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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.

• There are no data to support the assertion that collection of the number and names of persons who voluntarily test for HIV will provide an accurate, or even representative, picture of the reach or prevalence of HIV.
• Studies show that those who take HIV tests (and many don't) typically delay testing until they become sick and are no more than a few years from an AIDS diagnosis. As a result, names-based HIV reporting will always leave significant numbers of people uncounted.
• In New Jersey, for example, a state which has had a mandatory name reporting system in place since 1992, the number of HIV cases reported is less than one-third of the CDC's own conservative estimates of how many people in the state are infected.
• Other available methods of HIV surveillance must be explored that will yield more accurate information without compromising the privacy rights of people with HIV. These include the use of blinded seroprevalence studies and statistical sampling.
• The ability to do "look-back" studies, or to track individual cases, can be accomplished without collecting the names of people with HIV. In any event, the ability to do "look-backs" with particular individuals increasingly is unnecessary in a well-constructed surveillance system.

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

• The overwhelming weight of evidence shows that significant numbers of people avoid testing if their names will be reported. Even a CDC-sponsored study, cited to show otherwise, demonstrated that nearly 20% of people interviewed identify names reporting as a factor preventing people from getting HIV tests.

• The failure of the CDC and many state health departments to appreciate the impact of race, class, sexual orientation, and other differences on people's views of name-based reporting is a fatal flaw to names-based HIV surveillance systems.
• Communities of color and other marginalized groups, which are hard hit by both the epidemic and lack of access to health care, historically have good reasons to mistrust the government and its enthusiasm for protecting them. For the poor, the young, gay men of all races, undocumented immigrants and many people of color, reassurances about confidentiality are unpersuasive
.
• Twenty-nine states currently have laws criminalizing the sexual activity of people with HIV, and there is a continued political push to use HIV-surveillance data for more punitive measures targeting people with HIV. Without federal prohibitions on the misuse of testing information for non- epidemiological purposes, names-reporting systems create additional risks for those who decide to learn their HIV status.

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 federal and state governments do not act upon information about HIV prevalence that already is available. It is hypocritical to cry for better data while ignoring those basic findings.
• Data regarding increased infection rates among young adults and women and the efficacy of syringe exchange programs in slowing transmission among intravenous drug users have not resulted in adequate prevention or treatment efforts.

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.

Signed,

(list in formation)

Adolescent HIV Clinic/SUNY Health Science Center Brooklyn AIDS and Adolescents Network of New York New York AIDS Action Washington, D.C. AIDS Action Committee of Massachusetts Boston AIDS Foundation of Chicago Chicago AIDS Legal Council of Chicago Chicago AIDS Legal Referral Panel San Francisco AIDS Project Los Angeles Los Angeles AIDS Services of Dallas Dallas AIDS Survival Project Atlanta 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) Philadelphia Gay & Lesbian Advocates & Defenders/AIDS Law Project Boston 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 Boston	HomoVISIÓNES New York Illinois Federation for Human Rights Chicago International Association of Physicians in AIDS Care (IAPAC) Chicago 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 Seattle Pilsen-Little Village Community Mental Health Center Chicago People With AIDS Coalition of New York New York Privacy Rights Education Project (PREP) St. Louis Positive Voice Washington Seattle PWA Health Group New York Resist the List Seattle San Francisco AIDS Foundation San Francisco San Francisco Department of Public Health/AIDS Office San Francisco Triangle Foundation Detroit United Federation of Teachers New York
INDIVIDUAL SIGNATORIES **
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.