Commentary: The Histrionic Push for Mandatory Perinatal HIV Testing
Research overwhelmingly shows that voluntary HIV testing programs are working for pregnant women and that maternal-fetal transmission rates are dropping. The threat of mandatory testing in other populations meanwhile has been shown to drive people away from the health care system. These observations notwithstanding, the May 1996 reauthorization of the Ryan White CARE Act included an amendment allowing for -- and, in fact, encouraging -- mandatory HIV testing of newborns. (And newborn testing implies testing of the women who bore the children since testing at birth reflects the mother's antibodies, not the child's.) This law will be phased in over a period of four years and was the culmination of several federal efforts to mandate HIV testing of pregnant women and/or newborns.
Additionally, New York State implemented legislation in February of 1997 mandating the testing of newborns. (The HIV Law Project in New York City recently filed a class action suit against the State of New York and two hospitals, see box.) In 1995, California defeated an effort to mandate testing by creating a bill that supports the federal Centers for Disease Control guidelines, which advise counseling and voluntary testing for pregnant women.
A major part of the justification for mandatory HIV testing was the results of just one clinical trial, ACTG 076 (1994). ACTG 076 demonstrated that maternal-fetal HIV transmission could be reduced by as much as two-thirds through the administration of zidovudine (AZT) during pregnancy and in the newborns. Because of these data, efforts to test all pregnant women and then coerce those who are HIV-positive to take AZT as a means of protecting the fetus have begun -- without discussion of AZT's potential toxicity for the mothers and the lack of information on the long-term effects on the babies. HIV-positive pregnant women have been threatened with the loss of their children if they do not take AZT. (AZT monotherapy is still the current standard of care for only one population: pregnant women. Protease inhibitors are just beginning to be studied in pregnant women.)
The AIDS movement historically has opposed any form of mandatory HIV testing. But the strength of the movement's response has varied depending on the population targeted for testing. This case involved an especially disenfranchised population made up mostly of poor women of color, and the move to test was sometimes characterized as a "women's issue rather than an AIDS issue."
Of course there are broader, non-HIV issues involved: The ability of policymakers to successfully target pregnant HIV-positive women emanates from a long history of attacks on the rights of women to control their own bodies, including their reproductive rights. Obstetric practice in the U.S. has become so oppressive and alienating that many poor women avoid prenatal care. More affluent women frequently search out alternative, more compassionate birthing experiences outside the mainstream.
Because we have not sufficiently developed a more powerful response to defeat HIV testing efforts through public health, legal, civil liberties and HIV-specific arguments, there is an ongoing need for strategizing and grassroots organizing within the HIV communities. We can still stop the implementation of the Ryan White CARE Act Testing Amendment. We can continue to bring the numbers down without mandatory testing or forced medical treatment. By encouraging the CDC and the states to focus on educating all women as to the importance of HIV prevention, by encouraging women to consider being voluntarily tested prior to becoming pregnant, and by targeting our efforts toward noncoercively reducing the number of perinatal transmissions. If the states can demonstrate that their voluntary programs are successful, then a federal determination that mandatory testing be "routine practice" throughout the country will not occur. We must ensure this outcome through serious state-by-state organizing and through a strong national coalition effort that places this issue squarely at the center of the AIDS movement's priorities.
An in-depth analysis of this issue is forthcoming. Contact Eileen Hansen, AIDS Legal Referral Panel, 582 Market Street, Suite 912, San Francisco, CA 94104, 415/291-5454.
|Editor's note: In July 1997, HIV Law Project filed a class action lawsuit against New York State and two Bronx hospitals regarding deficiencies and abuses in implementation of New York State Law, Chapter 220, which mandates newborn HIV-antibody screening. Violations of patient rights are alleged, including: not offering voluntary counseling and testing during pregnancy; not informing mothers that their infants are being tested for HIV; not giving appropriate counseling; and not providing newborn HIV test results to mothers in a timely manner.|
Passionate positions have been staked out on the subject of testing. Governmental agencies, public health leaders, medical providers and women at risk of HIV infection all have a strong interest in preventing perinatal transmission of HIV. Though the goals overlap, the strategies to achieve these goals are often at odds. While knowledge of factors related to perinatal transmission and its prevention has increased measurably in the past few years, knowledge gaps are often evident in debate regarding mandating HIV testing in newborns. Vigilant protection for the civil rights of women and their children is critical.
However, many public health experts and medical professional would argue for routine HIV testing in all primary care settings (not unlike routine syphilis testing, or routine cholesterol testing). Central to both positions is the reality that HIV infection is not a "routine" disease. HIV testing is afforded special legal status, generally requiring an informed consent procedure. Routine testing (not mandatory testing) in any setting will not be feasible until we overcome knowledge gaps and vanquish the stigma associated with HIV that is still manifest in policymakers, medical providers and the public at large. We must also be able to guarantee that HIV testing in pregnancy and in the newborn will not lead to greater harm than good for women and their children. Examples of harm to the mother would include risk of relapse to addiction, risk of suicide, risk of domestic violence, and risk of rejection, isolations and abandonment by those in her current support system. Any such impairment of a mother's capabilities obviously will have a strong negative impact on her child's upbringing and care. -- RD