Open Letter to Public Health Officials Regarding Names-Based HIV Reporting
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.
(list in formation)
Adolescent HIV Clinic/SUNY
Health Science Center
AIDS and Adolescents Network of
AIDS Action Committee of Massachusetts
Foundation of Chicago
AIDS Legal Council of Chicago
AIDS Legal Referral Panel
AIDS Project Los Angeles
AIDS Services of Dallas
AIDS Survival Project
American Civil Liberties Union/AIDS Project
Asian and Pacific Islander Coalition on HIV/AIDS
Asian and Pacific Islander Wellness Center
Audre Lorde Project
Birmingham AIDS Outreach
California Prison Focus/HIV in Prison Committee
Callen-Lorde Community Health Center
Coalición de Inmigrantes Positivos
Colombian Lesbian and Gay Association
Community AIDS Resource and Education Services of Southwest
The GALAEI Project (Gay and Lesbian Latino AIDS Education
Gay & Lesbian Advocates & Defenders/AIDS Law Project
Gay and Lesbian Activists Alliance
Gay Men's Health Crisis
Harm Reduction Coalition
Harvard AIDS Institute/Leading for Life
Illinois Federation for Human Rights
International Association of Physicians in AIDS Care (IAPAC)
Lambda Legal Defense and Education Fund
Latino Commission on AIDS
Latino Gay Men of New York
Lesbian/Gay Community Center (Affirmations)
Lesbian and Gay Immigration Rights Task Force
Lower East Side Family Union
Mano a Mano
Mason County HIV/AIDS Advisory Council
National Black Lesbian & Gay Leadership Forum
National Latina/o Lesbian, Gay, Bisexual & Transgender Organization
National Minority AIDS Council
Northwest AIDS Foundation
Pilsen-Little Village Community Mental Health Center
People With AIDS Coalition of New York
Privacy Rights Education Project (PREP)
Positive Voice Washington
PWA Health Group
Resist the List
San Francisco AIDS Foundation
San Francisco Department of Public Health/AIDS
United Federation of Teachers
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.