Wall Street Journal - October 25, 1995
Helen Mathews Smith

For more than a decade, bowing to narrow interests, American public health officials have ignored the central tenets of plague control: routine testing, tracking the path of the disease, and warnings to those at risk. Because HIV infection has been given a unique legal and medical status, says Denver's director of public health, Franklyn Judson, "we have gotten off track" with a national strategy that is "irrational, erroneous and unethical."

How did the nation's public health system fail? An early preview of the coming crisis occurred at the Atlanta meeting held by the Centers for Disease Control and Prevention in February 1987 to examine the future role of HIV testing. The two-day conference was attended by 800 people, including health officials and representatives of the American Civil Liberties Union, the Gay Men's Health Crisis, the National Gay and Lesbian Task Force, and the American Association of Physicians for Human Rights.

To track the path of the epidemic nationwide, the CDC proposed testing new groups, including pregnant women, marriage license applicants and hospital patients. AIDS activists strongly opposed the new strategy as a slippery slope toward detention camps. They argued that wider testing was unnecessary, expensive, and raised civil rights issues that would have to be resolved. They advocated instead more counseling and a mass-education campaign targeted to the general public. For teenagers, they recommended candid discussions of sex and condoms; for drug addicts, needle exchange programs.

In the end, the medical establishment voted for individual rights over public health. "The need for legislation to protect the rights of AIDS victims was endorsed by everyone present," wrote a New York Times reporter, "from dark-suited federal officials to jeans-clad advocates of homosexual rights." This was a radical departure from public health principles. Exactly 50 years earlier, President Roosevelt's surgeon general began a campaign against syphilis that advocated the opposite strategy. He organized an aggressive testing and partner notification system -- before the discovery of penicillin -- that brought the infant and adult epidemic under control.

A few months after the 1987 conference, the CDC offered two minor concessions to public health tradition: It recommended that high-risk groups be "encouraged" to take the HIV test, but warned that individuals should not be tested unless they had received "appropriate counseling" and given consent. People have "a right to choose not to be tested," said the CDC, and counseling should be "non-judgmental."

Voluntary testing, however, created major problems for the CDC. Because HIV infection can take as long as a decade to mature into full-blown AIDS, the number of AIDS cases told the agency where the epidemic had been 10 years ago -- not where it was going. To fill the data hole, the CDC financed studies at methadone and venereal disease clinics, as well as an anonymous study of 44 states and the District of Columbia to track the epidemic.

I recently met Isabel Argueta and her three-year-old son, Jonathan, one of the subjects of the 44-state survey. These two victims of America's failed war on AIDS were at the Incarnation Children's Center, an 18-bed AIDS hospice and clinic in Harlem. When Jonathan was eight months old, he became deathly ill with pneumocystis carinii pneumonia, and it was only then that Ms. Argueta discovered that they were both HIV-positive. Ms. Argueta says Jonathan's father, now dying of AIDS in Central America, was bisexual and involved with drugs. If he was tested for HIV, he never told her. She says that neither before nor during her pregnancy was she asked to take an HIV test.

Jonathan, however, was not totally lost to government epidemiologists. On the day of his birth -- July 29, 1992 -- he became a case number in the CDC's anonymous survey. The founding director of the Incarnation Children's Center, Stephen Nicholas, shakes his head in dismay. If they are diagnosed at birth, Dr. Nicholas says, "HIV babies can have longer, higher-quality lives. For over a decade, I have witnessed grief-stricken mothers and fathers learn of their own HIV infections as their baby lay dying in their arms from a preventable pneumonia. Those opposed to testing pregnant women and infants say the stress of knowing the truth is too much for them. Is there less stress in seeing your three-month-old child die?"

The director of research at the Pediatric AIDS Foundation in Novato, Calif., Arthur Ammann, says that "once treatment for HIV-infected babies was available in the late 1980s, anonymous testing by the CDC should have been abandoned immediately, and all those infected identified." And when it was discovered in 1994 that the drug AZT could prevent the transmission of AIDS from an infected mother to her child there was, he says, another reason "to change the rules." No infant, he adds, "would refuse a treatment capable of turning the risk of dying from a prolonged and painful disease into one of a normal life, but that is precisely the problem: Infants cannot be asked."

Dr. Ammann has compared the CDC's anonymous testing of infants to the notorious Tuskegee study that followed 400 black Alabama sharecroppers infected with syphilis to study the disease's progression. Begun in the early 1930s, the Tuskegee "experiment," financed by the Public Health Service, should have been abandoned when penicillin became available in the 1940s. It was not -- until 1972. The same liberal groups that defended exploited sharecroppers are silent on the subject of AIDS research upon infants. The drugs are different, but the moral issue is the same.

In 1993, Nettie Mayersohn, a Democratic Assemblywoman from Queens, embarked on a personal crusade to get HIV-infected infants identified and treated. She proposed a bill in the New York State Assembly that would unblind the CDC study, and make notification of the infant's mother mandatory. But her bill has been blocked by the Democratic leadership of the Assembly ever since. AIDS activists and feminist groups are vehemently opposed to it, and the bill has sharply divided the medical community.

This year, a Newborn HIV Notification Act modeled after the Mayersohn bill and sponsored by New York Democrat Gary Ackerman and Oklahoma Republican Tom Coburn, a physician, passed the House. A watered-down version passed the Senate, and the bill is now in conference committee.

Recently, the CDC published its recommendations for the testing of pregnant women -- returning to a position it briefly held in the winter of 1986. "Because of advances, particularly in the use of AZT to prevent newborn AIDS," the guidelines recommended "routine HIV counseling and voluntary testing for all pregnant women." The phrase "voluntary testing" makes it clear that the agency is still stuck in the murky politics of the 1987 Atlanta meeting.

Some progress has been made, though: Instead of testing just high-risk women, the CDC now recommends that "all" pregnant women should be tested. (And early this month, as part of a legal settlement, New York Gov. George Pataki announced that he would unblind the New York infant AIDS test and make the results available to mothers who request them.) But the CDC still refuses to pose -- let alone answer -- the fundamental question: Can the nation continue to depend upon voluntary testing to bring this deadly epidemic under control?

In 1987, women represented 4% of AIDS cases; today they are almost 20%. Last year, 8,000 infants were born to HIV-infected mothers. Of the estimated 1.3 million HIV-infected Americans, fewer than half have been tested. Sanford F. Kuvin, the vice chairman of the National Foundation for Infectious Diseases, says: "We have been betting on the wrong horse for 14 years; 100,000 women of child-bearing age are infected, and clearly CDC voluntarism has failed. All pregnant women should be mandatorily tested for HIV, have mandatory counseling, and -- if positive -- be offered AZT during pregnancy."

Denver's Dr. Judson says that in his city, "the HIV test has been routinely offered to everyone at risk since the mid-1980s. We have had 5,000 cases of AIDS, and 3,000 deaths, but no one has lost their confidentiality because of the public health department." The basic goals of HIV testing are surveillance and reporting, adds Dr. Judson, but we also have a duty to warn the uninfected and to break the chain of transmission that keeps the epidemic alive. Two states that began routine HIV testing and reporting a decade ago -- Colorado and Minnesota -- remain today state models of disease control, common sense and compassion.

Would routine or mandatory testing nationwide bring an end to the epidemic? No one can know. But at the very least, thousands of lives would be saved. The nation has a moral duty to care for those who are infected, but the infected also have a responsibility to those with whom they share their lives -- and bodies. Public health officials once enforced that responsibility. They need to do so again.

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Ms. Smith, the former editor of MD magazine, is writing a book on the HIV/AIDS epidemic. A longer version of this article appears in The Women's Quarterly, published by the Independent Women's Forum.
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