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Privacy That Kills

Original Article

ON THE FACE OF IT, representative Tom Coburn and New York assemblywoman Nettie Mayersohn are mirror opposites: He’s a staunch Republican, she’s a fiery Democrat; he’s pro-life, she’s pro-choice; he’s socially conservative, she’s a booster of gay rights; he’s a fundamentalist Christian, she’s Jewish; he’s Oklahoma, she’s pure Queens. But across this yawning political and cultural divide, the two have embraced as allies to promote their common passion — saving new born babies from AIDS.

A committed feminist who received the New York State National Organization for Women Legislator of the Year Award in 1989, Mayersohn saw praise from the liberal establishment turn to vituperation when she introduced legislation in 1994 requiring HIV testing of all New York newborns and disclosure of the results to mothers of babies who tested positive for the HIV antibody.

It’s not as if newborns weren’t already being tested. They were — for statistical purposes and to track the course of the epidemic, which revealed that about 1,800 New York State babies were born HIV-positive every year. Between 70 percent and 80 percent of these babies were not actually infected but only tested positive for the antibody. Assuming proper medical treatment and no further exposure to the HIV virus — say, by nursing at their mother’s breasts — most of these babies would not become ill. The other 20 percent to 30 percent actually had AIDS, but quick treatment could extend both the quality and duration of their lives. Unfortunately, strict confidentiality rules enacted at the behest of AIDS activists who fetishize “privacy” meant that mothers could not be informed about their babies’ HIV status unless they asked.

Logic, compassion, and a decent regard for the value of these infants’ lives (not to mention the lives of the mothers) would seem to dictate public health policies along the lines that Mayersohn proposed. Infected infants should be identified as soon as possible. At that point, they can be treated either to prevent HIV infection or ward off the onset of AIDS. Perhaps more important, once mothers are advised of their infants’ HIV status, they can avoid exposing their children to their own body fluids. Unfortunately, logic and true compassion have little to do with much of AIDS public policy.

The fight over Mayersohn’s “Baby AIDS” bill was a real donnybrook. Movement feminists, gay activists, ACLU types, some physicians, and legislative colleagues unleashed a near-hysterical hue and cry. Mayersohn became a pariah, turned on angrily by former political allies and friends. “After I introduced the legislation, all hell broke loose,” Mayersohn recalls. “On World AIDS Day, I had about 50 activists at my apartment building demonstrating at mid-night, going on the intercom demanding to meet. The group’s name was Fed Up Queers and they thought that kind of intimidation would be effective in deterring me from doing what I thought was right. They were wrong.”

Even more astounding to Mayersohn was the illogic of her opponents’ arguments and their skewed priorities: “I was visited by the Gay Men’s Health Crisis and they asked me to withdraw the legislation. I said to them, ‘Your community has been so devastated by the disease; so many young lives have been lost. Why wouldn’t you support this?’ And they said, ‘Privacy is our main concern.'”

“Then I met with the feminists. I asked them to support my bill. I said, ‘This is a woman’s bill.’ Their response knocked my socks off. They said, ‘Well, Nettie, think of the potential for domestic violence the bill will be generating if a guy finds out [his partner’s] infected. This is a domestic violence issue.'”

“I said, ‘The real violence is getting infected!’ If I am in a bad marriage or abusive relationship, I can do something about it. I can get myself out. I can repair a broken jaw. But if someone infects me with HIV, that will mean the end of my life. So, the feminists turned on me. They cared more about politics than fighting disease. I don’t understand that kind of mentality.” Diane Welsh, president of NOW-NYC, typified the response of movement feminists. She denounced Mayersohn’s bill as part of “the erosion of a woman’s fundamental right to control over her body” and of “a general backlash against women’s rights.”

Media feminists joined the fray. “What about the mothers?” demanded Anna Quindlen, then a political columnist for the New York Times. Rather than support mandatory testing and disclosure, Quindlen proposed, ironically, that pregnant women undergo “mandatory counseling” to induce them to be voluntarily tested. Meanwhile, Richard Gottfried, chairman of the New York Assembly’s health committee and an ally of feminists and the AIDS lobby, whined, “If these babies could talk, they’d beg us to protect them by working carefully with their mothers, not by disregarding them.”

The local chapter of NARAL — the National Abortion and Reproductive Rights Action League — had a similar case of the vapors, claiming that testing might “force many women and children out of the health care system entirely.” Most appalling, New York NARAL’s president called it a “great cause for alarm” that “the interests of newborns were willingly deemed more important than those of women.”

Mayersohn fought back. “The real bias,” she wrote to the Village Voice, “is the failure to even consider that the real discrimination faced by infected individuals is the discrimination against newborns who test positive for the virus at birth. Unlike children suffering from other diseases for which the state routinely tests at birth, such as syphilis, sickle cell, and hepatitis, children born with the HIV antibody are routinely denied an opportunity to receive treatment because of our strict adherence to a warped definition of confidentiality that says we cannot tell a mother that she is infected and that her child is at risk.”

Slowly, though, the tide turned away from political correctness and toward protecting the lives of new-borns exposed to HIV. After a three-year struggle, Mayersohn’s legislation passed in June 1996. New York became the first state to require that all newborn infants be tested for HIV and to disclose the results of the testing to the mothers.

Today, the law is working well and saving lives. According to the New York Department of Health, prior to the “Baby AIDS” law about 59 percent of infants with HIV went home from the hospital unidentified to their mothers as having tested positive. By the time of a study published on November 3, 1997, a magnificent 98.8 percent of HIV-exposed infants were being identified and receiving follow-up care.

Mayersohn is thrilled. “With the law, women are coming in,” she told me. “They are getting tested; their babies are getting tested. They are not giving birth in the street. They are not jumping off the roof if they are told their babies are HIV-positive. All of these so-called experts and witnesses with alphabet soup after their names who opposed the bill were wrong.”

With New York clearly demonstrating that mandatory testing of newborns saves lives without endangering women, the argument should have been settled. But opponents are so steeped in ideology that facts don’t matter. So, now it is Coburn’s turn to be skewered and roasted over the open flame of vituperation for trying to protect the nation’s babies as Mayersohn did New York’s.

For five years, Coburn and New York Democrat Gary Ackerman have attempted to pass a New York-style Baby AIDS bill through Congress. They succeeded in 1996, only to have the bill die an ignoble death in a House-Senate conference committee. Frustrated by their inability to break through the AIDS lobby roadblock, they are back this year with a watered down version, the Women’s and Children’s HIV Protection Act.

The bill does not require testing. It would merely stiffen the backbones of lawmakers in the 48 states that do not have some form of mandatory testing and identification of infants who test positive for HIV by making those states that fail to pass such laws ineligible for certain AIDS-related federal funding. If Mayersohn could be cloned, the legislation might not be necessary. But given that most legislators are loath to subject themselves to the howling abuse of the AIDS lobby and its allies, a federal courage pill is just what the doctor ordered.

The bill, which would be an amendment to the reauthorization of the Ryan White CARE Act, faces such hysterical opposition that activists threaten to doom Ryan White funding itself rather than permit a federal Baby AIDS bill to become law. Talk about misplaced priorities: These activists would rather see babies die a horrible death in early childhood from AIDS and their states lose desperately needed federal funding than permit the enactment of a public health measure that defies their ideological agenda. “Their belief,” says a Coburn aide, “is that if we mandate testing of any segment of society, including infants, we are starting down the path to mandatory testing for everyone.”

Mayersohn, a strong supporter of the Coburn/Ackerman legislation, is appalled that AIDS activists seem to have learned nothing from her work: “It is infuriating that AIDS activists are able to thwart national legislation that would promote the kinds of policies that are doing so much good in New York.”

Mayersohn is right. The United States is uniquely capable of grappling with the AIDS catastrophe both at home and abroad. But how can we presume to lead the world if we permit ideologues who are blinded by paranoia to thwart the implementation of medical protocols that would do so much to save or improve the lives of AIDS’ youngest victims?