkenberg, RN

Michael Gottlieb, MD

Gayann Hall, MD

Jeffrey D. Heard, HIV/AIDS Counseling and Outreach Center, Cleveland

Deborah J. Glick, New York State Assembly

Richard N. Gottfried, Chairperson, New York State Assembly Health Committee

W. David Hardy, MD, University of California at Los Angeles School of Medicine

Luis E. Nieves-Rosa, MSW

Jane Pitt, MD, Columbia University

Helen Schietinger, MA, ACRN

Michael Shriver, AIDS Policy Research Center

Joseph A. Sonnabend, MD

Ellen M. Tedaldi, MD, Temple University Hospital

** Organizations listed for identification purposes only.

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