By Nat Hentoff,* Newspaper Enterprise Assn.
November-December 1994 – In 44 states, all infants are tested at birth for the presence of the HIV virus. In these 44 states, if the infant does test positive, neither the parents nor the baby’s physician is informed. These are blind tests intended only to track the AIDS epidemic geographically.
Some 75% of the infants initially shown to be positive actually do not have HIV. They carry their mother’s antibodies, which they eventually throw off. The others, however, are infected. These infants are taken home in apparently good health, but since their parents are ignorant of the baby’s medical status, no preventive treatment is given to ward off such devastating attacks on weakened immune systems as PCP pneumonia, which has a peak incidence at six months after birth.
On the other hand, newborns are tested for hepatitis, sickle-cell anemia, syphilis and other conditions; and the mothers are informed of those test results. Why is the HIV test blinded? Over the years, gay organizations, the National Organization for Women, the National Abortion Rights Action League and the American Civil Liberties Union have made this a political rather than a medical issue. Since identifying the HIV status of the infant also discloses that the mother is infected, the privacy of the mother takes precedence over the life of the infant.
This is an especially unconscionable position for the ACLU to take because it amounts to “civil liberties” triage. As a New York mother, at first unaware that her infant was infected, says: “They are sacrificing infants on the altar of confidentiality.” Her child is dying of AIDS.
The opponents of unblinding the tests say that if the mothers are told they and the child are infected, they will flee the health care system in panic with their children. New York Gov. Mario Cuomo takes this position but admits that it is speculative, that he has no clear evidence to back this grim hypothesis. This essentially is a patronizing attitude, based on the belief that some mothers, particularly the poor black and Latino women who are most affected in some areas, do not care as much about their children as middle-class parents do.
I have talked to physicians who deliver the children of poor mothers, and they strongly disagree with Cuomo. Dr. Keith Krasinski of the Bellevue Hospital Center insists that the tests be unblinded so that every child who is HIV positive can be identified and treated. The present situation, he says, “is discrimination in its cruelest form.”
In only one state, New York, is there a fierce continuing battle over this terminal discrimination although the legislature and the governor keep failing to act for the infants in fear of political reprisals. In the other 43 states, as I keep finding out in my travels, there are no protests because hardly anyone knows that this blind testing is going on.
Finally, Congress is being asked to act on a bill that will pre-empt any such practices by the states. In the House, Gary Ackerman, D-NY, has introduced H.R. 4507, the “Newborn Infant Notification Act.”
In a Dear Colleague letter to other members, Ackerman says: “Babies are being denied the appropriate medical care that effectively prevents the contraction of deadly HIV infections.... Until Congress corrects this policy... mothers will continue to breast feed, and unknowingly put the child at great risk. By allowing mothers to leave the hospital uninformed that their baby is HIV positive, we are condemning thousands of helpless babies to an early, harsh death.”
The bill, Ackerman adds, “says that in those states that already require testing of newborns for HIV,” the results shall be disclosed promptly to the mother or legal guardian.
Ackerman’s bill also provides that “in disclosing test results... the state shall ensure that appropriate counseling on the human immunodeficiency virus is provided.”
Among the co-sponsors of the bill so far are Charles Rangel, D-NY, Major Owens, D-NY, and in a rather startling burst of ecumenism, Eleanor Holmes Norton, D-Delegate from the District of Columbia, and Robert Dornan, R-CA.
In New York’s Ulster County, a dissident chapter of the National Organization for Women strongly urges the unblinding of the HIV test. Carol Urban, reproductive health chairwoman of the chapter, says: “If the well-being of women and their children is not the concern of NOW, who will speak for them?”
Since Gov. Cuomo will not, how about the United States Congress?
How long will children continue to be caught in this political crossfire between adults’ right to privacy and these children’s right to live? 
* Nat Hentoff is a syndicated columnist who frequently writes on the First Amendment.
