Major Civil Rights and Health Organizations Jointly Warn Against Requiring Names of People with HIV
Over 60 groups unite to warn about bad science and harm to vulnerable communities
(NEW YORK, February 21, 1999) -- More than 60 leading AIDS and civil rights organizations and health care providers for people with HIV jointly warned federal and state health officials against efforts to require the names of people who have HIV, Lambda Legal Defense and Education Fund said Sunday.
Lambda AIDS Project Director Catherine Hanssens said, "Key fighters in the battle against AIDS, particularly physicians and service providers who understand the impact of public policies on patients, have lined up to warn against this agenda. Mandatory names reporting is bad science, bad public health policy, and a waste of funds that should be directed to real AIDS prevention and health care."
Said one physician, former New York City Health and Hospitals Corporation Vice President Robert L. Cohen, "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. Jeffrey Birnbaum, director of the Adolescent HIV Clinic at SUNY Health Science Center in Brooklyn, said, "No one who actually has worked with HIV-positive adolescents or kids at risk could possibly think this push for names reporting is a good idea. My fear is that names reporting will scare kids most likely to be positive away from getting tested."
The joint statement -- a strongly worded open letter circulated by Lambda -- was released as the federal Centers for Disease Control and Prevention (CDC) considers guidelines encouraging states to collect the names of those who test positive for HIV, despite clear signs that such reporting systems lead to inaccurate data about the extent of the epidemic while they also discourage people from getting tested. Nonetheless, amid fears of losing federal funding, the majority of states already have adopted such requirements.
Referring to the proposed guidelines, Hanssens said, "This emperor has no clothes. The names- reporting guidelines may reflect current fashion, but that doesn't make it good science, and on that basis, the CDC's proposal is a sham."
The warning was issued by health and public policy groups and prominent physicians such as:
Among its key points, the letter warned: - Names reporting will yield faulty data and cannot be relied upon to measure the HIV epidemic. - 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.
Additionally, the groups affirmed the need for gathering epidemiological information through methods that do not compromise the privacy rights of people with HIV. They also urged public health officials to use the abundant data already available to improve prevention and treatment programs for at-risk groups like young people and intravenous drug users.
Lambda Legal Director Beatrice Dohrn said, "Public health concerns are linked closely to the need for privacy and the other civil rights of people with HIV. By definition, any program proven to drive people away from testing or medical care is unsound public health policy."
Voicing the frustration of many signatories, Hanssens added, "Just this week, the New York City Health Department reported that a major study found nearly 20 percent of young African-American men surveyed in the city were HIV positive. Here is an example of where prevention resources are needed. Yet, the recently proposed New York state budget would slash millions of dollars from AIDS treatment and service programs, while redirecting more than $4-million to implement the state's new HIV surveillance and partner notification law."
FOR COPIES OF THE FULL OPEN LETTER AND A COMPLETE LIST OF SIGNATORIES, CONTACT LAMBDA'S PUBLIC EDUCATION DEPARTMENT AT 212-809-8585, EXT. 241, OR SEE: www.lambdalegal.org
Other Media Contacts: Dr. Robert L. Cohen (212) 620-0144
Adolescent HIV Clinic/SUNY Health Science Center at Brooklyn -- Dr. Jeffrey M. Birnbaum (718) 467-4446
Callen-Lorde Community Health Center -- Katherine Strieder (212) 271-7268
People with AIDS Coalition of New York -- Doug Wirth (212) 647-1415
Positive Voice Washington -- Mark Garrett (360) 786-6004
AIDS and Adolescents Network of New York -- Maggie Brennan (212) 505-9115
AIDS Survival Project -- Jeff Graham (404) 874-7926
AIDS Action -- Daniel Zingale (202) 986-1300
Gay Men's Health Crisis -- Ronald Johnson (212) 367-1250
AIDS Project Los Angeles -- Nicole Russo-Okamoto (323) 993-1363
San Francisco AIDS Foundation -- Regina Aragon (415) 487-3099
AIDS Action Committee of Massachusetts -- Robert Greenwald (617) 450-1257
Northwest AIDS Foundation -- Steven B. Johnson (206) 860-6293
AIDS Foundation of Chicago -- David Ernesto Munar (312) 922-2322
ACLU AIDS Project -- Michael Adams (212) 549-2623
Contact: Peg Byron 212-809-8585 x 230, 888-987-1984 pager; Catherine Hanssens, 212-809-8585 x215