WASHINGTON — WASHINGTON -- House and Senate negotiators tentatively agreed yesterday on a measure that would eventually require states to begin mandatory testing of newborns for HIV, the virus that causes AIDS, if health officials cannot reduce the number of infected infants by other means, people involved in the talks said last night.
States that did not comply would risk losing federal money provided under the Ryan White act, which provides hundreds of millions of dollars in federal money each year for the treatment of people with AIDS.
The testing provision has been agreed to by House and Senate conferees ironing out differences in their versions of the overall bill, congressional aides and others said.
The provision would establish a complicated series of measures that states would have to take, and it was not immediately clear if all of the details had been decided. But several people involved in the conference said the bill would take cautious but certain steps toward national testing of newborns.
The provision would apply only to women whose HIV status is not known.
The question of mandatory testing has long been one of the most contentious AIDS issues, particularly among people who fear that mandatory testing would violate the privacy rights of patients.
The issue is particularly thorny when it comes to newborns. Studies show that steps taken before or at birth can substantially reduce the rate of AIDS transmission from mother to infant. On the other hand, because infected infants can be born only to infected mothers, an infant's test results could reveal the mother's medical condition, whether she wished to be tested or not.
New York is the only state that has addressed the issue in regulation. Like most other states, New York has routinely vTC conducted anonymous AIDS tests on newborns, as a way of tracking the spread of the disease. For the first time, in regulations that will go into effect today, mothers will be able to learn their infants' test results -- and, by proxy, their own.
The agreement ironed out yesterday in the Ryan White Comprehensive AIDS Resource Emergency Act would require doctors and other health care workers to advise pregnant women to be tested for the human immunodeficiency virus, a measure that advocates for people with AIDS have long pushed as an alternative to coercive mandatory testing. But testing of children born to mothers whose HIV status is not known at birth would become mandatory if the number of infected children was not reduced by counseling alone by the year 2000.
Serious disagreement over the rest of the overall measure is considered unlikely and it is expected to win passage in both houses of Congress.
Although influential AIDS organizations oppose mandatory testing, they are expected to endorse the overall measure in hopes of winning repeal of the testing provisions later.
Advocates for people with AIDS attacked the mandatory testing provision, arguing that it would violate the privacy rights of pregnant women. They said the requirement would fall heaviest on poor women who are afraid to be tested for AIDS.
Among other fears, these women worry that tests showing they carry HIV might cause them to lose custody of their children or housing or other benefits, the advocates said. Also, they said, many people fear that the test results would not remain confidential.
"It is relatively horrifying," said Theresa McGovern, a lawyer and the executive director of the HIV Law Project, a Manhattan advocacy group. "I wish this kind of attention and effort had been paid to getting prevention."
Pub Date: 5/01/96