In recent years, several New York newspapers and magazines have reported the rage and hopelessness of women, many black and Latina, who have discovered for the first time that their very young children are infected with the HIV virus.
"They should have told me," said one furious woman, "so I could have taken care of myself -- and him."
These women were subject to the state's strict confidentiality law that was part of the epidemiological test of all infants to track the geographic spread of the infection leading to AIDS. If an infant tested positive for HIV, the results were not routinely given to the mother or her doctor because of discrimination against people with AIDS. But the results of tests for other diseases were revealed.
Every year, some 1,200 to 1,400 infants test positive in New York. Seventy-five percent simply are carrying their infected mothers' antibodies and are not truly infected. But 25 percent are. Leaving the hospital without treatment, these children, their infection undisclosed, are prey to devastating opportunistic attacks on their immune systems.
And although the 75 percent are healthy when they get home, the mothers are infected, and in their lack of knowledge, they can infect the child through breast feeding.
Since May, New York hospitals have been required to at least ask new mothers if they want to be told the test results. But of 18,150 mothers surveyed in the month of May, 11,200 never answered the question, and 1,038 did not want to know.
As the number of dead and dying infants increased, a state assemblywoman, Nettie Mayersohn, tried for three years to get a bill passed requiring mandatory testing of all newborns -- with the results given to their mothers, who did not have to sign consent forms.
Mayersohn is a Democrat, a feminist and in 1989, the National Organization for Women named her legislator of the year. Since she started to spread the word of these careless deaths, Mayersohn has been bitterly opposed by the NOW, gay groups, AIDS activists, some medical organizations and the American Civil Liberties Union.
They charge that mandatory testing of infants -- which reveals that the mothers are infected -- is a violation of privacy. Also, they say, forced testing would lead mothers to flee the health care system. There is no evidence of that, but there is growing evidence of mothers cursing the ignorance in which they were kept for their "protection."
The ACLU and others demand that mothers be counseled to take the test voluntarily. That approach has had only scattered success in New York. Moreover, many poor women do not get to a hospital before giving birth, so they get no prenatal counseling.
Nettie Mayersohn never gave up. (This lethal secrecy, it should be noted, has also been going on in many other states, but the story made news only in New York because of Mayersohn.) "I got up with it in the morning," she told me, "and I went to sleep with it."
At last, in June, Nettie Mayersohn's bill passed both houses and was signed by Gov. George Pataki. In the assembly, she was given a standing ovation.
The new law was the first in the country to require mandatory testing of all newborns -- and disclosure of the results to the mothers. (A bill passed by Congress earlier this year had many preliminary stages and did not kick in until the year 2000.)
"Every infected HIV baby," Nettie Mayersohn says, "will finally be able to access health care and treatment that really can prolong and enhance their lives. And under my law, infants who are not infected will be protected from getting infected through breast feeding." And if treatment is early enough, an infant with the virus may be able to escape AIDS.
Since infected newborns now will qualify for the quality of treatment that adults with AIDS rightfully demand, one would think that AIDS activists would have fought for the infected infants all along. But they have not.
At the end of June, the American Medical Association endorsed mandatory testing throughout the country of all newborns for the AIDS virus -- as well as all pregnant women because it has been established that pregnant women who are tested and treated cut the risk to the unborn child by two-thirds.
Meanwhile, the ACLU has expressed no regrets to certain grieving mothers. But as one of the mothers put it, "We should not have been protected to death."