Coalition Letter Urging CDC to Preserve HIV Counseling and Informed Testing of Pregnant Women

March 20, 2003

Julie Gerberding, M.D., M.P.H.
Director, Centers for Disease Control and Prevention
1600 Clifton Road
Atlanta, Georgia 30333

Dear Dr. Gerberding:

The undersigned organizations oppose any revisions to the CDC's recommendations for HIV screening of pregnant women that fail to uphold the principles of HIV counseling and informed consent. To achieve the CDC's goals of reducing new cases of HIV among women and newborns and of linking HIV-positive women and newborns to appropriate HIV medical care and social services, the CDC should continue to recommend that pregnant women be tested for HIV only if they receive pre- and post-test counseling and give their informed consent to being tested.

Since the early days of the epidemic, counseling and informed consent have been an integral part of HIV testing policy in the United States. In fact, utilization of counseling and informed consent strategies across the U.S. has resulted in significant decreases in the last 10 years in the number of cases of perinatal HIV transmission. Therefore, any revisions to HIV testing guidelines for pregnant women ought to reinforce, not diminish, the importance of obtaining informed consent to HIV testing.

Consider that:

• Counseling and informed consent policies require healthcare providers to talk to their patients about HIV/AIDS. HIV testing, in and of itself, is a poor substitute for prevention education, counseling, and accessible medical care. Any policy, including so-called "opt-out" testing methods, that undermines a woman's right to informed consent to be tested and that results in a net decrease in HIV prevention education and HIV counseling-a cornerstone of our prevention efforts in the U.S.-is counterproductive and will have particularly negative consequences for pregnant women who are not currently HIV-positive but who are at high-risk of becoming infected. Increased HIV testing rates at the cost of less HIV prevention aimed at pregnant women is no victory for HIV prevention in the United States.
• Counseling and informed consent can increase rates of testing among pregnant women. The November 2002 edition of the MMWR reported that, when appropriately counseled, up to 95% of pregnant women will consent to HIV testing during prenatal care. Thus, informed consent and counseling strategies, as distinguished from less voluntary testing methods like "opt-out" and mandatory testing, can achieve the dual goals of high HIV testing rates and addressing the health needs of pregnant women.
  
  That HIV-positive pregnant women reach full term without being tested for HIV is largely the result of two problems. First, many women-especially those at high risk for HIV-do not receive adequate prenatal care. Second, many providers fail to encourage-or even raise the issue of-HIV testing for their pregnant clients. According to the 1998 Institute of Medicine study, this failure stems from provider belief that they know who "ought" to be tested and from general discomfort with the counseling process itself.

• Counseling and informed consent ensures that millions of pregnant women receive basic HIV information and prevention education. Preventing HIV infection in women will prevent HIV infection in their newborns. Pregnant women are at risk for HIV due to the fact that they, by definition, have engaged and may continue to engage in unprotected sex. HIV counseling may reduce the likelihood that a woman and any of her future children are infected with HIV.
• Counseling and informed consent help patients and doctors establish trusting partnerships necessary in maintaining women and children in care and in helping them reap all the benefits of healthcare. An HIV test that is performed without informed consent puts the patient-provider relationship at risk and lowers the overall likelihood of a positive health outcome for the mother and her child.
• Requiring anything less than informed consent disenfranchises pregnant women from the rights afforded other people at risk for HIV. Women should not be punished for being pregnant by being denied the right to make informed choices regarding the health and well being of themselves and their children.

In sum, HIV testing and informed consent are not mutually exclusive, and HIV testing methods should not be judged successful simply because they result in a high number of people being tested. The mere knowledge of a pregnant woman's HIV status, standing alone, does nothing to improve the health of the mother or her newborn. Only by providing care, including education, to pregnant women can we hope to achieve better health outcomes for them and their children. Thank you for your consideration.

Sincerely yours,

AIDS Foundation of Chicago, 411 S. Wells St., Ste. 300, Chicago, Illinois 60607. Contact: David Munar, Associate Director--Policy & Communications, 312-922-2322 ext. 333; Brent E. Adams, Policy Associate, 312-922-2322 ext. 395.

AIDS Legal Council of Chicago, 188 W. Randolph, Ste. 2400, Chicago, Illinois 60601. Contact: Ann Hilton Fisher, Executive Director, 312-427-8990 ext. 12.

ACT UP Philadelphia, P.O. Box 22439 Land Title Station, Philadelphia, Pennsylvania 19110. Contact: Asia Russell, 267-475-2645.

AIDS Legal Referral Panel, 1663 Mission St., Ste. 500, San Francisco, California 94103. Contact: Bill Hirsh, Executive Director, 415-701-1200.

Prof. Elizabeth B. Cooper, Fordham University School of Law, 33 W. 60th St., The Clinic Office-3rd Floor, New York, New York 10023. Phone: 212-636-7067.

The Doug Glaze Memorial Law Project, 1221 N. Wichita, Wichita, Kansas 67203. Contact: Scott Curry, Esq., Executive Director, 316-265-1220.

East Bay Community Law Center's HIV/AIDS Legal Unit, East Bay Community Law Center, 3130 Shattuck Ave., Berkeley, California 94705. Contact: Shelia Hall, Unit Director, 510-548-4040.

GMHC, 119 W. 24th St., New York, New York 10011. Contact: Mark Jason McLaurin, Associate Director for Prevention Policy, 212-367-1456.

Howard Brown Health Center, 4025 N. Sheridan Rd., Chicago, Illinois 60613. Contact: Sean Smith, 773-388-1600.

Human Rights Campaign, 919 18th St., N.W., Ste. 800, Washington, D.C. 20006. Contact: John Vezina, Senior Policy Advocate, 202-628-4160.

Human Rights Watch, 350 Fifth Ave. - 34th Floor, New York, New York 10118. Contact: Joanne Csete, Director - HIV/AIDS and Human Rights Program, 212-216-1224.

Lambda Legal Defense and Education Fund, 120 Wall St., 15th Floor, New York, New York 10005-3904. Contacts: Heather Sawyer, Senior Staff Attorney, 312-663-4413 ext. 22; Jonathan Givner, AIDS Project Staff Attorney, 212-809-8585 ext. 218.

Legal Assistance Foundation of Metropolitan Chicago, HIV/AIDS Project, 111 W. Jackson, #300, Chicago, Illinois 60604. Contact: Michelle J. Gilbert, Supervisory Attorney and Project Director, 312-347-8315.

Minnesota AIDS Project, 1400 Park Ave., Minneapolis, Minnesota 55404. Contact: Bob Tracy, Director - Community Affairs & Education, 612-373-2459.

Nashville CARES, 209 10th Ave. South, #160, Nashville, Tennessee 37203. Contact: Joseph Interrante, Executive Director, 615-259-4866.

National AIDS Fund, 1030 15th St., N.W., Ste. 860, Washington, D.C. 20005. Contact: Kandy Ferree, President & CEO, 202-408-4848 ext. 242.

National Health Law Program, 2639 S. La Cienega Blvd., Los Angeles, California 90034. Contact: Randolph T. Boyle, Staff Attorney, 310-204-6010.

National Minority AIDS Council, 1931 13th St., N.W., Washington, D.C. 20009. Contact: Javier Salazar, Acting Director for Governmental Relations and Public Policy, 202-483-6622.

Project Inform, 205 13th St., #2001, San Francisco, California 94103. Contact: Ryan Clary, Senior Policy Advocate, 415-558-8669 ext. 224.

Public Interest Law Office of Rochester, 80 St. Paul St., Ste. 701, Rochester, New York 14604. Contact: Sarah J. Gilmour, Senior Attorney, 585-295-5812.

Test Positive Aware Network, 5537 N. Broadway, Chicago, Illinois 60640. Contact: Charles Clifton, Executive Director, 773-989-9400.

Title II Community AIDS Network, 1775 "T" St., N.W., Washington, D.C. 20009. Contact: William E. Arnold, 202-588-1775.

Treatment Action Group, 611 Broadway, Ste. 612, New York, New York 10012. Contact: Rob Camp, Antiviral Project Director, 646-331-4323.

Press release on coalition letter