John: Why do you stop us on the king’s highway and refuse us leave to go on our way?
Constable: It is because of the plague. We have a right to stop it up and our own safety obliges us to it.
John: We have a right to seek our own safety as well as you, and ’tis very unchristian and unjust to stop us.
Constable: Go back from whence you came! . . . Since you threaten us we shall take care to be strong enough for you. I have orders to raise the county upon you!
–Daniel Defoe, A Journal of the Plague Year
Fear of the plague provoked widespread discrimination and the denial of basic rights in and around London more than 300 years ago. The Black Death raged in the city, killing an estimated 100,000 people in less than 12 months. As citizens panicked, trying to elude that for which there was no cure, real or suspected victims were ousted from their jobs, driven from their homes (or locked permanently inside), and denied basic medical attention. In some cases the afflicted were condemned as sinners who had brought their terrible fate on themselves and deserved no special consideration or sympathy. These were indeed “very unchristian and unjust” times.
In the latter years of the 20th century, the disease called AIDS has reached epidemic proportions: 73,000 current cases diagnosed nationwide, some 30,000 already dead, an estimated 1.5 million Americans infected with the human immunodeficiency virus (HIV). Since almost 50 percent of those diagnosed are between 30 and 39 years of age, few have had the time to accumulate substantial retirement or social security benefits. The U.S. Centers for Disease Control estimate that by the end of 1991 AIDS will have developed in 270,000 U.S. citizens; fatalities for that year alone are predicted to be 54,000–or just a few less than were killed in the entire Vietnam war.
Chicago has not been hit as hard as the nation’s three major AIDS centers, New York City, San Francisco, and Los Angeles. But the illness is here, and elsewhere in Illinois, and as in the London of 1665, this modern plague has provoked a pattern of fearful reaction:
No one doubts anymore that AIDS is a public-health problem of massive and growing proportions. But it is also a civil rights problem–and those two problems are inextricably linked. Health considerations invariably get first priority: AIDS is serious business, and it has to be stopped. So if a few people get their feelings or their rights stepped on, goes the argument, that’s tough. “Are we serious about stopping this epidemic or aren’t we?” asks state representative Penny Pullen of Park Ridge, a member of the commission on the HIV problem appointed by President Reagan. “We’re not going to stop it by ignorance or by doing nothing!”
Other voices insist civil rights considerations must never be obscured or shoved into the background. Just how far are we willing to go, they ask, to stop AIDS? Should we put warning tattoos on HIV carriers? Is quarantine appropriate? Incarceration? Mercy killing? All have been suggested in recent years–some quite seriously. Given the nature of AIDS and the out-of-the-mainstream groups it most commonly strikes, the scattered rights violations reported so far could be but the prologue of a repression as fearful as the disease itself.
“This is the fastest growing area of civil rights,” says John Hammell, the director of the recently formed AIDS and Civil Rights Project of the Chicago-based Illinois American Civil Liberties Union. “I’m talking about serious, widespread discrimination against people who cannot fight back. They’re picking on groups without political power when that’s the last thing they can possibly stand.”
A Harvard-trained lawyer who previously worked for Business and Professional People for the Public Interest (BPI) and later for the Howard Brown Memorial Clinic, Hammell makes strong statements in calm, measured tones, as if arguing a case in court. His hope is that the ACLU’s project can alter practices in Illinois, a state whose legislative attempts to stem the spread of AIDS he regards as “a horror story.”
“I think we’re going to find that the cases of discrimination uncovered so far represent the tip of the iceberg,” says Hammell. “What we need is an expansion of antidiscrimination laws, not more encouragement for repression.”
He speaks admiringly of his clients: “They’re such basically good people. They’re dealing with so much sickness and hate-filled irrationality, yet they’re willing to get into a legal hassle, not so much for themselves but for those coming after. It kind of restores your faith in humanity.”
Because of ACLU involvement, discrimination cases involving persons with AIDS have gotten considerable media attention. The ACLU raised a ruckus, for example, when the Cook County Board in February 1987 prohibited Dr. Alan Bouffard, a neurologist at Cook County Hospital, from performing any of his assigned clinical and teaching duties. Following a series of administrative hearings he was returned to work, but with limitations on his patient contact. Again the ACLU intervened, arguing that there was no possibility of Bouffard contaminating others through his normal hospital activity. Late in 1987, with a hearing pending in U.S. District Court, the County Board backed down, restoring Bouffard to full attending-physician status–and likely setting a precedent for similar cases in the future. For Bouffard personally, the victory was short-lived. He died last year from AIDS complications.
Attention has also focused on a dental patient, identified in court documents only as G.S., who told his Chicago dentist of ten years that he carried the human immunodeficiency virus. The dentist, Dr. Karim Baksh, promptly refused him any further treatment. So G.S., through the ACLU, filed a complaint with the Illinois Human Rights Commission. Routine precautions, contended the ACLU, would adequately protect the dentist from infection. Baksh’s refusal to treat G.S., it was argued, amounted to discrimination against the handicapped, which is prohibited by the Illinois Human Rights Act. (AIDS and AIDS-related complex are presently interpreted by the commission as handicaps.) Furthermore, the ACLU argued, a dentist’s office, like any other business, is a place of public accommodation from which people cannot be arbitrarily banned. The decision is now in the hands of an administrativelaw judge.
Some notoriety also attended the 1987 removal of a first-grade student with AIDS from his normal class in a public school in downstate Belleville. ACLU lawyers in this instance too claimed discrimination against the handicapped, and provided a battery of medical experts who said the child, identified only as “Johnny Doe,” posed no real threat to other students or to teachers. The school district subsequently yielded and even agreed last year to pay Johnny $7,500 in damages.
While Hammell and the ACLU lean toward high-profile, precedent-setting cases, another organization, the AIDS Legal Council of Chicago, is covering a wider spectrum of legal problems involving those with full-blown AIDS or AIDS-related complex (ARC) or infected with the HIV virus. Organized only one year ago, the council has already recruited some 90 lawyers, who are volunteering their services. The office receives 40 to 50 requests a month for legal assistance.
The concerns of clients fall into four main groups, according to James Monroe Smith, council founder and director: inadequate or nonexistent insurance coverage, employment discrimination, confidentiality violations, and bankruptcy proceedings. In addition, he notes, there are dozens of other legal concerns that weigh heavily on the minds of people with AIDS, like getting a will in order or giving a trusted friend power of attorney to make decisions and dispose of property. “We charge nominal registration fees–$25 for an insurance case, $15 for employment discrimination, and $10 for anything else,” says Smith. “That’s all anyone ever pays here.”
Currently Smith is functioning mainly as an intake person, interviewing people, referring them to specific lawyers, and monitoring progress. The council also provides the attorneys and other interested persons with regular training sessions at which new developments, interpretations, and peculiarities of the law are analyzed.
Smith says the AIDS Legal Council is unique in that it exists solely for AIDS-related legal work and is not attached to any larger legal service or gay-rights organization. When he conceived the idea, he was advised by the experts to make the council a satellite to some larger group, but he believed independence would make for more efficiency. “A lot of agencies like the ACLU and the Howard Brown Memorial Clinic are doing everything they can for their clients,” says Smith. “But the medical and social-service needs are so great that no one can do everything.”
Thus far Smith has obtained grants from the AIDS Foundation of Chicago (at $20,000, it’s the largest), the Design and Interior Furnishings Foundation for AIDS, the Chicago Resource Center (funded by Chicago commodities speculator Richard Dennis), and other donors. The office, at 220 S. State, is modest, and so is the proposed budget–$135,000 for this year, which Smith is still scrambling to get. The council has an impressive 14-member board that includes lawyers, doctors, social workers, educators, and clergy.
James Monroe Smith, who uses his middle name to distinguish himself from “a million other Jimmy Smiths,” is a diminutive, polite, generally soft-spoken 31-year-old native of Connecticut and a graduate of Chicago Kent College of Law. To launch the council, he gave up a position with the Social Security Administration in Chicago.
“I’m gay myself and I’m cause-oriented,” he says. “When I was in school I saw how much homophobia exists in the law–the slurs and assumptions and generalizations. I sometimes told the professors what I thought needed to be said, and more than once they told me to sit down or get out of class. But I made it through.” Smith’s project for an independent study on constitutional law was entitled, “Gays and the Constitution: Are the 1st and 14th Amendments Relegated to the Closet?”
After graduation, Smith says he observed that those few lawyers who specialize in gay rights tend to burn out quickly; those working with AIDS clients encounter a double whammy, causing even more stress. So he began to talk with groups like the Chicago Bar Association, urging lawyers to volunteer for this hazardous duty. Some scorned him. “Great idea!” one attorney said sarcastically. “Maybe you should start a Herpes Legal Council, too.” But others, most of whom are not gay themselves, have since offered their services.
Some law firms are even encouraging their members to get involved with the council. Smith says the AIDS Legal Council could easily use another 100 attorneys, and he believes they are out there. “I have the impression,” he says, “that a lot of lawyers who make a lot of money in this city are miserable. They’re tied into a life-style they don’t like, and they’re representing wealthy clients or corporations they do not respect. They want life to be meaningful. We all do. So there can be a real satisfaction helping people who have nobody. You become a kind of minister, counselor, and handholder as well as a lawyer. There’s a satisfaction in that.”
Yet Smith hesitates to romanticize the lawyer’s role. “Face it” he says, “persons with AIDS are usually not cheery. Some are depressed or traumatized or uncooperative, maybe even suicidal. And some come off as users. They want you to take over their life and become their personal attorney. That’s one reason we charge something, so the clients are personally invested in the service. But you have to remember these people are under terrible pressure. They are harassed from every side and they are so vulnerable.”
John McIlvary sits in a chair in his small apartment in Uptown and ponders what might have been. He is a handsome man who looks younger than his 34 years, yet his voice is weak and he seems preoccupied. “How are you feeling today?” asks the visitor. “Better now,” he says vaguely. “I’m a little stronger.”
McIlvary was recently released from a hospital where he spent four weeks being treated for pneumocystis carinii pneumonia, the most common opportunistic illness among AIDS patients–and the most frequently fatal. The bill was $63,000. The hospitalization was his fifth since he was diagnosed with AIDS in early 1987. Fortunately his bills are fully covered by insurance, and he gets $664 a month in government disability allowance. He says he appreciates that and considers himself lucky in a way. What he does not appreciate is how quickly he was written off by his employers when the illness hit him.
For seven years McIlvary, a native of Galesburg, Illinois, taught third grade at a school in Germany serving U.S. military personnel. His employer was the U.S. Defense Department. “I enjoyed the work, I was a good teacher,” he says with a tinge of sadness. On a visit to the States in 1987 he unexpectedly developed trench mouth, a disease affecting the gums. Later he was hit with pneumonia. A thorough medical exam confirmed his worst fear: he had AIDS. “I think I had a nervous breakdown on the spot,” he says. “I was shattered.”
Nevertheless McIlvary, the dutiful employee, called the principal of his school in Germany and broke the news. “She said to me, ‘Please send me your resignation immediately.’ That’s all she said. I was stunned. I didn’t know what to do. So I mailed the resignation to her in writing. And it was accepted–just like that. No letters, no inquiries, no explanation of rights or anything. They just wanted to sweep me under the rug.” McIlvary was in no position at that point–physically or emotionally–to resist.
In November 1987 he moved into one of the Uptown residences sponsored by Chicago House, an agency that provides living accommodations for people with AIDS or related illnesses. He had scant savings, no job, and no insurance coverage. But he got in touch with a lawyer who heard his story and was appalled. Wasn’t McIlvary aware that as a Defense Department employee of more than five years he was entitled to disability payments and some insurance benefits? Hadn’t anyone explained his options at the time of his resignation?
The lawyer appealed to the federal government through the office of U.S. congressman Lane Evans, who represents Galesburg, McIlvary’s legal residence. Letters and inquiries flowed back and forth for months. Finally, in mid-1988, the government acknowledged that the former teacher had been in effect overlooked, and benefits were quickly and quietly extended to him.
McIlvary admits he’s still bitter over what happened. “You know, I probably could have worked another year or so after I was diagnosed. I wasn’t that sick. But I wasn’t thinking clearly at the time, and they just wanted me gone. If his lawyer had not intervened, he says, he has no idea how he would be managing now.
Douglas Deremer, a resident manager for Chicago House, says this teacher’s case is not unique. Others who live in the agency’s facilities have lost jobs, insurance coverage, even their living quarters after they were diagnosed. “That’s often why they come here,” says Deremer. “We try to make our places quiet and calm, no different from a typical home–other than the occasional ambulance or hearse that comes to the front door.”
Since the development of the anti-AIDS drug AZT, residents at Chicago House tend to live longer. “Before, they’d be with us maybe three to six months,” says Deremer. “Now it’s more like a year, two years, or more.” Of course that also means more hospitalizations, more extended dealing with insurance companies and other bureaucracies, and greater likelihood of legal complications.
Carmel Fleming, a nurse from Australia who works with Chicago House residents, says some AIDS sufferers are fighters: they are able to call on deep personal reserves, and they keep handling their own affairs even when their illness has drained them to the limit. Others, she says, are so overwhelmed by their situation that they just give up; they are in no mood to fight. “What we try to do is support people wherever they’re at,” she says. “Everyone is different.”
Gene Bruno, 26, a 1988 graduate of Northwestern University Law School, vividly remembers his first face-to-face contact with AIDS. He had offered his services to Smith’s council last fall and was put in touch with a patient in the AIDS ward at Cook County Hospital. “I was completely overcome when I went to see him,” says Bruno. “Here were 12 beds in this room with these 12 men just staring straight ahead. No telephones or radios or television that I could see–just this overcrowded, horrible facility . . .”
Bruno’s 29-year-old client had been in the hospital four weeks with AIDS-related encephalitis and dementia. He had only limited control over his bowels and bladder. His mental state was equally fragile. The young man was to be released to the custody of his parents within a few days, and Bruno had come to assist in finalizing and signing the papers that would turn power of attorney over to his parents. “It was very difficult to discuss personal matters in there,” says Bruno. “Everyone could hear everything, and the medical people all seemed to have succumbed to a rampant paranoia. They wore gowns and gloves and masks, and there were signs all around advising ‘caution’ and ‘high risk.'” When he went to set his coat on a chair, an aide warned him not to touch anything. A nurse then advised him that no papers could be signed unless a notary and a hospital administrator were present. They were summoned.
With the man’s parents standing beside the bed and the entire ward within earshot, Bruno talked as calmly and diplomatically as possible about the hard choices that had to be made.
When he inquired at what point his client would want life-support systems removed, the man began to weep. The mother embraced her son and the father placed an arm supportively around his shoulder. “So we were able to continue,” says Bruno. “I can only tell you it was very hard.”
Later, he momentarily set the signed papers on a desk near the bed, only to be rebuked by a nurse. “Take those off the desk!” she said. “He touched them.”
What struck the young lawyer most was the sense of ultimate rejection permeating the place–as if these emaciated, wasting men had somehow been placed by their illness outside the human condition. After he left, however, Bruno felt strangely elated. “I realized I had done something valuable, given advice the guy could not afford, shook hands and talked with him, helped him and his folks through a difficult moment.”
Bruno continues as a volunteer lawyer for the AIDS Legal Council. “A lot of people see the law as a greedy profession,” he says, “a license to make a lot of money. I think we have a social responsibility along with the license. We can’t control the future. Who knows who’s next? It can be a pretty lonely demise if nobody is there to help.”
Carole Cooke is another young Chicago lawyer who believes the legal profession has social obligations. Her firm, Sachnoff Weaver & Rubenstein, has a long-standing commitment to public-interest and pro bono law, and Cooke is among six of its attorneys who accept clients referred by the AIDS Legal Council. “We’re definitely a do-gooder organization,” says Cooke, a 1985 graduate of the Stanford University Law School. “That’s why I came to this firm.”
The first client referred to her had problems fairly typical of the low-profile snafus that trap people with AIDS. He was a 39-year-old south-suburban home owner who had obtained a $ 10,000 loan from an out-of-state bank to remodel his house. At the bank’s suggestion, he got insurance on the loan to guarantee repayment should he become disabled. About six months later he was diagnosed as having AIDS and suffering from a brain tumor. Unable to work and with medical bills mounting, the man could no longer meet the $285-a-month payments on the bank loan.
The insurance company flatly refused to cover them for him. It claimed that since he had seen a doctor about a pain in his neck several months before the policy went into effect, his current AIDS illness represented a preexisting condition and the policy therefore did not cover him. The bank then began demanding that the ailing man make his monthly payments, and threatened to seize his home if he did not shape up.
At that point Cooke became involved. She shot down the insurance company’s argument about a preexisting condition by producing the medical records, which showed no link whatsoever between the man’s neck pain and his AIDS. Faced with a lawsuit, the company reluctantly acknowledged that the policy was valid. But the bank, says Cooke, in an aggravating exercise in chronic bureaucratic miscommunication, continued to bother her client with “incredibly obnoxious calls at night, often at 10 or later.” Here was a man, she says, “who had barely come to terms with his condition. And he would have to tell his story over and over again to the bank people and tell them to please contact the insurance company for the payments.”
Finally, last June, Cooke convinced the bank to stop bugging her client. The man’s health and financial situation remain precarious. He has to file monthly forms for the insurance company explaining in depressing detail how sick he is and why he is unable to return to work. Although the long-term prognosis is not good, says Cooke, at least one minor monkey is off the man’s back.
Issues of eligibility for benefits and legal responsibility can become extremely murky in AIDS-related matters. Another of Cooke’s clients is a north-side Chicago man whose landlady wants him off the premises. The two had not gotten along especially well even before he was stricken with AIDS. She had complained of tardy rent payments and accused him of mistreating the plumbing in his second-floor apartment. After he got sick, she turned off the water to his apartment. So he sneaked downstairs and turned it back on, triggering an on-again, off-again war.
Cooke confronted the woman with the state’s Human Rights Act, which bars discrimination against the handicapped, and with the city’s landlord-tenant ordinance, which forbids cutting utilities without a court-ordered eviction proceeding. The landlady backed down, but she continues to vehemently deny that her dissatisfaction with the tenant has anything to do with AIDS.
Cooke comments, “It’s extremely hard to prove that discrimination is based on a specific handicap. There are almost always other factors present as well.” In this instance, too, she is content with a small, partial victory. “When I spoke with the landlady,” she says, “she wondered how he could have so much trouble paying his rent yet could still afford a downtown lawyer.”
Murky issues also surround the case of Fred Broome (whose name as well as some minor details of his story have been changed). He was the manager of a successful suburban furniture store when he tested HIV positive in 1987. Broome did not tell his employers or any coworkers at the time, nor did he inform them later when he was hit with AIDS-related pneumonia. After a medical leave of three months, he returned to work, bolstered with doses of AZT and other medications. Broome continued in his regular duties for about seven months, then was called in by the owners and summarily fired. The alleged reason: inability to perform his duties adequately.
“It just wasn’t true,” says Broome. “I couldn’t lift heavy boxes and crates like I used to, but we had a stock man for that. I wasn’t missing work, and I hadn’t been reprimanded. I demanded a hearing on the charges. They said no, the decision was final.”
Broome felt trapped. The owners had a certain advantage–since Broome had never told them he had the disease, they could deny that AIDS was a factor in the dismissal. Yet he was convinced that they were fully aware. Rumors had circulated around the store since his earlier illness; the bosses could hardly have avoided putting two and two together.
Broome talked to a lawyer who helped him file a charge with the Illinois Department of Human Rights, charging discrimination against the handicapped. Negotiations followed, and a fact finder was appointed. Broome wanted back pay and his job and benefits restored. The owners persisted in their position that AIDS was irrelevant to the whole affair. If inadequate job performance was the sole complaint, asked Broome, why was his firing handled “so clumsily,” with no previous warnings, no documentation of failings, and no opportunity for appeal?
About four months after the initial charge, the case was settled through the Human Rights Commission. Broome got a substantial benefits settlement but didn’t get his job back; the owners were cleared of the discrimination charge. Both sides swore not to talk about specifics, but Broome does say he’s satisfied with the way it was handled and the amount of time it took. “I felt a point had to be made,” he adds. “I think I’ll be all right now.”
Broome is among the first beneficiaries of a procedure for expediting AIDS-related cases instituted by the Human Rights Commission and its investigative arm, the Illinois Department of Human Rights. Ordinarily, says Dick Battles, the commission’s public-information officer, a job-discrimination case can take two years or longer to be settled. “We’re understaffed, and we get about 5,000 new charges every year,” he explains.
Several Illinois complainants with AIDS have died while decisions were still pending. Because of this, Battles says, AIDS cases are now assigned to investigators quickly and accorded high priority. Though hardly an avalanche, the number of AIDS-related charges reported to the commission is on the rise. From 1982 to 1987, notes Battles, there were seven. In 1988 alone, 15 new charges were filed.
Broome, whose hold on health is now somewhat tenuous, says he has come to terms with the illness. He broke off with his lover and lives alone in a one-room Chicago apartment. “There are a lot of things I can’t control anymore,” he says. “But what I can control I will, as well and as long as I’m able.” He is a leader of an AIDS support group and a volunteer at the Howard Brown Clinic, where he speaks to groups of patients and their families and does peer counseling. With the cooperation of his lawyer, he has gotten his financial affairs in order and written a living will, declaring that no extraordinary measures should be taken to preserve life when his condition becomes terminal. His advice to others similarly afflicted: get your legal situation straightened out–now.
That is also the advice of Drew Steele, chairman of the Chicago Chapter of the National Association of Persons With AIDS, a growing self-help organization. Unfortunately, says Steele, many lawyers–including some outwardly committed to social causes–shun AIDS clients or give them poor service. “We get the cold shoulder and runaround all the time,” says Steele. “They tell us, ‘We don’t handle that,’ or ‘We’ll get back to you.’ Well, PWAs [people with AIDS] don’t have weeks or months. We get frustrated and figure it’s not worth the hassle.” He cites one case in which a Chicago man received particularly uninformed legal advice in making out his will. As a result his property did not go, as he had intended, to his lover of 17 years but to his family, from which he had long been estranged. In particular, says Steele, AIDS patients need expert advice in finding their way through the tangled jungle of health-insurance coverage.
Many insurance companies now insist that applicants for health coverage take an HIV test, routinely rejecting those who register positive. And their panic is understandable. A year’s supply of AZT can cost more than $12,000. And according to officials at the National Center for Health Services Research and Health Care Technology, the 38,000 AIDS cases diagnosed last year alone will eventually run up medical and hospital costs of $2.2 billion.
Lawyers associated with the AIDS Legal Council are currently trying to reestablish health coverage for the Chicago attorney whose insurance was canceled because he was in the hospital when the group policy for his firm went into effect. Another case under investigation involves a major insurer that reportedly raised rates by 30 percent for all employees in a Chicago group plan after one member of the plan tested HIV positive. Still another company has declined to pay for AZT medication, claiming that the drug is still experimental. A national food retailer, the Circle K Corporation, last year sent a memo to its employees announcing that it would immediately cancel insurance coverage of any employee whose sickness resulted from AIDS, alcohol, drugs, or self-inflicted injury. The only exception was extended to those who had contracted AIDS from blood transfusions or an infected spouse. A furor erupted over the legality of that action, and Circle K later withdrew the policy.
Business and industry are not facing the threat realistically, says Susan Vance, a Chicago lawyer who frequently consults with corporate groups about their legal responsibilities. She cites a 1987 national study showing that less than 10 percent of major American firms had given any thought to handling AIDS outbreaks among employees, to protecting the interests of employees with AIDS, or even to providing AIDS education. When she talked about the subject at a meeting of corporate attorneys representing major companies, Vance says she got a “hostile–‘kill the messenger’–sort of reaction.” For many, she says, “AIDS is still not an issue for which they’re willing to do any advance planning.”
Smith says he fully expects that insurers and employers will try to wriggle out of their responsibilities. “They’ll try to escape,” he says, “even when they know they’re violating the law. They’ll do it because of fear–loss of workers, loss of customers, high costs.” They’ll do it too, he adds, because there’s always a good chance the aggrieved person will be dead and buried before he or she can obtain redress.
Fear of AIDS has spawned some controversial protective legislation in Illinois. The 1986 AIDS Confidentiality Act, amended last year by Governor Thompson, mandates HIV testing for all convicted sex and drug offenders and all hospital personnel. The law also provides that health-care professionals, including fire fighters and paramedics, who have contact with any person’s bodily fluids “in a manner that might transmit AIDS” can require that that person be tested and that they be shown the results, for their own protection. Another Illinois law, passed last September, states that doctors may test their patients for HIV without their knowledge or consent–even when there is no special medical reason to do so. (If a patient explicitly asks not to be tested, however, the doctor is supposed to refrain.) Finally there’s the extremely controversial one-year-old law that requires HIV tests for all couples seeking marriage licenses. Illinois is the only state in the union with such a requirement.
Of concern to people like Smith and Hammell is the possible dissemination of the results of all this testing to interested parties. Doctors are supposed to respect physician-patient confidentiality, but what constitutes a violation and the legal sanctions when a violation occurs are open to interpretation. “As far as I can see, we’re gutting confidentiality in this state,” says Smith. “Our policies are regressive.”
James Karpiak, who was the associate director of the AIDS Foundation of Chicago, adds that legislators have applied “overly broad strokes due to hysteria. Mandatory premarital testing is ineffective and a useless diversion of resources he says. “It ought to be repealed.”
In fact, there is a strong possibility that it will be repealed during the 1989 legislative session. Illinois Department of Health figures indicate that of the 160,000 or so prospective brides and grooms tested in 1988, only 23 were found to be HIV carriers (at an aggregate estimated cost to the applicants of $5.6 million). Add the fact that the total number of marriage licenses applied for in Illinois dropped by 20 percent last year, and you have a strong indication that many couples decided to marry elsewhere to avoid the test. That theory is bolstered by the surge of applications for marriage licenses by Illinois residents in Indiana and Wisconsin. Even Dr. Bernard Turnock, director of the Illinois Department of Public Health, favors repeal of mandatory testing, because of its cost and because it primarily targets young heterosexual couples, a very low-risk segment of the population.
However, state senator Beverly Fawell, a Du Page County Republican and a major proponent of premarital testing, views the opposition as fearfully shortsighted. “So they only discovered 23 cases last year,” she says. “Good! That’s 23 cases that hadn’t been detected and can now be treated.” She does not find the high-cost argument persuasive: “They say the money would be better spent on AIDS research. Well, we can’t just take money from couples and use it for research. What we can do is try to stop the spread wherever possible, and this is one way.”
Nevertheless Fawell concedes that the requirement will probably be abrogated by the legislature, thanks to complaints raised by gay-rights groups. “They see the test as a stigma directed at the homosexual population,” she says regretfully, “so they try to make it into a civil rights issue instead of a medical issue.”
Representative Penny Pullen, also a Republican and an equally avid advocate of detection laws, thinks firmer measures are needed than are now on the books. “We can’t really do anything if we don’t know the people who have the disease,” she says. Pullen is especially critical of Dr. Turnock and the health department for their “lack of will” in notifying the partners of those who have been diagnosed as HIV positive. Pullen would like to see public health caseworkers empowered to track down all the sexual contacts of infected persons and inform them of their situation. That is the practice in Colorado and several other states, she says, and though present laws in Illinois allow such health-department follow-ups, Turnock has declined to implement an aggressive search program. Instead, those diagnosed with AIDS or as HIV carriers are urged to contact past sexual partners themselves and warn them. If they fail to do so, however, no follow-up occurs.
Pullen, who plans to introduce several new pieces of AIDS-control legislation in the next session, including requiring state registration and inspection of sperm banks, says it’s time to get serious. “I’m not for trampling on anybody’s rights,” she declares. “I’m for protection. We have to have protection.”
We do have to have protection, says Smith, but at what price? If laws are passed that drive people underground, chase them out of the state, encourage or reward spying, and perhaps even create a black market in falsified AIDS-test documents, then fear and suspicion will only escalate–and AIDS will not be brought under control. You can’t protect people’s health, he argues, if you don’t just as scrupulously protect people’s rights.
Art accompanying story in printed newspaper (not available in this archive): photos/Jon Randolph.