WHO'S ON FIRST

...The goal of newborn testing is to identify infection before it is too late to prevent certain consequences...

...Child advocates, reporters, doctors, mothers, and the hundreds of thousands of citizens across the country who are astounded by what we are doing here in Albany by ignoring that these babies are independent, living, breathing human beings whose right to health care is being violated...

...And I have told them that they have a patronizing attitude toward the many black and Latino women in this situation...

...The physicians in the majority point out that HIV-specialized medical care and other interventions "improve the outcome of HIV-infected children, resulting in better and longer life...

...This is the one committee in the state with direct, long-term experience treating and caring for precisely the children this debate is about...

...In New York State, that means a quarter of the 1,512 infants found positive in the blind test do have the virus that leads to AIDS...

...If the well-being of women and their children is not the concern of NOW, who will speak for them...

...Before the Assembly adjourned, she went to the floor of that institution and spoke of "powerful groups who have a determination that they own [AIDS]—and there can be no changes in health law without their approval...

...But these mothers are being sent home from the hospital without being told they're infected...

...The potential benefits to HIV-infected children, identified at birth, are sufficient to support the 'doctrine of parental override' whereby the potential benefit to the infant outweighs the mother's right to refuse consent for HIV testing...

...With counseling, it is said, new mothers will eventually be persuaded to be tested for HIV...

...Said one woman whose son has become very sick: "I should have known so I could take care of myself—and him...

...The goal of newborn testing is to identify infection before it is too late.' I he lobbyists against Mayersohn urge that there be mandatory counseling instead of mandatory HIV testing...

...That right "follows ineluctably from the sender's right to send [information...

...Mayersohn's bill would have ensured mandatory identification of HIV infants— mothers and their doctors would be told of their babies' condition, and the health department would be required to see that all such infants were treated...

...More importantly, the right to receive ideas is a necessary predicate to the recipient's meaningful exercise of his own rights of speech, press, and political freedom...

...The forces against unblinding this information often cite Harlem Hospital in New York City as a resplendent illustration that the voluntary approach—counseling—can work...

...Mayersohn, however, has by no means given up...

...A majority of the physicians on New York's Committee for the Care of Children and Adolescents with HIV Infection agree with Dr...

...But the battle will also be pursued in the courts—on the grounds of equal protection of the laws (the Fourteenth Amendment), and provisions in the Americans with Disabilities Act...

...I've heard this from gays, abortion-rights activists, and leading officials of the ACLU...

...In November, CBS Evening News did a report on the discovery that AZT, taken during pregnancy, could prevent many infants being born with the HIV virus...

...In forty-four states, the freedom to receive information is being lethally violated...

...These women do not have any political clout...

...I submit to you that our failure to pass a mandatory testing bill makes us accomplices in the cruelest and most obscene violence—the abuse and neglect of the most neglected children in our state____ "We protect newborn infants from a whole host of diseases by doing mandatory testing...

...We fight wars to preserve our freedom, knowing that a certain number of people are going to die...

...Speaking for the opposition was Dr...

...It threatens the women's interests...

...This is considered enlightened public-health policy...

...The infants are also tested for HIV infection...

...The other 25 percent, however, actually are HIV-positive...

...In constitutional law, the clearest statement of that freedom is in the 1982 Supreme Court decision Board of Education, Island Trees Union Free School District v. Pico...

...What of the mother's right not to know...

...Yet Dr...

...There is now a Republican governor of New York State, George Pataki, who, while in the State Senate, supported the Mayersohn bill...

...Let's treat this as a disease—not a political problem...

...As a result we will continue to send thousands of newborns home from the hospital to suffer the miseries of preventable opportunistic infections—and a premature death____ "Last week, with great fanfare and a slap on the back for ourselves, we passed a much-needed domestic-violence law...

...As a result, say the opponents of disclosure, the mother becomes vulnerable to discrimination and stigmatization...

...In New York, as in forty-three other states, all babies are tested to find out whether they have syphilis, hepatitis, sickle-cell anemia, and other medical conditions needing quick attention...

...Keith Krasinski at Bellevue—who works with HIV-infected children—"Every child must be identified for HIV at birth, so that he or she can be treated...

...Apersistent argument against mandatory identification of HIV infants is that the mother, if she discovers she is infected, will panic and flee the healthcare system...

...In New York, the only state where there is a public debate on this issue, the censors of life—with some internal dissenters—are gays, abortion-rights forces, and, most grotesquely, the American Civil Liberties Union...

...It's a baby, not a statistic...

...The coldness of this approach is shown in a corollary contentious issue...

...Abrams...

...Newborn children have the due-process and equal-protection-of-the-laws rights that all persons have under the Constitution...

...It is because the religious Left has declared that there is something different about the disease, and if babies have to be sacrificed on the altar of confidentiality, so be it____ "This issue will not be laid to rest here today...

...Why, then, was her bill so fiercely opposed—with considerable money spent lobbying against it—by such liberal groups as NOW, NARAL, gays, and that paladin of free expression, the ACLU...

...Philip Pizzo of the National Institutes of Health suggested that many children's lives could be saved if all pregnant women were tested for AIDS and offered the AZT...

...Macklin replied, "At a certain point, one balances freedom against lives, indeed...

...None of these opponents of disclosing the HIV results has given a single example of a mother who found out, after taking her baby home, that she and her child were HIV-infected—and then disappeared in panic...

...They have the mother's antibodies, which their own bodies throw off...

...It was a public-school-censorship case, and Justice William Brennan made the point—an obvious one, but one little noted in Court chronicles—that there is indeed a right "to receive information and ideas...

...To do less is discrimination in its cruelest form...

...Look, the New York State Health Department and the Federal Centers for Disease Control recommend that if a woman knows she is HIV-infected, she should be warned not to breast-feed her child...

...There are people who care enough to keep it alive...

...They completely dismiss the fact that there is now another human life involved whose right to medical care—and indeed to life—is being violated...

...The awful surprises experienced by them and their children are permitted, as Dwyer writes in his column, because "the black and Latino kids who die of this disease don't have the political power or money to spend on lobbyists to compete with NOW or the Gay Men's Health Crisis...

...She is so forceful a feminist that in 1989, the state's chapter of the National Organization for Women acclaimed her as the feminist legislator of the year...

...As Nettie Mayersohn makes clear, "Seventy-five percent of the newborns who are HIV-positive at birth turn out not to be HIV cases...

...Why do we not do the same for babies with AIDS...

...The child, then, is likely to be hit, within months, with devastating attacks of opportunistic infections thriving on a weakened immune system...

...So they can't be counseled beforehand...

...The mother's privacy in this context, say Mayersohn's opponents, must take precedence over the infant's fife...

...Unfortunately, Assembly Speaker Sheldon Silver, now the most powerful Democrat in the state, was the man who killed the bill last term by offering a weak alternative that impressed hardly anyone...

...The stereotype is that these women do not care as much about their children as do whites and, accordingly, would remove them from health care...

...Meanwhile, a dissident chapter of the state affiliate of the National Organization for Women—in Ulster County—supports Nettie Mayersohn and her bill, noting that "NOW should be leading the fight on this public issue...

...And those responsible for this censoring of information that would prevent deaths are not Jesse Helms or the Christian Right...

...Mayersohn's bill was killed by the State Assembly leadership in the 1994 session—with Governor Mario Cuomo cravenly staying out of the debate, although he acknowledged to Jim Dwyer of Newsday that the life of a child is more vital than even privacy...

...Accordingly, says Dr...

...His Who's on First...

...She can't evade knowing her child's HIV status because, as a number of physicians who treat youngsters with AIDS have emphasized, "Sooner or later, HIV will declare itself...

...Meanwhile, infants are dying because their parents have had their First Amendment right—to receive information—denied...

...But now, Mayersohn is a pariah among many feminists who support abortion rights, even though she is still firmly pro-choice...

...Elaine Abrams, director of Pediatric AIDS Care—including the voluntary counseling program—at Harlem Hospital, emphasizes, "I'd like to see HIV testing as routine as syphilis testing or eye drops at birth...

...It is an invasion of privacy...

...column, supported in part by a grant from the Evjue Foundation of Madison, Wisconsin, appears four times a year in The Progressive...

...Disclosing that an infant has the HIV virus means that the mother is infected and has been tested without her consent...

...Sooner or later, HIV will declare itself...

...It has been said—by me, anyway—that many bioethicists have formed a new priesthood of death...

...Jim Dwyer of Newsday has interviewed a number of black and Latino women who are furious "that they were never told that they and their infants were at grave risk...

...She became a heretic when she introduced a bill in the Assembly that would make a basic change in the testing of newborns in New York...

...Ruth Macklin, a bioethicist at the Albert Einstein College of Medicine in New York...

...First of all, a considerable number of the pregnant women at issue don't show up at a hospital until it's time to give birth...

...Nat Hentoff Censoring the Right to Live The First Amendment is usually thought of as protecting freedom of expression, but there's another dimension of its scope—the freedom to receive expression, including information...

...As for Nettie Mayersohn and her continuing fight to save lives in this war, she says, "Countless people tell me that I will be destroying the mother's privacy and also that she has the right not to know...

...The problem is that counseling has largely failed...

...The public battle began with Nettie Mayersohn, a member of the New York State Assembly...

...But the HIV results are not given to the mother or to the physician...

...Others who are in the health system are often very reluctant to be persuaded by counseling...

...After all, these are not fetuses...

...Nat Hentoff s "Free Speech for Me—But Not for Thee" was recently published in paperback by HarperCollins...

...Asked "Is freedom that important that you might allow 15,000 babies' lives to be poured down the drain...