COVER

THE ETHICS OF AIDS

GLEN ALLEN November 18 1985
COVER

THE ETHICS OF AIDS

GLEN ALLEN November 18 1985

Richard Fralick looked forward to the challenge of a new career when he left his Vancouver family medical practice to become a public health administrator in Toronto. But when the gentle-mannered 36-year-old moved into his spartan sixth-floor City Hall office in January, 1983, ready to deal with such age-old but mundane health problems as measles and the flu, the major illness confronting him more closely resembled a plague. Now there are 103 Acquired Immune Deficiency Syndrome (AIDS) patients in Toronto, almost one-third of the national total, and he spends 70 per cent of his time dealing with them and the problems raised by their affliction. Said Fralick, a crease of worry crossing his forehead: “It is a steady progression and it’s all so new. But there is a tremendous amount of public concern. I’m just taking it day by day.”

Lost: Like all health care professionals Fralick is keenly aware that Round 1 in the fight against aids—the search for a quick cure or even a treatment—has been lost. Now he is well embarked on Round 2—curtailing its virulent spread. And that job has plunged him into one of the most complex and far-reaching ethical crises in medicine. It has forced him and hundreds of other officials and ordinary citizens alike to contemplate such painful measures as the public identification and even possibly the isolation of AIDS victims and carriers.

The task of judging society’s responsibility to AIDS sufferers and their responsibility to others is a “balance of sorrows,” according to Margaret Somerville, a professor of law and medicine at Montreal’s McGill University. She describes AIDS as “the single most fascinating legal, medical and ethical issue that has arisen for ages.” It also raises profoundly difficult issues. Declared Somerville: “We have been through an era of promotion of human rights in law and medicine. But we haven’t really had a hard test of whether we can practise what we preach. This could be it.”

For Fralick, that test presented itself forcibly last week when the Ontario government grappled with the problem of identifying potential AIDS victims. Originally, the province had demanded that doctors identify the names and the risk group—“homosexual,” ‘‘bisexual male” or “intravenous drug abuser”—of patients they were testing for AIDS. But when Health Minister Murray Elston withdrew those requirements, citing human rights concerns, Fralick and other public health officials objected. Said Fralick: “Confidentiality is a red herring. It is information we need, and we have been very careful with it. We are here to protect the public.”

Few are prepared to make such confident statements on an epidemic that some officials say could spread to 25,000 Canadians by the end of the decade, if present trends continue. Indeed, the reactions among most others whom it affects reflect confusion and doubt. Among the developments:

• Federal prison officials say that they are concerned about AIDS but they have refused to provide prisoners with condoms that might prevent its spread. Providing them would condone the forbidden homosexuality that already exists in Canadian prisons.

• Canadian morticians, while prepared to bury dead AIDS victims, are reluctant to embalm their bodies. Pierre Bourgie, president of Urgel Bourgie Ltd., Quebec’s largest chain of funeral homes, said that his company has buried at least 10 AIDS victims. But despite appeals from relatives, it will not allow open-casket ceremonies.

• Although professionally committed to nondiscrimination, many dentists and dental assistants are afraid of treating AIDS patients and concerned that they may not be informed which of their patients are afflicted. Said Lome Rozovsky, a Halifax lawyer who teaches a law course to dental students: “Dentists are very alarmed. They are asking me whether they have the right to refuse patients.”

• Insurance companies are facing a dilemma too: AIDS is always fatal but difficult to diagnose. As a result, more than 30 U.S. insurance companies are now screening applicants for exposure to the AIDS virus. Two states have prohibited insurance companies from using the information to refuse applications—the first laws limiting information obtainable by the companies. For his part, Dr. Paul Kordish, medical director of Manufacturers Life Insurance Co.’s Canadian division in Waterloo, Ont., said that those who have been diagnosed with AIDS or AIDS Related Complex (ARC) “must be considered uninsurable.” He said that his company does not require AIDS blood tests from any applicants or take into account the sexual preference of clients. But he added that the policy is under active consideration in the company.

• Educators too are facing unprecedented confusion. Last September school officials sent home an unidentified Montreal student after the girl’s mother died of AIDS. The Quebec government ruled that no child could be expelled because of supposed exposure, and she returned to class. But the issue of whether teachers have the right to know if they have infected students has yet to be tested in any province.

• Even the U.S. military has been unable to develop a clear policy on the subject. Last month the Pentagon announced that the blood of 2.1 million active-duty personnel would be screened for evidence of infection, leading to fears by civil rights activists of an anti-homosexual witch-hunt. A spokesman said that those who admitted to homosexuality during the screening would not be discharged, but two weeks ago the Pentagon reversed that position and confirmed that such admissions would lead to automatic discharge. The Pentagon also plans to discharge any AIDS sufferers in the ranks and to restrict the activities of those whose blood tests positive. At present, the Canadian Armed Forces has no plans to screen its personnel.

Indeed, the greatest confusion of all—and the greatest potential for abuse—centres on the elaborate blood testing for exposure to the AIDS virus. Although it effectively protects recipients of blood transfusions, the Canadian Red Cross Society test does not determine the presence of the virus itself—only antibodies that suggest its presence. And the requirements for reporting positive tests vary across the country and are changing weekly. Nova Scotia, for one, still requires the full reporting of names. But like Ontario, New Brunswick and Manitoba are both moving toward a policy of coded reporting only, which would not reveal names. On the other hand, British Columbia and Alberta do not require any reporting at all. Said Dr. John Waters, director of communicable disease control for Alberta: “Reporting is neither necessary nor appropriate.”

Uncertainty: The practice is controversial because positive test results do not always mean that a person has AIDS. Tracey Tremayne-Lloyd of the Ontario branch of the Canadian Bar Association, which is launching a study of the legal issues relating to AIDS and discrimination against AIDS sufferers, said uncertainty might mean that governments have no legal right to require reporting of positive test results. The Canadian Red Cross Society has developed a procedure, which involves the sometimes reluctant assistance of family physicians, to ensure that test results remain confidential. Some authorities have raised concern about such results falling into the hands of insurance companies and employers. Kenneth Mews, information officer of the Red Cross AIDS project, said that some surgeons refuse to be tested for Hepatitis B because it is a reportable disease and they fear being ordered to discontinue their practices.

Useless: For his part, Dr. Martin Davey, assistant national director of the Red Cross’s Blood Transfusion Service, said that lists of people who tested positive are useless in any case. Declared Davey: “The people who test positive are healthy. They do not have AIDS, and we do not know whether they will ever get AIDS. It is not clear what the benefit of reporting will be.” Added McGill’s Somerville: “You have no right to generate information about anybody without their written consent, and it may do more harm than good. Giving information may frighten people from taking the test at all.”

The considered opinions of health care professionals and legal experts often contrast vividly with the irrational fears that still stalk the land. Dr. Alastair Clayton, director of the Laboratory Centre for Disease Control in Ottawa, called it “a plague mentality.” Despite constant expert assurances about the difficulty of contracting AIDS, Clayton said that his office still gets up to 20 calls a day from people afraid of casual transmission. For his part, Phil Shaw of the AIDS Committee of Toronto said that his office fields as many as 250 calls a day. Declared Clayton: “They ask about the safety of toilet seats, about swimming in lakes and sitting next to people in buses.” He said that he has now become as much an educator as a practising epidemiologist. Added University of Toronto epidemiologist Randall Coates: “You have to go back to the time of the black plague to find social stigmata like this. Death is a terrifying piece of news.”

That fear is aggravated by apparent conflicts in expert opinion. Although most researchers say that sexual or blood contact is necessary to transmit the virus, there is some controversy about whether it can be transmitted by saliva and tears. And researchers recently reported that the virus can survive outside the body longer than previously thought possible. Said Johanne Mousseau, associate director of the Ontario division of the Victorian Order of Nurses: “It has all come out so quickly. We tell you something that may change a year down the road and patients expect all the answers now. Who knows if something like deep kissing may transmit it after all?” Added Suzanne Jackson, of Ontario’s new AIDS Public Education Advisory Panel: “You can’t really blame people for having wild ideas. It is hard to talk about it in black-and-white terms because it is still somewhat grey. All the information is put in terms of ‘what we know so far.’ What we need is more education so we do not have lynch mobs coming out with rocks and stones.”

Indeed, the prospect of such a backlash—against AIDS sufferers and homosexuals in general—haunts all those who are grappling with the epidemic. Some members of the Hollywood film community recently told The New York Times that they thought blacklists of homosexual actors would soon emerge. Closer to home, Brian Chittock of the Comité SIDA-AIDS in Montreal said that the friends of one person with AIDS summoned a police car when he fell sick in their house, sent him away and then discarded all his clothes and everything else he had touched. Said Chittock: “When he is discharged from hospital, we will be the only friends he has.”

Leery: Patricia Gordon, a housewife from Milton, Ont., said that she believes the government is not taking more action on AIDS because homosexuals have a lot of political power. She has spent the past month gathering 1,000 names on a petition asking the Ontario government to reveal whether any teachers or children in Ontario schools are afflicted with AIDS. She said 95 per cent of those approached sign her petition. Declared Gordon: “They are leery and confused.”

People diagnosed with AIDS are even more worried about the possibility of their names being publicized or even assembled on official lists. But for public health officials that sort of information is vital in the effort to understand and curtail the epidemic. For his part, Clayton agreed that confidentiality should be maintained. But he added: “The gay community wants to be anonymous. Confidentiality and anonymity are not the same. In any case, somebody has to know the names. Even the doctor has to say ‘Good morning, Mr. Smith’ when his patient walks in the door.”

Still, some AIDS activists are uncomfortable relying on the security of the doctor-patient relationship, especially when dealing with a potentially explosive epidemic. They point to the findings of Mr. Justice Horace Krever of the Ontario Supreme Court, who completed a study of health record confidentiality in 1980 after a doctor was found guilty of obtaining confidential information from medical records without patients’ consent and then submitting it to insurance companies. Krever also found 25 lawyers, police and private investigators guilty of similar practices. For his part, Rozovsky raised the possibilty of other casual breaches of confidentiality. Declared Rozovsky: “Say a nurse is attending an AIDS patient in the hospital—is it not possible she might speak about the person?”

Rozovsky, who has written seven books on legal-medical questions, said that there could be sound reasons for reporting AIDS sufferers to health officials. “One is to force the person to have treatment,” he added. “But there is no treatment. A second would be for the tracing of contacts. But often the contacts are anonymous and may have occurred years before and, again, there is no treatment for them either. Perhaps the only acceptable reason for reporting is quarantine.”

Quarantine: To the homosexual community and almost all health and legal professionals, the prospect of quarantine is unacceptable—what Shaw called “a 19th-century solution to a 20th-century problem.” But it has forced its way into the debate because of the existence of so-called “loaded guns”—AIDS carriers and sufferers who continue to have sex with unwitting strangers. Dr. Chris Tsoukas of the Montreal General Hospital said that the first AIDS victim he ever treated continued to have sex with others despite the risk. Said Tsoukas: “This man made it obvious to me he was going to have a good time until he died, although the average AIDS patient is either too sick or too frightened to have sex.” And McGill’s Somerville cited a male prostitute with AIDS who disappeared to practise his trade in a larger city after he learned that he had the disease. She added that she has heard of two other cases, as well.

One form of quarantine is already in effect in at least one prison. Dr. Ormond Murphy, director of medical services for the B.C. Correctional Branch, said that one female inmate with a positive antibody test in his province is currently being kept separated. Said Murphy: “Basically we feel those inmates who are or are thought to be [AIDS-infected] should be separated from the rest of the inmate population.”

Bankrupt: Still, there are few advocates for extending the program. Said AIDS Committee of Toronto’s chairman, Thomas Alloway: “Quarantine is a bankrupt notion in more ways than one. It would destroy goodwill and only encourage irresponsibility. It would be terribly expensive and would raise a great hue and cry.” Added Ronald C. MacDonald, professor of ethics at the University of New Brunswick: “It would be very difficult to imagine a quarantine—it would have to be a lifetime thing. If the survival of our society is threatened it will be up to the law, but so much of it is a matter of discovery and education. The only public policy that can be contemplated ethically is education.”

Recently, public health authorities in Texas responded to a male prostitute who said he had AIDS but would not abandon his trade by warning 14 San Antonio AIDS patients that they faced felony charges if they behaved in the same way. In hand-delivered letters the officials said that anyone who exposed another person to the disease could be tried under state disease control legislation and receive two to 10 years in prison and a fine of up to $10,000.

Confining: Halifax’s Rozovsky said that quarantine may be legal despite the provisions of the Canadian Charter of Rights and Freedoms when those held in quarantine are not “compatible with the interests of society.” And Somerville noted that Canadian laws could be interpreted to allow the confining of AIDS sufferers who “show wanton disregard for the life and safety of other people” by continuing to have sex.

But most experts, like Rozovsky and Somerville themselves, say they find that approach repugnant. Even such front-line officials as Fralick, searching for ways to curtail the epidemic, say that quarantines are unacceptable. He said he is quite prepared and legally able to confine victims of syphilis and gonorrhea who refuse treatment. But the most he can do with AIDS patients is to order them to reduce the risk to others by practising such “safe sex” as using condoms to avoid the exchange of bodily fluids. Added Colin Soskolne, an epidemiologist at the University of Alberta: “In this kind of epidemic we have to engender enormous goodwill toward the people infected by the virus, if only because we count on these individuals to better understand the problem. If you bring out laws, you push the whole thing underground and then you create a whole new generation of problems.”

Spectre: Indeed, many experts say that the spectre of legal sanctions will fade as experts learn more about the epidemic and the public comes to terms with it. Psychologist David Streiner of McMaster University in Hamilton, Ont., who treats phobias, said that public anxiety will diminish within a year if the disease does not become more virulent. And the autumn of 1985 has brought a measure of relief. Clayton noted that there is no evidence in Canada of AIDS travelling outside known high-risk groups through prostitutes. And one colleague who has been conducting a study of Canadian hospital workers, Dr. Gordon Jessamine, has found that not one of them who has come into contact with AIDS patients has so far become infected.

That knowledge has already done a great deal to improve the quality of hospital care for AIDS patients. Said Irene Corbett, head nurse at the Ross II Ward of Montreal’s Royal Victoria Hospital: “We are really trying hard to make these people see that we care. We have to help them survive.”

Those men within the homosexual community itself have largely responded to the epidemic with a dramatic alteration of lifestyles. Much of that change has been due to education programs generated within the community. Robert Tivey, director of the AIDS Vancouver group, has declared November “Safe-Sex Month,” and the group is taking the message both to young male and female prostitutes as well as to every correctional institute in the province.

Some public concerns have also been eased by such eloquent spokesmen as Allan Pletcher, a Vancouver community college teacher who has AIDS {Maclean's, Aug. 12, 1985). Last month Pletcher delivered his message of compassion and responsibility on a three-part panel show on CBC TV’s The Journal that was viewed each day by more than a million people. Responding to the issue of a quarantine, he made an impassioned plea for understanding when he declared: “I am chaste, and I will remain so until I am cured or I die. I assume that responsibility.”

Positive: Pletcher says that since the show he has received about 50 letters and is frequently stopped by people on the street. Declared Pletcher: “Some are upset by my homosexuality but almost all are positive. We cannot ostracize each other and we have to inform ourselves. One thing is for sure. It is the hardest disease in the world to catch. You have to work at it.” He added: “I know I will die. Sometimes it is very sad—every time I go to a meeting of People with AIDS Together, a couple more have died. But my ‘right nows’ are wonderful.”

Indeed, a sense of responsibility similar to Pletcher’s is proving far more infectious than the disease itself. It extends even to the young, often-desperate male prostitutes who work big-city street corners. Last week Shaun, a 17-year-old Vancouver prostitute, told Maclean's that he only practises safe sex—“even though there’s less business down here now.” Added ‘Rebel,’ 32, who says he has been a prostitute since he was 10: “Everyone is being more careful, and the older ones are looking after the younger ones. We make sure they have condoms. Their clients too.”

Compassion: Those encouraging signs are reflected on the other side of the issue by more moderate views of some fundamentalist church leaders, who once characterized AIDS as God’s punishment for homosexual behavior. Declared Rev. Brian Stiller, executive director of the Toronto-based Evangelical Fellowship of Canada: “Christ would not walk away from AIDS swishing his religious skirts, and we should not give way to mass hysteria.” Stiller and ‘Rebel’ would probably be extremely uncomfortable in each other’s company. But in their different ways both are rising to the same challenge—and proving that compassion and understanding are the best weapons in fighting a terrible 20th-century epidemic.