Drs. Ram Yogev and Patricia Garcia have much in common with Bernard Rieux, the physician and secular saint of Camus’ The Plague. Yogev, director of the Section of Pediatric and Maternal HIV Infection at Children’s Memorial Hospital, and Garcia, director of the Women’s Program of the HIV Center at Northwestern Memorial Hospital, must daily roll up their sleeves and battle despair as the infection rate in the populations they serve continues to climb, and the ignorance and misunderstanding of self-appointed experts flows unabated. Ten years ago women made up only 6 percent of reported HIV infected persons in the country; today the figure is 18 percent. Of those women, over three-quarters are African American or Latina–a particularly sobering statistic considering that African Americans and Latinas represent only 20 percent of U.S. women. The Centers for Disease Control and Prevention (CDC) say that by the year 2000 AIDS will be the number-two killer of women between the ages of 18 and 44. Given the dismal record of government-funded preventive education directed toward women, as well as the current lack of access to health care faced by so many poor women of color, no one realistically expects that the percentage will drop any time in the near future.
In such desperate times, Garcia and Yogev are an invaluable team. They run a joint clinic out of Children’s Memorial providing comprehensive care to families affected by HIV. “I deliver the babies that he then treats,” Garcia says. “We attend the same scientific meetings. We have the same drive and desire to be a part of making things better for the families we deal with.” They even live across the street from each other.
But a major political feud, revolving this spring around Oak Lawn state representative Maureen Murphy’s highly controversial House Bill 1314, almost drove a wedge between the two. Introduced on February 15 by Murphy and three other sponsors (Eileen Lyons, Anne Zickus, and Cal Skinner), the bill read in its original form: “Each physician providing prenatal care shall test all pregnant women in his or her care for Human Immunodeficiency Virus (HIV)” (late amendments wisely granted women more autonomy). Whether you call the test “mandatory,” as Garcia does, “routine,” as Yogev does, or a “screening,” as the bill does, the reality is the same: pregnant women were expected to join the dubious ranks of prisoners and convicted sex offenders as the only Illinois citizens who could be routinely tested for HIV without their written informed consent. House Bill 1314 is named for Maureen and Andrew Baron: Andrew was a southwest-suburban six-year-old who died as a result of HIV infection received perinatally; his mother is Maureen Baron. Yogev was Andrew’s physician, and Garcia was Maureen’s.
Legally mandated HIV testing of pregnant women is anathema to Garcia, an insult to and attack on the kind of trust she thinks necessary in doctor-patient relations to ensure adequate care. To Yogev such a test is an important tool, a necessary first step in identifying the need for medical intervention. But the discord between the two has remained civil and professional.
“I have no pressure to bear on Ram or anyone else at Children’s,” Garcia says calmly. “I’m just trying to get him to understand from the perspective of a woman and a mother.”
Yogev–who describes Garcia as “one of the few saints of the epidemic”–is uncharacteristically tight-lipped about their strained relationship. “I have some . . . issues with her,” he admits.
In the weeks following the introduction of HB 1314, amid a flurry of emergency meetings, position statements, and vitriolic rhetoric in the AIDS service community, Garcia and Yogev emerged as the most articulate, authoritative voices on the issue. Ultimately, on March 8, they would sit at opposing tables in room 118 of the capitol building in Springfield, the star witnesses before the House Health Care and Human Services Committee in a morning of testimony by turns contentious, eloquent, and outrageous.
The introduction of HB 1314 came as no great surprise to those of us working in the AIDS service community. Various calls for mandated HIV testing, granted varying degrees of attention by an unpredictable press, have surfaced around the country ever since the epidemic began. Almost every paper in town eventually ran a story about the wasteful, misdirected 1987 law (repealed in 1989) that required HIV tests for Illinois residents applying for marriage licenses. But few seem aware that Representative Robert Biggins introduced a similar legislative gem just last month (though wisely he never called it to a vote). Reporters jumped all over Alderman James Laski’s 1994 proposed ordinance requiring annual HIV tests for all Chicago waiters, cooks, swimming pool attendants, and health club employees, among others. But nobody much noticed U.S. Congressman Dan Burton’s 1987 bill that proposed mandatory annual HIV tests for every man, woman, and child in the country.
Such initiatives failed in large part because their punitive agendas patently overshadowed any claims made in the name of public health. It was impossible to justify rounding up huge numbers of people and testing them for something that couldn’t be cured, and for which standard medical treatment included the administration of some of the most toxic and expensive drugs ever devised–assuming, of course, that those infected could find competent doctors willing to touch them. (The AIDS division of the New York City Commission on Human Rights found that two-thirds of the clinics and private doctors surveyed would not keep their appointments once the caller identified her serostatus.) Given this climate, the real intent behind such legislation was clear: we don’t want to help you, we just want to know who you are.
But last summer the calls for mandatory testing rang out once again, aimed this time at pregnant women and voiced in the name of their unborn babies. The clamor arose when the National Institutes of Health released the results of their now-famous 076 trial. Begun in the spring of 1991 and involving some 50 research hospitals in the United States and France, 076 showed that AZT could dramatically reduce the rate of perinatal HIV infection. Although no one seems absolutely sure how such transmission occurs–it could be in utero, it could be during passage through the birth canal–medical experts have agreed for years that an HIV positive woman in this country has approximately a 25 percent chance of giving birth to an HIV positive baby. The 076 trial confirmed this estimate: 26 percent of the babies born to women given placebos were HIV-infected. However, when women were given five daily doses of AZT late in pregnancy and received the drug intravenously during labor, and when their babies were given AZT syrup every six hours during the first six months of life, the transmission rate dropped to only 8 percent. Somehow the introduction of AZT cut the perinatal transmission rate by two-thirds, a result so significant that researchers stopped 076 early in order to give AZT to all the women enrolled.
Predictably, the news compelled a strident minority of health-care professionals, legislators, and journalists to line up and insist that all pregnant women be tested for HIV–not, mind you, that they should be informed about the possible benefits of AZT to their unborn child or guaranteed access to the drug should they elect to take it. Despite federal guidelines that urged physicians to counsel women on the 076 results but saw mandatory testing as counterproductive (a sentiment echoed by the American Medical Association), calls for forced testing continued. The tacit assumption of alarmists was that women couldn’t be counted on to decide to be tested themselves. Art Caplan, director of the Center for Bioethics at the University of Pennsylvania, disguised his disregard for a woman’s autonomy in the language of a doting grandparent. “Babies cannot protect themselves from AIDS,” Caplan wrote in the Detroit Free Press last July. “If, by testing a pregnant mom, it is possible to give her a drug that poses no risk to her but can save her baby suffering and perhaps a premature death, then the right to choose treatment must yield to the best interest of the baby.” Caplan apparently imagines AZT to be a beneficent angel sent down from the hallowed heights of Burroughs Wellcome, the pharmaceutical company that produces it, when in fact the drug has long been known to cause intolerable anemia in many who take it. He also seems unaware of the quick tolerance most people develop to AZT; if a pregnant woman takes AZT for the sake of her unborn child at a time when the drug is not indicated for her own health, it’s much less likely to be effective when she actually needs it.
On the morning of Friday, March 3–the day after Roy Baron, Maureen’s husband, had testified before the Health Care and Human Services Committee–the mood at the AIDS Foundation of Chicago was cautiously pessimistic at best. Spirits had been high a week before, when the Illinois State Medical Society, one of the most powerful lobbying presences in Springfield, came out against the bill (perhaps trying to atone for its current support for the mandatory reporting of all HIV positive individuals by name to the Department of Health).”The bill may be dead,” Michelle Mascaro, policy associate for the AFC, had told me enthusiastically. But now the bill’s passage seemed as imminent as Christmas decorations on the day after Thanksgiving: Baron, the only one to testify that day, reportedly had had everyone weeping. “Mr. Baron’s tragedy is very real,” Mascaro told me, “but I don’t know what it has to do with the legislative process.” A second day of testimony was scheduled for Wednesday, March 8, and to the great alarm and dismay of most AIDS service providers, Dr. Yogev–smart, articulate, and well-respected–planned to testify in favor of the bill. Dr. Garcia was testifying on the other side.
Missing from the publicly expressed support of HB 1314 was any serious consideration of the pregnant woman’s point of view. “This isn’t about women at all,” Mascaro lamented. “This is about fetuses. The attitude is, If we’re going to have orphans, we might as well have healthy orphans.” I thought that surely someone who supported the bill could offer a broader perspective, maybe even justify such draconian measures.
It’s hard to find a figure in the AIDS service community more enthusiastically praised and vehemently vilified, often by the same people, than Dr. Yogev. While the tape recorder spins, they’ll say Yogev is a dedicated physician, a tireless professional committed to adequate care for his patients. Once the tape recorder is off, however, he becomes a right-wing extremist following his own twisted logic, “myopically focused” on children to the detriment of their mothers. His single-minded insistence on mandatory testing is “incessant craziness,” they say. “He thinks he’s a god,” one colleague said bitterly. “He thinks he can tell everyone what to do.”
Yogev–a warm, gregarious man with the charm of an aging screen idol and the enthusiasm of a teenager given the car keys for the weekend–hears the sentiments of his detractors with painful clarity. “Unfortunately, the minute you say you are for routine testing, people don’t stop and listen to what you want to do with it,” he explains in his cramped third-floor office across the street from Children’s Memorial. “Colleagues of mine in this competitive field who don’t always have the good of humanity in mind are using this as a tool.”
Yogev’s purported myopia seems to be a case of bad PR: he stresses the clinic’s philosophy of treating the entire family, not just the child. And his claim to provide a “multidisciplinary approach” is supported by the fact that pediatricians, social workers, developmental psychologists, internists, and speech therapists all work together at his clinic. Speech therapists, he recently learned, are the best people to train children how to swallow. “Who knew?” he laughs. “If you keep an open mind . . . ”
But Yogev doesn’t stop long to congratulate himself. “We have failed at this point,” he explains, “because unfortunately most of the women don’t care about themselves as much as they should,” which causes them to avoid prenatal care in the first place. Yogev crusaded a few years ago to fund positions for a gynecologist and an internist at the clinic to provide general health care to the women as women, not simply as mothers. “I was running around, knocking on doors, kicking all my doctor friends,” he says, “and we were able to raise thousands of dollars to support those positions.”
If Yogev is the right-wing zealot his detractors make him out to be, he does an expert job of concealing it. Rather, he seems deeply troubled, caught in an ethically ambiguous position. “We’re doing wrong by taking away the right of the woman to make the decision, yes or no, to have the test,” he admits. “But we’ve reached a point in my personal book of ethics where there is more good that outweighs the bad I’m doing.” The good Yogev foresees is twofold. First, routine testing affords the opportunity to provide early intervention to HIV positive pregnant women. “As a physician,” he explains, “I need to identify that person as early as possible to then work with the person, connect her with the experts.” Second, of course, is the potential for AZT to reduce the risk of HIV transmission to her baby. “In treating pregnant women,” he says, “we’re dealing with two human beings.”
“That’s a very dangerous position to take,” responds Susan Curry, executive director of the AIDS Legal Council of Chicago. “If you call a fetus a person, then arguably every pregnant HIV positive woman in Illinois is a felon.” Her reasoning hinges on Illinois’ controversial criminal-transmission-of-HIV statute, which says that “a person commits criminal transmission of HIV when he or she, knowing that he or she is infected with HIV . . . engages in intimate contact with another.” The statute defines “intimate contact” as “the exposure of the body of one person to the bodily fluid of another person in a manner that could result in the transmission of HIV [emphasis added].” It goes on to say, “Nothing in this Section shall be construed to require that an infection with HIV has occurred in order for a person to have committed criminal transmission of HIV.” Fortunately for all HIV positive pregnant women, the law currently does not recognize a fetus as a person. “The unborn have never been recognized as persons in the whole sense,” Supreme Court Justice John Paul Stevens wrote in 1992. “Indeed, no member of this court has ever questioned this fundamental proposition.” Yogev wisely does not dwell on the issue of fetal rights, except to say that he is not pro-life “in any way, shape, or form. I am for a woman’s choice, but with proper understanding.”
“Proper understanding” for the patient could be Yogev’s mantra when discussing HB 1314. “The bill is wrong in mandating counseling and information about AZT at the time when the test results are given,” he explains. “No woman, no human being, can listen at that time rationally.” Yogev outlines his version of how the bill should read, most of it centered around appropriate counseling and access to care. “The bill says that the physician has to counsel the woman,” he begins. “That is absolutely incorrect. Because of fear, ignorance, or lack of time, a physician is not going to do a good job. Especially in this new era when a physician has to see more patients to make the same amount of money. The time is not there.”
In Yogev’s experience, it’s not only fear and ignorance that interfere with proper health care but plain old incompetence. Medical standards for years have required that an initial HIV test, known as an ELISA, be confirmed by a second, more sensitive test known as a Western blot. “In the last couple of years,” he says, “I have had half a dozen patients sent to me as positive because their physicians were not even aware that the ELISA can be false positive in a population of low HIV prevalence. So I’ve got somebody terrified for no reason.” In fact public health-care providers are doing better at HIV counseling than private health-care professionals: a survey conducted by the CDC and published in March showed that an average of 61 percent of clients received counseling from public health-care facilities, while the figure was only 28 percent for those receiving private care.
“The only way I can see around [doctors’ ignorance and lack of time] is if you force the physician, by law, to contact the Board of Health, or whatever agency we decide is the appropriate agency, to counsel that woman. And not once but two, three, four times, to build some trust with that unfortunate woman.” In Yogev’s vision, this agency would then be mandated to connect the woman to an appropriate primary-care facility. But Yogev’s vision didn’t fit with HB 1314 at the time, making his repeated declarations of support confusing at best.
Most supporters of HB 1314, including Yogev, generally discuss only the risk of perinatal transmission. But what of the risks for the woman, the social stigma and discrimination she faces when she discovers she’s HIV positive (factors Yogev did ultimately acknowledge in his testimony)? What of the risk of losing her job, her insurance, and the support of a frightened family? And perhaps most important, what of the risk that the very doctor who delivers the devastating news will turn his back on her at the time she needs him most?
In my three and a half years as case manager at the AIDS Legal Council of Chicago I’ve received many disturbing calls from HIV positive people denied everything from routine services to sorely needed medical help. One woman went to a Chicago emergency room with a high fever, severe body aches, and a wracking cough. After informing the staff that she was HIV positive, she was given a hospital gown and placed on a gurney in a hallway, where she lay unattended for four hours. She never was attended: finally a nurse came over and told her she could go home, that she didn’t need to see a doctor. For some reason neither of us could understand the hospital kept her clothing, so she was sent away wearing only a hospital gown. Fortunately a good-hearted cabdriver took her home for free. A few days later she went to see her regular physician, who immediately admitted her to the hospital with an advanced case of pneumonia.
“But what is better: to be rejected from your job, or life without infection?” Yogev asks in response. “I’m overdoing it a bit [in simplifying the comparison], but I’m talking about 1,300 children around the nation every year born without the disease.”
Of course, 1,300 is a figure based on a best-case scenario. The 076 trial enrolled women who were AZT naive, who had never taken the drug, so the amount of virus in their bloodstream was in all likelihood quite high. The introduction of AZT into their systems greatly reduced that viral load, explaining in part the success of 076, according to Garcia. “Unfortunately,” she adds, “increasing numbers of women who are becoming pregnant are already on AZT. So what we have to offer them, outside of clinical studies [that might help them], is absolutely nothing.”
Why not mandate appropriate counseling to women, as the AMA, CDC, and American College of Obstetrics and Gynecology all recommend? Yogev responds, “We would have to find the mechanism, the time, the money, and hopefully the enthusiasm in physicians and agencies to go and talk to 195,000 pregnant women in Illinois just to find the 300 infected women we need to talk to.”
Yogev’s argument for routine testing is framed within the classic public-health debate: private interests versus the public good. “We’ve reached the point where we can’t keep our heads in the sand anymore,” he concludes, “because the benefit of knowing who is HIV infected outweighs this unfortunate action we have to take.”
“There should be no discussion of balancing competing interests,” the quiet, unassuming Garcia declares. “Because in fact there are no competing interests. There is only one interest, and that is to prevent women and children from getting infected. When we begin to talk about perinatal transmission of AIDS, what gets left out of the discussion is prevention of HIV infection in women. We probably will never have a magic bullet to prevent pediatric AIDS. Therefore our real hope is in preventing women from getting infected in the first place.”
On March 7, the day before she is scheduled to testify in Springfield, Garcia seems to harbor great reservations about her chances of persuading lawmakers to kill HB 1314 and legislate instead greater access to care and counseling. “I’ll tell you,” she says, “the longer I go in this, the less hope I have.”
But at the mention of Yogev’s assertion that he needs to counsel only the 300 HIV-infected women from the 195,000 women who get pregnant each year in Illinois, Garcia bristles. “That depends on your perspective,” she counters. “If all you’re trying to accomplish is to prevent those women who are infected and pregnant from having an infected baby, rather than looking at the larger picture of preventing infection in women, then you might say that. But I think we need to talk to all 195,000 to help them understand how to reduce their risk and prevent infection. And not just infection of HIV, but of chlamydia, gonorrhea, herpes, and other STD pathogens that impact perinatal outcome as well.” Garcia, who has a master’s in public health as well as an MD, repeatedly stresses the importance of creating sound public-health policies that target the problems of women, not just unborn babies. The keys for her are seeing the big picture and ensuring the most good for the most people.
“The true problem,” she says, “is not women refusing testing, it’s women not being offered testing.” She cites a study conducted by her own clinic at Northwestern focusing on missed opportunities for diagnosing HIV positive women. During the 12 months prior to diagnosis, 60 to 70 percent of the women surveyed had repeated encounters with health-care providers but weren’t tested, even though at the time they were engaging in at least one high-risk behavior. In 40 percent of the cases, it was the patient, not the health-care provider, who prompted the testing. And in a few cases, women who asked for an HIV test were denied it.
Mandatory testing is unnecessary, Garcia contends, because with proper counseling most women will test voluntarily; she herself has never had a patient refuse. A series of studies from around the country, most notably at the Harlem Hospital Center’s High Risk Pregnancy Clinic, show that 80 to 95 percent of pregnant women counseled “without coercion or paternalism” (in Garcia’s words) agreed to be tested for HIV. Deane Taylor, director of the Maternal Child Health HIV Integration Project at Cook County Hospital, says that over 95 percent of the pregnant women at her hospital test voluntarily. But to compel them to test, Garcia argues, threatens to drive them away from the services they need most.
“Far from engaging people,” she says, “it will disengage them. Far from embracing them, it will turn them away. It shows such utter disrespect and disregard for women’s ability to make important decisions for themselves and their families. If we want women to be able to understand what the important implications of testing are, how to prevent infection in the future, how to make a good decision if their test were to be positive, we have to do that in the context of a trusting, respectful relationship, which this bill really does harm to.
“Look, the vast majority of women with HIV in Chicago are women of color,” she says. “And they traditionally have a problem with access to care. So what we’d be doing is setting up another barrier that says, We don’t trust you.
But what about the economic argument voiced nearly unanimously by those in favor of the bill that mandatory testing will be much less expensive than mandatory counseling? (Yogev, in his testimony before the legislature, would price mandatory counseling in Illinois at $75 million and mandatory testing at $64 million.) Garcia calls such claims blatantly ridiculous. “To do appropriate pretest counseling requires a very small amount of time. I personally think that within ten minutes you can convey what you need to convey and help people with risk reduction and help them understand what HIV infection is and the benefits to be accrued from testing during pregnancy.”
Anyway, Yogev’s assessment of the cost of mandatory counseling–“Four million women counseled nationally for half an hour each, that’s two million hours a year, that’s 10,000 people just counseling women”–is problematic because the underlying assumption is that counseling mechanisms would have to be built up from scratch. “We expect health providers in the context of prenatal care to provide all kinds of education,” Garcia argues. “We talk to women about preterm birth, we talk to women about nutrition, we talk to women about smoking, we talk to women when they are over 35 about the risk of Down’s syndrome and chromosomal disorders. But we don’t make them have a genetic amniocentesis. We don’t make an African American couple get screened for sickle-cell disease, even though we know that if both parents are carriers there is a 25 percent chance that baby will have sickle-cell disease. This should be no different.”
But for some reason it is different. The unspoken consensus in the medical field, as well as in the general population, seems to be that HIV disease is the single most horrible fate that can befall a newborn. But spina bifida, a disabling and often fatal congenital defect of the vertebral column, has the same prevalence in newborns as HIV, roughly one to two per thousand live births. Yet no one is insisting on mandatory screenings for it. Tay-Sachs disease, an inherited condition found most commonly in families of Eastern European Jewish descent, invariably causes death by age three or four, preceded by paralysis, dementia, and blindness. By contrast the average life expectancy of a child with HIV is eight years. Yet in one study 65 percent of 247 physicians and nurses in New York City neonatal intensive-care units agreed that a woman should not have babies at risk for AIDS, while only 25 percent agreed when the stated risk was Tay-Sachs.
I ask Garcia whether she’ll abide by HB 1314 if it becomes law. She takes a long pause. “I don’t know,” she finally says. “I haven’t thought about it as a reality yet. Having never had a patient refuse to be tested, I guess I would never come face-to-face with having to be in discord with the law. But I don’t know.”
And what of her continued involvement in the clinic with Yogev at Children’s Memorial? What if Children’s, currently formulating a position on the routine HIV testing of pregnant women, ultimately sides with Yogev? “Will I refuse to attend that clinic?” she asks herself. “I don’t know. I don’t know what form our negotiations will take.” It’s clear from her tone that withdrawal from the clinic is not impossible, however troubling it is for her to imagine. “But patients should not be harmed,” she adds. “They’re going to be harmed enough if this bill passes, and they don’t need to be harmed by our political differences.”
For Garcia, the bottom line is the importance of women maintaining full, equal partnerships with their physicians, a notion she believes mandatory testing will undermine. “We need to stop pitting women against their fetuses,” she stresses. “There is not a woman I’ve taken care of in the last seven years who would not want to do everything possible, including risking her own life, to prevent her child from becoming HIV infected. The notion [behind this bill] is that we have to take a punitive approach because women won’t make good decisions.”
In America we have a long history of imagining that women, especially those who are poor, won’t make good decisions and therefore must be told what to do. And women of color–the very people mandatory HIV testing will affect most, may as well be locked up in a zoo. As law professor Patricia J. Williams writes in “On Being the Object of Property,” “We live in a society in which the closest equivalent of nobility is the display of unremittingly controlled will-fullness. To be perceived as unremittingly will-less [the way most of the poor are perceived] is to be imbued with an almost lethal trait. . . . If pure will or total control equals the perfect white person, then impure will and total lack of control equals the perfect black man or woman.”
No one publicly discussing HB 1314 has made any serious attempt to place it within the framework of our country’s legislative history of reproductive control–or more accurately, our imagined need to control women who can reproduce. Murphy may argue that her bill is about saving babies (though it doesn’t ensure treatment to anyone). But the intent of the original bill is just as much about the state’s intrusion into women’s reproductive decisions. As Adrienne Rich writes in Of Woman Born, the statement “You will do this because I know it is good for you’ is difficult to distinguish from “You will do this because I can make you.”‘
The local media greeted Murphy’s bill with a month of nearly unanimous silence, the lone exception being the Sun-Times, which showed that even a passing consideration of the constitutional liberties of pregnant women (or of anyone with HIV) is as dear to its heart as arteriosclerosis. Somehow imagining she was condemning our society’s intolerance for people with AIDS, Michelle Stevens, deputy editor of the editorial page, wrote on February 27, “In exchange for humane treatment of AIDS victims, some of their freedoms ought to be constrained.” While she never stated which freedoms should be earmarked for the scrap heap, she clearly sees “humane treatment” as a bargaining chip when tightening the leash on the HIV-infected. She might want to contact a luxury hotel about opening a chain of well-appointed internment camps.
Three days later, Dennis Byrne, a member of the Sun-Times editorial board, wrote, “Some people will object to mandatory testing because it supposedly infringes on a woman’s rights.” (Supposedly?) Then, pulling out all the violins, he gushes, “Others, however, will agree with Maureen and Roy Baron, that it will only help give children what all parents dearly want for them: The right to have a chance at a long and healthy life.”
It’s no surprise that when those in authority seek to control women, they invariably focus on their reproductive capacity: in our culture’s fantasy, the wellspring of female unreliability lies squarely between a woman’s thighs. It wasn’t so long ago that medical experts diagnosed hysteria as a bad case of the womb wandering around the body; today it’s thought that PMS can turn a woman into a murderer. Either way, something in a woman’s reproductive anatomy drives her to the brink. The medical profession still has a devil of a time seeing women as something besides potential incubators: obstetrics and gynecology, they tell themselves, are a single practice. And if women lack internal controls, then control must be imposed by a wise, benevolent authority figure: a judge, an internist, a state representative from Oak Lawn. If all else fails, an ill-informed journalist is sure to rise to the challenge. Only two days after Norplant received FDA approval, the Philadelphia Inquirer ran an editorial with the headline “Poverty and Norplant–Can Contraception Reduce the Underclass?”
The number of regulations aimed at the reproductive rights of “the underclass” shows just how little it takes for the legislature, judiciary, and medical experts to don white gloves and start directing intrauterine traffic. In 1927 Justice Oliver Wendell Holmes defended the coerced sterilization of young Carrie Buck, institutionalized in the Virginia Colony for Epileptics and Feebleminded, by writing in his now infamous decision on Buck v. Bell, “We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices.” Deemed mentally deficient, Buck had been sterilized in accordance with Virginia’s newly enacted eugenic sterilization law. However, subsequent research revealed that Buck was not retarded–she had even done well in school–but was institutionalized because she’d given birth to a child after being raped by a relative of her foster parents. In essence, having a child out of wedlock made Buck “a potential parent of socially inadequate offspring,” as Holmes wrote, which meant the state could decide she should never parent again. (Buck v. Bell has never been specifically overturned.)
In the late 1950s and 1960s a number of states, including Illinois, saw legislation proposed that would have required mandatory sterilization of unwed welfare mothers with more than two or three children. Such women, it was argued, were “not fit to parent.” Similar proposals in the 1970s found strong support among medical professionals. One 1976 survey of private physicians found that 85 percent favored sterilization of women on welfare with three or more children.
In 1988 Dr. James Curran, then director of the CDC AIDS program, wrote in his agency’s weekly AIDS newsletter, “Someone who understands this disease and is logical will not want to be pregnant [emphasis added].” Sixty years after Justice Holmes declared that “three generations of imbeciles are enough,” Curran wrapped himself in the same mantle of paternalistic invincibility and declared that an entire class of citizens–HIV positive women–should not parent, despite the 75 percent chance that such women would give birth to uninfected babies even without AZT treatment. Though research shows that pregnant women with HIV carry to term with the same frequency as uninfected women, suddenly all HIV positive women who planned to give birth are, like Carrie Buck, branded illogical: mentally deficient.
Most compulsory-sterilization laws may be gone–or are at least unenforced–but the notion that it’s right for the state to take an interest in who has babies and under what conditions is alive and well. In 1986 Savitri Norman was convicted of forgery and ordered by the judge not to conceive so long as she was unmarried. The court characterized “giving birth to illegitimate children as evidence of irresponsible thinking”–Carrie Buck revisited. In 1988 Christine Thomas, convicted of grand theft and battery, received probation with the condition she not get pregnant until she found a husband. In 1992 Linda Gail Zaring, after pleading guilty to drug possession, was also ordered not to conceive during her five-year probation even though there was no evidence that any of her children suffered any drug-related health problems.
As law professor Madeline Henley points out, none of these women were explicitly encouraged to control their illegal behavior; rather, the court moved to control their reproduction. The reasoning seems to be that their criminality is inherent and mustn’t be passed on to any children, at least while the women are under the court’s supervision. Similarly mandatory HIV testing isn’t concerned with helping women reduce their risk of HIV infection. Instead it intervenes in a woman’s decisions, and in a way that makes the HIV positive woman a done deal, unworthy of further discussion. The only life worth saving, apparently, is that of her unborn baby. It comes as no surprise that Murphy, according to two independent sources, referred to women as “maternal organisms.”
Equally troubling in these cases is the court’s tendency to try to control a woman’s reproduction even though her crime has nothing to do with her ability to parent. The same impulse underlies HB 1314, by Murphy’s own admission. In her bumbling closing statement before the Health Care and Human Services Committee, she spoke of all the incompetent downstate and suburban doctors who don’t know enough to offer an HIV test to a white middle-class woman. Routine testing, she explained, would catch those women. The real crime was obvious–the irresponsible practice of medicine. Yet the response was to impinge on the civil rights of the women in the criminals’ care. By that point Murphy’s smoke screen of protecting “our littlest victims” was becoming transparent.
The cafeteria in the basement of the Illinois state capitol has all the charm and warmth of a forensics lab. At breakfast before the HB 1314 hearing on March 8, a handful of fellow AIDS service professionals and I sat in funereal silence, listening to one another chew. We had come all the way from Chicago, some of us to publicly voice our opposition to the bill, hoping that our well-researched, well-reasoned comments might sway lawmakers. But the unspoken truth among us seemed to be, We’re doomed. In those rare moments when conversation did arise, it almost always
focused on Yogev. Who had talked to him? How would he testify? Could he be persuaded to testify otherwise? As we got up from our table an attorney in the group, imagining how the newly Republican-dominated committee would see us, quipped, “Well, here come the baby killers.”
Fifteen minutes before the Health Care and Human Services Committee was to convene, the committee room was already overflowing. The veterans among us immediately began working the room, shaking hands with committee members and fellow lobbyists. The rest of us staked out the front row in the audience, naively hoping that a wall of well-dressed professionals sporting red ribbons might make an impact on legislators; in reality, it meant a lot of crushed toes as witnesses and legislators squeezed by.
By the time Murphy called her bill for testimony, I had sweated through three layers of clothing. Murphy explained that she’d just added an amendment to her bill giving a woman the right to refuse the test, but only after she’d been counseled on the nature and transmission of HIV as well as on the reduced chance of perinatal transmission with therapeutic intervention. Of course the right of refusal has meaning only if a woman knows she has it–and nothing in the amendment required the physician to inform her of that right. And if the physician were required to inform her, then we’d have a bill that said “You have to do this unless you don’t want to,” a bill whose intent would be decidedly unclear, as the confused expressions on the faces of the committee members attested.
Then Murphy announced, “It’s not really a mandate as much as it is routine”–hoping, perhaps, that none of her colleagues knew what a synonym was. After she introduced her star witness as a “technical-type proponent,” Yogev spent 15 minutes detailing everything that was wrong with her bill. “Let me state from the beginning that I have great reservations about House Bill 1314 as it is currently written,” he said, then explained that a good piece of legislation would mandate access to medical care and adequate counseling. He described to the committee the same service network he’d described to me earlier in the week, with regional counseling sites linking women to appropriate care facilities. Conspicuously absent, however, were his former assertions of support for the bill. “Because the purpose of routine testing of a pregnant woman is to engage her in a continuum of care,” he said, “we must allow her the right of refusal.”
Murphy would have been wiser to leave her second witness in the car. Bruce Pfaff, the Barons’ attorney, claimed expertise by dint of having “interviewed more than 50 doctors” and having read “more than 400 medical articles that were current and are current now.” He made no mention, however, of ever having talked to a real live pregnant woman. His remarks were colored by a confession, delivered in a rather grave tone, that he “generally disfavor[s] legislation that requires a professional, be it a doctor or a lawyer or an accountant, to do something specific [like, for example, obtaining a license before opening a practice?].” Yet he clearly had no qualms telling 195,000 nonprofessional laborers a year precisely what to do.
Where Yogev had pleaded the case of the women in question, hoping to guarantee them sensitive medical attention, Pfaff hardly gave them a thought. The test should be mandatory, he explained in the most horrifying moment of the hearing, because “it makes it easier for a doctor interacting with a patient.” So would a heavy dose of chloroform.
When Garcia took the microphone, she began by expressing her support for almost everything Yogev said. Then she turned on Pfaff. He had argued that, because Illinois law requires pregnant women to be screened for syphilis, the same should be required for HIV. “What he’s neglected to tell you,” Garcia began, “is that in 1990 there were 3,000 cases of congenital syphilis in the United States [roughly 1,000 more than the number of U.S. pediatric AIDS cases projected for the current year]. Why? Because women do not present for prenatal care. The disease is passed from mother to infant, it’s treated for pennies, yet it continues to happen.
“It’s not a problem of testing,” she said emphatically. “It’s a problem of access to care. . . . House Bill 1314 will not stop pediatric HIV infection, just as routine syphilis testing hasn’t stopped congenital syphilis.” For the first time since the committee had assembled in this overcrowded, overheated room nearly two hours earlier, everyone grew respectfully silent. “I challenge this committee,” she concluded, “to harness your insights and your energies into promoting an inventive public-health strategy.” Then Yogev, under further questioning from Representative Jeffrey Schoenberg, put the final nail in Murphy’s coffin, saying he was afraid he hadn’t made himself clear during his testimony: “I am very much opposed to mandatory testing.”
Even before Murphy finished her closing remarks the committee had apparently heard enough, judging by the abundant paper shuffling and murmuring. “Once again, the dollar numbers were really compelling, about the savings,” Murphy said, apparently referring to Yogev’s almost off-the-cuff explanation that taxpayers would pay annually $11 million less for mandatory testing compared to mandatory counseling. Or perhaps she was referring to Pfaff’s statement that an HIV test costs three dollars. Even Yogev couldn’t retain his composure hearing that: estimates vary, but a test generally costs three to ten times that amount, which would make mandatory testing very expensive indeed.
In only a few hours the mood among those who opposed HB 1314 had shifted 180 degrees. By the conclusion of the hearing Murphy seemed up a creek without a paddle, engine, or life jacket. It was hard not to feel sorry for her, fidgeting alone at her table, reduced to spouting prepackaged sound bites during her closing remarks about saving lives and taxpayer dollars. Later that afternoon I was reminded of Murphy by a park ranger who conducted a group tour of Lincoln’s home: every time he was interrupted by a question or a call on his walkie-talkie, he’d start his sentence over again, using the same words and precisely the same inflection. It was a well-rehearsed act.
Weeks after Yogev made most of Garcia’s best arguments for her, many in the AIDS service community still paint him as a duplicitous bully. Apparently they thought he’d done something underhanded by encouraging hundreds of people to phone Springfield in support of HB 1314–but we had all done the same in opposition. Garcia remains one of the few unwilling to vilify him. “Ram wants the same thing I want,” she says, “which is to provide care to infected patients and prevent babies from being infected. We have no inconsistencies in what our intentions are. It’s merely in how we go about that.”
Perhaps even their methods are beginning to merge. Yogev clearly took a step back from the rather hard-line approach to routine testing he expressed just days before the hearing, perhaps as a result of his ongoing meetings with Garcia. The two of them checked into the Springfield Best Western side by side, after sharing the train ride from Chicago and a cab ride from the train station. They met late that evening, when most of the rest of us were probably ordering pay-per-view. When I asked Garcia the next morning how the meeting had gone, she said, “Well, if he says what he says he’s going to say, [Murphy’s] not going to like him.”
Whether the two physicians will find even greater common ground on the issue of HIV testing of pregnant women remains to be seen, but signs are certainly hopeful. Before HB 1314 came to a vote, Murphy added a second Yogev-inspired amendment to it, one that clearly acknowledged Garcia’s position. The modified bill finally mandated HIV counseling of all pregnant women in a physician’s care, gave such women the opportunity to refuse the test before it was taken, and required their physicians to “arrange for additional counseling by a health care provider who is competent in counseling pregnant women and new mothers with HIV.” Still the bill died in committee a week after the testimony, squashed by a vote of 14 to 3. But Murphy appeared on WBEZ the morning after her defeat and vowed, “I will bring this up again this session.” And at this point Children’s Memorial still hasn’t taken a position on routine HIV testing of the pregnant women treated there.
If Murphy does reintroduce her legislation, let’s hope Yogev or Garcia or someone like them offers his or her input (but no one would blame Yogev if he fished for a new sponsor). Yogev says that the doubly amended version of HB 1314 still dissatisfies him. Instead of offering pregnant women “the opportunity to refuse HIV testing,” he wants the bill to require women to either agree or disagree to the test in writing, a change that would effectively eliminate the mandatory nature of the test. Murphy wouldn’t accept such wording, Yogev says. The difference may be subtle, but mandating a specific act, such as writing “I do not agree to take an HIV test,” seems infinitely preferable to being nebulously offered “an opportunity.” Resolving that difference may also finally bring Yogev and Garcia into complete agreement: according to Yogev, Garcia told him that with this additional change she would support the bill.
One thing is certain: the slew of divisive bills introduced in this legislative session–calls to eliminate anonymous HIV testing, calls to report HIV positive persons by name to the Department of Health, calls to test women merely charged with prostitution, and even calls to require couples to get HIV tests before obtaining a marriage license–ensures that better public health-care policies are a far-off dream for people with HIV in Illinois. As one member of the AIDS service community said to me, he’s spending all his time fighting against stupid testing bills when he could be fighting for legislation that might help cure or prevent HIV infection.
But perhaps the most useful lesson to be learned from the defeat of HB 1314 is the necessity of embracing dissent. Too often when a contentious issue rips through the professional AIDS world, the knee-jerk response is to choose a side and close ranks. Calling Yogev a lunatic discredits the many good ideas he has, encouraging an isolationist approach to the problem. Such divisions also potentially threaten patient care; Yogev confided that several medical colleagues said they would find it difficult to continue working with him if he supported HB 1314. But working through disagreements–and the more contentious the better–often sows the seeds of innovation, an invaluable resource in a time of plague.
Art accompanying story in printed newspaper (not available in this archive): Photos/Loren Santow.