- The protection of the civil rights of AIDS victims has dominated the agenda of the B.C. Civil Liberties Association for several years. We recognized, early on, not only that persons affected by the AIDS epidemic were especially vulnerable to injustices belied by fear, ignorance and panic, but that they stood virtually alone in attempting to confront those injustices. The BCCLA has addressed such problems as employment discrimination, testing, quarantine and access to experimental drug treatments. We have developed healthy working relationships with advocacy groups such as AIDS Vancouver and the Vancouver Persons With AIDS (PWA) Society. Though these relationships have not been without some rough spots, they continue to grow and to mature.It was from this background that early in 1989 the BCCLA approached the Department of the Secretary of State with a proposal for a project to be funded under the Human Rights Program. The proposal was to conduct a Canada-wide study of unfair discrimination against persons with AIDS, and persons who are, or are feared to be HIV positive. Although there had been some individual successes in combating AIDS discrimination (e.g. The Canadian Airline Flight Attendants Association vs. Pacific Western Airlines), and although human rights bodies in Canada were accepting discrimination complaints based on AIDS, it was the suspicion of the BCCLA that the real scope of the problem was unknown, as was the effectiveness of measures taken. We believed that this information could be an important tool in further attempts to eradicate this senseless and hurtful addition to the problems persons with AIDS already face. The Secretary of State agreed and approved a grant to fund the lion’s share of such a study.
- Discrimination itself is not necessarily unfair. We are discriminated against countless times in our lives: by stores and landlords on account of the thickness of our wallets; by employers because of our experience in the field of work; by sports teams when our skills are not great enough; and so on. Discrimination is only unfair when the characteristic upon which the discrimination is based is irrelevant to the role we seek to play. Thus one’s sex or the colour of one’s skin might well be legitimate grounds for the choosing of a lover but not for the choosing of an employee; and one’s physical capacities might be a legitimate ground of discrimination by an employer, but not for excluding one from housing.The forms of discrimination against persons with AIDS are justified, then, depends upon the relevance of the condition to the area of human endeavour to which they are being denied access. To a very minor extent, the physical and mental capacities of a person with AIDS may be relevant, but for the most part it is the risk of transmission of the disease that is the reason for discrimination.
- We shall not give a description of the physiology of the disease. The reader can consult any of the dozens of sources of this information.i What is important for our purposes are the known ways AIDS can be transmitted. These areii:
- by anal intercourse with an infected person
- by vaginal intercourse with an infected person
- by using contaminated intravenous needles
- from an infected mother to her infant (either while in the womb or through mother’s milk)
- by exposure to infected blood or blood products, and
- By organs transplanted from an infected donor
It is fear of contracting the HIV virus that prompts almost all of the discrimination against persons believed to be infectious with the HIV virus. It is generally accepted that it is the HIV virus that causes AIDS. If contact with an infected person would include any of the above known methods of transmission, then that fear is justified, and so may be the discrimination. If on the other hand, the contact with an infected person would not include any of these, the fears are groundless and the discrimination unfair.
When we can control the nature of the contact with an HIV-infected person, we can reduce the risk of transmission to zero. Unfortunately, we cannot always know ahead of time, or control what the nature of the contact will be. In that case the likelihood that the contact will include one of these methods of transmission needs to be weighed against the risk of transmission via that form of contact and the measures that can be taken to prevent that contact. There is, sometimes, a very small amount of risk. This question will be discussed in dealing with the various areas of discrimination against persons with AIDS.
- What are noted above are the known methods of transmission. Much of the hysteria caused by the fear of AIDS derives from the fear of contracting the HIV virus coupled with the fear that these known methods of transmission are “only” the known ones—that is, that there may be other unkoowm methods. Despite the vast amount of epidemiological data that demonstrates that these are the only ways in which the HIV virus can be transmitted, some people still balk. “AIDS kills, and there is no cure. Since you can’t guarantee that it can’t be transmitted through, say, saliva or tears or casual contact,” they argue, “We’re justified in protecting ourselves from even these kinds of contact.”The appropriate response to this fear is not just to point out that no risk of transmission by tears or saliva has been found. Even when people already know that some are still afraid, and will still avoid even casual contact. Rather, what we should say is that it is of the very nature of science (here, medical science) to be incapable of producing the guarantee that is demanded. An illustration may help here. We do not know why cancers develop. Still, there is no statistical evidence to link the occurrence of cancers with casual contact with someone who has cancer. That is to say there is no documented evidence that anyone has developed cancer after casual contact with someone with cancer, when literally millions of occasions of such contact. Does this prove that cancer cannot be transmitted through casual contact? In the only sense in which “proof” makes sense here, the answer a “yes”. But if we demand a iron-clad guarantee that such transmission could not occur, medical science stands mute. It stands mute not because more evidence is needed, but because more evidence, no matter how much, could not result in an answer.The case with AIDS is identical. We have as much evidence as is necessary to determine that we already know the only means of transmission. Despite tens of thousands of cases of casual contact with infected persons no cases have been documented where one of (a) to (f) was not presentiii. Does this prove that the HIV virus cannot be transmitted by casual contact? Again, in the only sense of “proof that makes sense, the answer is “yes”. There simply is no genuine risk of transmission by casual contact, and no justification whatsoever for discriminating against persons with AIDS when only casual contact is involved.
- The hysteria caused by the fear of AIDS is explained not only by the fear of contracting the virus, but as well by the assessment of the results of contracting the virus. It is generally believed that AIDS kills; that if one contracts the disease, one is certain to die, and soon.As a public health tool, this message is perhaps justified—the greater the fear of contracting the virus, the more likely that people will take steps to prevent contracting it. However, the belief that AIDS kills has had the unfortunate effect of creating a panic situation, one in which the harshest measures appear justified when there is the least whiff of a possibility of contact with an infectious person. Since it is this panic that fuels much of the unfair discrimination against persons believed to be infectious, the source of it needs to be addressed.If “AIDS kills” is understood to mean that if one contracts the virus one will very soon die, then the “AIDS kills” message is false. Though it is likely that most of those who contract the virus will eventually develop AIDS, and though it is likely that most of those who develop AIDS will succumb to it, neither is certain. Some people have been HIV positive for ten years and have not developed AIDS. Studies have indicated that ten percent of HIV infected persons develop AIDS within four years of infection, and thirty-five percent within seven yearsiv. There are estimated to be seventy thousand HIV infected persons in Canadav, of whom two thousand, five hundred and fourty-six have developed AIDSvi When a person does develop AIDS, their immune system breaks down, leaving them vulnerable to opportunistic diseases, and these opportunistic diseases are what cause death. However, though there is no cure for AIDS, there are drugs that have shown promise in protecting people from the opportunistic diseases. AZT, for example, is partially effective in protecting persons with AIDS from pneumocystis pneumonia, a disease that is implicated in fifty-six percent of AIDS deaths in Canadavii. Many other drugs are now being tested.
The point is not that we should not fear catching AIDS, it is that this fear should not be disproportionate to the actual danger. Of two thousand, five hundred and fourty six persons in Canada known to have developed AIDS, one thousand, one hundred and thirteen are still aliveviii. More significantly, the rate of death appears to be decreasing. In 1986, there were three hundred and seventy-nine deaths in Canada from AIDS; in 1987, three hundred and eighty-three; and in 1988, only one hundred and seventy. In the first three months of 1989, only eight persons died from AIDS-related diseasesix.
- In the coming decade, AIDS is likely to play a larger and larger role in our lives. The incidence of cases of AIDS in the gay population appears to be levelling offx. However, in the United States there is an alarming increase in numbers of cases of AIDS in the heterosexual population, and even more alarming estimates of the numbers of heterosexuals who carry the HIV virusxi.In the heterosexual population in the U.S., the major means of transmission are shared needles among intravenous drug users, and sexual intercourse with intravenous drug users Heterosexual users of intravenous drugs accounted for twenty-three percent of the new cases reported in 1988 in the U.S. In New York City, drug users have surpassed gay men in newly reported cases. Most of those are poor and black or Hispanicxii.These percentages cannot be applied directly to Canada, since we do not have the drug problem in the inner cities that the U.S. does. However, the signs that AIDS is on the increase in the heterosexual population are unmistakeable. What is of great concern in Canada is the attitude that young people have towards safe sex. In a recent study of thirty-eight thousand youths between the ages of twelve and twenty-one, it was found that most do not protect themselves during sexual intercoursexiii.
The aim of the study was to assess the scope and extent in Canada of unfair discrimination against persons with AIDS and persons infected or feared to be infected with the HIV virus. The study consisted of the collection of reports of unfair discrimination against such persons, the analysis of these reports, and a more in-depth assessment of two of the areas of discrimination identified: access to dental care, and treatment of inmates in correctional facilities.
It was decided at the outset not to require of allegations of discrimination that they be substantiated or proven founded. There were several reasons for this. The only reports of unfair discrimination that have been proven or sufficiently documented, are those in which judgments have been rendered by independent tribunals, such as labour arbitration boards or hearings before human rights bodies. The number of these was thought to be very small, and not representative of the scope and extent of the problem. For much the same reasons, it was decided not to include only those cases accepted by human rights bodies for investigation. Informal talks with AIDS advocates had indicated to us that few of the allegations of unfair discrimination had been reported to human rights bodies. The two major reasons cited by AIDS advocates were that individuals were afraid of further discrimination if they reported the incidents, and that many were sick, and did not have the strength or the desire to go through the potentially numbing and lengthy process of an investigation. Since the study was to be open to all allegations of unfair discrimination, and since incidents may well not have been reported even to rights or AIDS advocacy groups, it was decided not only to ask appropriate agencies to respond by reporting allegations of unfair discrimination, but as well to actively solicit allegations from those individuals who may have suffered unfair discrimination.
Questionnaires were prepared (see the appendix), and in June and July of1989 were sent with a covering letter explaining the study to the Human Rights Commissions, human rights and civil liberties groups, AIDS advocacy groups, and haemophiliac associations. For the province of Quebec, the questionnaire and covering letter were translated into French, and copies sent to the above agencies in Quebec and to Haitian community groups. The study was publicized in the national media (via a Canadian Press story) and through union representatives at a workshop on AIDS in the workplace. Selected unions were contacted, and where interest or potential discrimination was discovered, questionnaires were sent out.
A poster was prepared that described the study. It encouraged anyone who believed they had suffered unfair discrimination because of AIDS to call us collect and report the incident anonymously. These posters were sent to AIDS advocacy groups, restaurants bookstores and community centres across Canada. Magazines and newsletters with a gay readership ran announcements of the study. We monitored local and national newspapers for examples of discrimination.
In September 1988, we received several queries that indicated confusion about who could complete the questionnaire and whether the complainant needed to be identified. As a result, a letter was sent to all those who had been sent questionnaires explaining that anyone could complete the questionnaires and that no names or identifying information should be included.
A letter announcing that the information portion of the study would be concluded was sent to all recipients of questionnaires one month prior to the concluding date. The questionnaire part of the study was concluded in December 1988.
The response to the study was disappointing. We received eighty-three completed questionnaires and only one collect call reporting an incident of discrimination. In follow-up calls to agencies who had not completed and returned questionnaires, and in informal discussions with AIDS advocates, the following circumstances were reported. AIDS groups and many civil liberties and human rights groups are not well funded, and depend largely on volunteers who tend to come and go. As a result, a systematic record of complaint is rarely kept given the turnover in volunteer staff, and the loose organization of these groups, their ability to complete questionnaires depended largely on the memory of the person who received the questionnaires, and the memory of those who they had the time to consult.
The failure of individuals to call us collect to report incidents of unfair discrimination is more difficult to understand. Perhaps the posters were not as widely distributed as we had asked, and fewer individuals than we had expected knew about the study. Or, despite the fact that the anonymous character of the study was made clear on the poster, it may be that many AIDS sufferers were reticent to call, fearing that they might be identified and so suffer further discrimination. Finally, although AIDS groups were virtually unanimous in their support for the study, it may be that many individuals did not see it that way, wanting action and not “another study”.
On the brighter side, we note that Human Rights Commissions and several civil liberties associations and AIDS advocacy groups responded promptly and thoroughly to our request for information, and we thank them. The data conected reflects to a large extent their responses, along with information that we collected directly.
The chart below contains a numerical synopsis of the data conected, arranged according to area of discrimination. Analysis and commentary on the data is presented under the various area headings.
Table I: Range of discrimination Area of Reason for Total Discrimination Discrimination AIDS HIV + Feared infectious Housing 3 1 5 9 Employment 8 17 7 32 Health Care 7 3 4 14 Public Services 3 2 3 8 Other 2 2 16 20 TOTAL 23 25 35 83
Nine of the eighty-three cases of discrimination reported in the study were in the area of accommodation. Of these, three involved persons with AIDS, three involved persons known to be HIV positive, and three involved persons feared (but not known) to be infectious.
In one case a woman alleged she was refused tenancy when her prospective landlord learned that her husband had died from AIDS, despite the fact that she twice tested negative for the HIV virus. She complained to the Alberta Human Rights Commission, but abandoned the complaint when she found alternative accommodation. In another case, a man attempted unsuccessfully to commit suicide when informed of a positive HIV test result. An ambulance was called and a commotion ensued. The landlord tried to evict him citing the commotion as the reason. However, the man believed the eviction was because of his HIV status. He complained to the Saskatchewan Human Rights Commission, but he did not respond when the SHRC tried to contact him for additional information.
In an important case in B.C, a man who was known to have AIDS was evicted, the landlord citing the fact that he had a dog in the apartment and pets were not allowed. Other tenants were known to keep pets. He complained to the B.C. Council of Human Rights, and the case went to a hearing. Though the tribunal did not decide in favour of the complainant, it ruled that AIDS was included as a disability for the Council’s purposes and so established formal protection for persons with AIDS in B.C.
Five of the nine complaints involved the refusal of landlords to rent space to AIDS advocacy groups. Several of these are cited below. In discussions with AIDS advocates, however, we heard allegations that the actual number of refusals to AIDS groups is much higher. They reported that almost all AIDS groups had experienced discrimination, and most has been refused many times before finally acquiring space.
Of the nine cases reported to us, six were taken to human rights bodies. Of these six, two were informally resolved; one went to a hearing; and one is in the process of being adjudicated.
It is clear that refusing to rent or lease accommodation to persons known or feared to be infectious with the HIV virus, or to groups whose members or clients include such persons, is unfair discrimination. An HIV-infected person poses no risk whatsoever to the landlord, cleaning staff, other tenants in the building or future tenants of the space, since none of these would, in the normal course of events, have contact with the person which included any of the methods of HIV transmission.
Why, then, does such discrimination occur? The responses indicate three reasons:
Some landlords, caretakers and other tenants simply do not know that the presence of infectious persons poses no risk. In Ottawa, an AIDS advocacy group could find no one who would rent space to them. One landlord said he would lease them space only if they agreed to build a separate washroom, and to guarantee that the staff and clients would not use the buildings’ washroom. Another landlord backed down on a rental agreement when the caretaker refused to clean their office space. Other AIDS groups in Toronto, Saskatchewan, and Vancouver faced similar problems. And, a regional health department had difficulty proving its sexually transmitted disease clinic because prospective landlords didn’t want testing for AIDS taking place in their bunding.
(b) Fear of losing other tenants
Other landlords were afraid, perhaps justifiably, that they would lose other tenants in the building, or be unable to rent vacant space, if they rented space to an infectious person, or to an AIDS advocacy group. For example, one Ottawa landlord was willing to rent to the AIDS Committee of Ottawa only if they agreed in writing to leave if other tenants complained.
Though this fear may, in some cases, be justified, the discrimination is not the fact that other tenants wrongly believe they will be at risk is no good reason to refuse accommodation. The proper course is to provide the right information to any tenants who have such fears, and to point out to them that refusing to rent would place the landlord in contravention of the relevant human rights statute.
Unless a landlord admits that he or she just does not want gays in the building, it may be difficult to distinguish AIDS discrimination from discrimination on the basis of sexual orientation. And the two often go hand in hand, since many in our society think of AIDS as “the gay disease”. Thus when a landlord is approached by a prospective tenant who is a person or group of persons whom he or she believes to be gay, and he or she refuses them accommodation, it may not be easy to belate the ground of discrimination. Given that in many provinces and in federal jurisdictions discrimination on the basis of sexual orientation is not prohibited, gays are often left unprotected by our laws and human rights statutesxiv.
Unfortunately, it is common in Canada that gays are treated as second class citizens. For whatever warped reasons, gays have been and are still being punished for their choice of sexual expression. In fact until quite recently, homosexuality was widely considered to be itself a disease, both by clinicians and by the general public. Having fought hard for a modicum of respect gays are now finding that their gains are being eroded. AIDS is viewed by some as fitting punishment for an immoral lifestyle xv. Gays are now doubly “marked”, not only by a lifestyle which is seen as abnormal and which causes fear and anger among some males, but, as well, by being seen as the spreaders of a horrifying disease. Both of these views are, of course, false. Homosexuality is not unnatural and except in rare circumstances no one can “spread” AIDS—that is, we all can almost always protect ourselves against contracting the disease.
Given this, an express declaration in human rights statutes and tenancy legislation that discrimination on the basis of sexual orientation is prohibited is required on its own groundsJustice and fairness demand it. AIDS discrimination in accommodation provides a graphic example of the need for it.
By far the largest number of incidents of AIDS discrimination that were reported were in the area of employment. This was not what we had expected. The well-publicized arbitration ruling in The Canadian Air Line Flight Attendants Association vs. Pacific Western Airlines set a precedent almost two years ago. The arbitration board ruled not only that there was no genuine risk of transmission of the HIV virus by the night attendant in the normal course of his duties (which would include physical contact food distribution and emergency health care), but also that the fears of other employees and of customers was insufficient reason for removing him from his duties. By parity of reasoning, it was clear that firing or refusing to hire someone in like circumstances because that person carried the HIV virus would also be prohibited. As well, by the beginning of 1980s, all human rights bodies in Canada had announced that they were accepting complaints regarding AIDS discrimination in employment.
Two reasons for the large number of employment complaints suggest themselves. First, the questionnaires did not ask for the date of the alleged discrimination, and so we have no way of knowing how long ago some of these incidents took place. Second, many of the complaints concerned persons working in the food and health care industries. Employers in both these industries may well have had doubts about the risk that HIV-infected employees posed to their customers and clients, doubts that were not assuaged by the PWA decision.
There were thirty-two instances of AIDS discrimination in employment reported to us: eight involved persons with AIDS, seventeen involved persons who are HIV positive and seven involved persons who were feared, but not known, to be infected. Of these, eight occurred in the food service industry, seven in health care and nine in other employment areas. In eight cases the employment area was not recorded in completing the questionnaire.
In twenty-one of the instances, a complaint was filed with the relevant human rights body. None of the cases had gone to a hearing when this report was written. One was settled through civil litigation, seven were satisfactorily resolved through the informal resolution process, five were withdrawn and eight remain under investigation.
Eleven of the instances were reported to us by civil hberties or AIDS advocacy groups, and had not been reported to human rights bodies. Of these, in three cases a resolution attempt was successful, the union grievance process handled one and one went to civil litigation. Of the rest, two persons found a new job, two died before redress attempts were complete and the groups lost contact with two complainants.
The complaints of AIDS discrimination in employment include:
- Ron Lentz, who was hired by Toronto Western Hospital on January 4, 1988 and fired on January 22. Lentz was the founder of the Toronto AIDS Drop-In Centre, and had previously given a presentation about AIDS to the hospital staff. The hospital claimed he was fired because he was not completely open during the hiring process, though Lentz claimed that hospital staff knew he had AIDS, as he had said so in filling out an employee questionnaire. Lentz complained to his union, and to the Ontario Human Rights Commission. The Commission investigated, and found enough evidence of discrimination to order a public hearing. Minutes before the hearing was to take place in June, 1988, the two parties reached an agreement. Lentz was given his job back, full back pay, benefits, legal expenses and a clean employment record. The hospital continued to deny that it had fired Lentz because he had AIDS, though it never explained why he had been fired. Lentz, who suffered from the AIDS related cancer Kaposi’s sarcoma, died in December, 1988.
- A health care worker in Ontario who supervised developmentally handicapped teenage boys. He quit when he thought he had AIDS, tested HIV positive, and was denied re-entry to his position. The OHRC investigated, found that his job entailed holding children when they act out often biting or scratching, and that there was no other job he could do in the institution. Medical experts concluded he could not perform his duties and have the children be protected. The man withdrew his complaint.
- A man who was HIV positive was told by his physician that unless he quit his job, the physician would tell his employer his HIV status. The patient quit, developed AIDS a few months later, and died shortly thereafter.
- The mother of a haemophiliac child who was HIV positive was told by her employer that she’d be fired if she did not get tested. She consulted a social worker, who urged her to have the test to satisfy the employer. She did so, was HIV negative, and she continues working.
- A worker in a food processing plant who told his employer he had AIDS. The union, the employer, and the complainant met. There was concern about publicity, and all three agreed that the employee should not work, but receive full disability payment which continued for eighteen months (twelve months longer than the employer was required to pay). The complainant has since died.
- A gay worker in a correctional facility was interviewed at length about his sexual habits by the personnel department, who saidthey needed to be sure the worker was aware of the “AIDS crisis”. After complaining to the employer, the worker received a verbal apology, and a promise that staff would be educated about AIDS.
- A person who was dismissed from a well-paying job after his employer learned of his volunteer work for an AIDS advocacy group. He complained to the Alberta Human Right Commission, but his complaint was rejected because perceived disability was not a prohibited ground of discrimination in Alberta at the time. He began legal action, but it soon settled out of court because he could not afford to continue the legal process. He has not been able to find an equivalent position.
- A person who was offered a position as a part-time nursing attendant, subject to medical tests. When he tested positive for the HIV virus, the offer was withdrawn. He complained to the OHRC. The respondent said that mouth-to-mouth resuscitation was sometimes involved in the performance of his duties. After mediation, the respondent agreed to reactivate the job offer after it had ordered and received resuscitation masks.
- Four days after disclosing that his lover had AIDS, a Vancouver restaurant employee was taken off his food preparation, dish washing and customer service duties. He complained to the B.C. Council of Human Rights. The complaint is still under investigation.
- Vancouver worker with AIDS was laid off when his health began to deteriorate quickly. The employer admitted to an AIDS advocate that the worker could still perform his duties, but the employer was concerned that his presence would hurt business. The complainant was too ill to pursue an official complaint, and has since died.
- A cook who was fired from his job when his employer learned that he carried the AIDS virus (his employment record contains the notation “dismissed for having the AIDS virus”). He complained to the CHRC, which investigated the complaint and found that it had merit. The CHRC has ordered that a tribunal he appointed to hear the case, but the tribunal has not yet been appointed.
Despite the fact that all human rights commissions in Canada now accept complaints of AIDS discrimination in employment both for persons with AIDS and those who are or are feared to be HIV positive, the actual protection against such discrimination in Canada is uneven.
One problem is that sexual orientation is not a prohibited ground of discrimination under the human rights statutes in seven of the ten provinces, nor is it prohibited under the Canadian Human Rights Act. This is a gaping hole in the protection against AIDS discrimination, for it allows employers to unfairly fire, transfer or fail to hire homosexuals, even if the real reason for the discrimination is the fear of AIDS and not the person’s sexual orientation. In rebuttal to a charge of AIDS discrimination, an employer can simply say he or she doesn’t hire gay men, and unless there a evidence that he or she does hire gay men, and that the employer feared the person in question carried the HIV virus, the complaint would likely be ruled unfounded.
A second problem is that the degree of discrimination that is judged to be justified can vary from jurisdiction to jurisdiction. For example, the Canadian Human Rights Commission shows AIDS discrimination in employment in three situations:
- a person carries out invasive procedures as an unavoidable part of their work
- they must travel to countries which bar entry to people who test positive for the HIV virus and
- sudden deterioration of the brain would compromise essential safety requirements.
The Ontario Human Rights Commission, on the other hand, rejects two of these as justifying discrimination. Former Chief Commissioner Raj Anand has argued that:
- since there is no evidence of a health care worker infecting a patient (the normal situation in which invasive procedures are required), and since universal precautions are mandatory in hospital setting, there is no justification for not allowing HIV-infected workers from performing invasive procedures, and
- the mere fact that sudden deterioration of the brain would compromise essential safety requirements does not justify discrimination. Asymptomatic AIDS victims pose no risk whatsoever, nor do many suffering AIDS. Evidence that neurological impairment is immanent or has taken place (which can be monitored by the patient’s physician) must be offered before discrimination before discrimination is justified.
Given these sharp disagreements in stated policies, it is likely that decisions in individual cases will vary from province to province, depending on the epidemiological data chosen or at hand, the assessment of risk factors, and the more general weighing of public interest against individual rights. For example, the risk that a cook who is HIV-positive poses to customers may be viewed differently by different agencies. A conservative view would be that the slight chance that a cut or sore on the cook’s hands would result in HIV-infected food, and that customers could conceivably contract the virus by eating the food is too great a risk to require the public to take, given the deadliness of the disease. A more progressive view would be that since no one has contracted AIDS from food despite the fact that there were likely a significant number of HIV-infected cooks who took no extraordinary precautions as they were unaware of their HIV status, there is no genuine risk, and cooks should not be assigned other duties or fired if they become HIV positive. We support the latter view.
A third problem concerns the time taken to adjudicate complaints. The cook who was fired from his job complained to the CHRC in November, 1987. The Commission investigated, and decided a hearing was warranted. As of the writing of this report, the panel that will conduct the hearing has yet to be appointed. By comparison, Ron Lentz’s hearing was scheduled within 6 months of his complaint. Our aim in reporting these incidents is not to point a finger at some human rights agencies, but to underscore that the time taken to adjudicate AIDS complaints is an important factor.
Many are sick or soon will be. If redress action is to be taken, it needs to be taken quickly, while the person can still perform the job of which he or she was unfairly deprived, or while compensation can still benefit the complainant.
If it is determined that an HIV-infected worker poses no threat to the safety of customers and the general public in the normal course of his or her duties, then it cannot be fair to allow discrimination because of the fear of loss of business due to the unwarranted fears of customers or the general public. The case of the food-processing worker who because of fear of adverse publicity was offered a compensation package is a good example. Though the employer may have been generous, it is still unacceptable for the employer or the union to pressure the worker to accept compensation, or even to suggest it. The proper course is for human rights bodies, employers and health officials to embark on a publicity campaign so that the customers and the general public are aware that there is no risk of transmission, and that all public agencies and private businesses may, knowingly or unknowingly, employ HIV-infected persons.
Although the study did not include an assessment of the number of employers who have a written policy on AIDS in the workplace, we understand that very few do. In fact, it was only in the spring of 1989 that the federal government instituted such a policy. In the coming years it is likely that most large employers, and many smaller ones, will have HIV infected employees. It is thus of paramount importance that employers institute a non-discriminatory policy respecting HIV infected employees. Some of the existing policies (such of those of the City of Vancouver and the Province of B.C.) could serve as models. AIDS discrimination in employment is repugnant, for it is from our work that many of us derive much of our pride in accomplishment and our feelings of self worth.
Access to health care
Of the fourteen instances of AIDS discrimination in health care reported to the BCCLA, nine involved access to medical care other than dental, and five concerned access to dental care. The issue of access to dental care will be treated separately.
In only four of the nine cases were complaints made to an official body.
- Though originally accepted to a privately operated psychiatric transitional care facility, a patient was subsequently refused acceptance when it was learned that he had AIDS. He complained to the Alberta Human Rights Commission. The complaint was dismissed when it was argued by the respondent that the service provided by the facility was specific to a public that did not include persons suffering from a terminal physical illness.
- A patient being treated for a chronic sinus condition was asked for his sexual orientation. Suspecting the question was an illicit attempt to screen for AIDS, the patient refused to answer, and complained. The hospital refused to act on the patient’s complaint, so he pursued the complaint to the College of Physicians and Surgeons of Ontario. The outcome of the complaint is unknown.
- Three persons with AIDS complained to the Ombudsman of B.C. when the B.C. Government refused to pay more than eighty percent of the cost of the experimental AIDS drug AZT unless the patients were on welfare. B.C. is the only province in Canada where AZT is not fully funded. Though the Ombudsman judged that the practice was unfair, he did not agree that it was discriminatory on the basis of disability or sexual orientation. The three have since petitioned the court to rule that the practice is discriminatory, and to force the government to pay the other twenty percent. One of the complainants, Kevin Brown, who was the longest surviving persons with AIDS in Canada, succumbed to the disease in May 1989.
- A haemophiliac in Ontario was subjected to what he thought were unnecessary isolation procedures in a hospital (e.g. he was refused the use of a washroom and had to use a bedpan). He felt stigmatized by the treatment, and made a complaint to the OHRC. The investigation of his complaint was held up for many months by a wrangle over whether the hospital’s counsel could sit in on interviews of experts and witnesses. That wrangle has been settled, and a disposition of the complaint is expected soon.
In the other six cases, no official complaint was filed. The reasons cited include fear of further discrimination by health care officials, and success in getting treatment from another source. These cases include:
- A patient in Ontario was refused an examination by a physician when the physician learned of the patient’s positive HIV status. The physician interviewed him through a door, and prescribed treatment. The person complained to the local Health Department, but no investigation was carried out. The patient declined to complain further, as he was afraid he would not be able to access local health services.
- A person with AIDS who was interviewed by a new physician, was promised good care. The next day the physician’s secretary called and dismissed the patient, refusing to cite a reason. This was the third such instance for this person. The person was unwilling to pursue a complaint, and has now found a personal physician.
- In 1987, a volunteer for a Toronto AIDS advocacy group refused to take an AIDS test while being treated for a heart problem in hospital. A “blood precautions” sign was posted over his bed. Subsequently he alleged that cleaning staff rushed in and out of his room, a technician would lean as far away as possible when taking blood tests, and the doctor making rounds stopped coming to his room. Universal precautions were not in place at the time.
- In rural B.C., a person with AIDS was told by staff at the hospital that care would no longer be given, and he was referred to a Vancouver hospital. He was forced to relocate, away from friends and support.
- In December 1987, staff at a Toronto hospital opposed the performing of elective and cosmetic surgery on a person carrying the HIV virus “until more is known about the transmission of the disease”. The hospital did not practice universal precautions at the time.
The refusal of services by health care officials, and the stigmatization of AIDS patients because of unnecessary precautions, are particularly chilling. It is to health care personnel that persons with AIDS turn for care and understanding, and it is singularly painful for such patients, who have often been ostracized by the community, to be rebuffed there also. Thankfully, the incidence of such discrimination is low, and much progress has been made since many of the cases cited above occurred.
The major reason for discrimination in health care settings, as in most other areas, is fear of contracting AIDS. Unlike in many other cases, however, there appears (at first glance) to be justification for this fear. Health care personnel, including nurses, doctors, orderlies and cleaning staff, are often in situations where they may be exposed to the blood and bodily fluids of infectious patients. Needle stick injuries, scalpel cuts and blood splashes are not uncommon, and soiled clothing and bedding must be handled.
In response to the potential exposure of health care personnel to HIV-infected blood and bodily fluids, the Center for Disease Control in Atlanta recommended sets of precautions that should be taken by health care personnel depending on the type of contact with blood and bodily fluids of patients that may occur. There are known as “universal precautions”, and they include wearing gloves, gowns, masks, eye protection and shoe coverings, as well as instructions on the handling of needles, scalpels and other sharp instruments. They are called “universal” not because all of them need to be taken all of the time, but rather because, when properly used, they protect the health care worker against all blood and bodily fluid-borne viral agents. The most important feature of universal precautions is that, since the blood or bodily fluids of any patient may be infectious, they are to be taken with all patients.
The old method of infectious disease control was to treat those diagnosed as infectious differently from other patients, in personal care, in isolating them from other patients, and in the handling of bedding, instruments, waste and bodily fluids. Isolation is still necessary for airborne infections, but for blood or bodily fluid-borne infections this method has been rejected because the delay in diagnosis creates a danger, testing may not identify all infectious persons, the patients need to be willing to be tested and the cost is enormous. The philosophy behind universal precautions is that the blood and bodily fluids of all patients and staff should be treated as if they are infectious. This makes the differential treatment of infected patients and staff unnecessary, and eliminates the serious risk of infection from undiagnosed carriers under the old system. It does not apply to faeces, urine, nasal secretions, sweat, tears, saliva, sputum or vomit, as there is no evidence whatsoever that anyone has contracted a blood or bodily fluid-borne virus after exposure to them (“exposure” here is meant that there has been direct contact between these fluids from the infectious person and an open cut, the skin or the mucous membranes of the other person).
Which precautions are to be taken in any situation depends upon the likelihood of exposure to infected material, and the risk of transmission inherent in that kind of exposure. What are these risks for HIV transmission? They are remote, but not non-existent.
First, there is no evidence of a risk of HIV transmission for personal care workers (hairdressers, barbers, cosmetologists, manicurists, pedicurists, and massage therapists) or their customers, despite general lack of adherence to universal precautions, often even to simple infection prevention techniques such as washing hands and instruments.
Second, there is no evidence of transmission from casual contact with HIV-infected persons. Of the more than thirty thousand AIDS cases reported in the U.S. up to 1987, there was not a single case of seroconversion in family members and friends that could not be accounted for by high risk activity (sexual activity, shared needles) or by perinatal transmissionxvi. These contacts included sharing household facilities such as beds, toilets, kitchens, eating utensils and towels, and personal contact such as kissing, hugging, biting and scratching. In most of these cases this activity took place before any precautions were used, as the patient had not been diagnosed, and continued, on average, for three years.
There have been instances where health care workers tested positive for HIV after sustaining needle stick injuries or blood splashes. In fact it was after reports of three of these cases in the U.S. that the Center for Disease Control issued its recommendations for universal precautions. Though there is now doubt that in two of these three cases the worker contracted the virus because of the incident, there is little doubt that HIV seroconversion can occur as a result of workplace accidents. A nurse in Buffalo, N.Y. is now suing the doctor who in 1985 accidentally jabbed her in the forearm with an HIV-infected needle, and who now has AIDSxvii.
However, the few incidents of seroconversion need to be put into perspective. In one survey of seven hundred and seventy health care workers who were exposed by needle stick injuries, only three tested positive for antibodies to HIVxviii. And in only one of these was the exposure event documented by blood samples taken before and afterward, and that injury is noted above. Normally needle stick injuries result in the inoculation of an extremely small volume of blood. Furthermore, had existing guidelines been followed, forty percent of these needle stick injuries would have been prevented.
Contact with the blood, semen or bodily fluids of HIV-infected patients has an even smaller risk factor. In a survey of sixteen hundred hospital workers who have been in close physical contact with patients with AIDS and who were exposed to infected body fluids, there was only one incident of infection with the HIV virus, and the epidemiological evaluation of that one subject was incompletexix. In another survey of 491 family members of patients with AIDS who were in close physical contact with the infected person, there was not a single HIV infection that was not accounted for by high risk factorsxx. And at San Francisco General Hospital, which has treated more than ten thousand HIV positive patients, there has not been a single case of transmission of the HIV virus from a patient to a health care workerxxi.
In short, even without universal precautions, the chance of a health care worker becoming infected by exposure to the blood or bodily fluids of HIV patients is very low. And with universal precautions, including careful handling and disposal of sharp instruments, and barrier techniques, the risk approaches zero. There is thus no reason for any health care facility to refuse an HIV infected patient the care that would be offered to other patients. To refuse care because the patient is or is believed to be HIV infected is unfair discrimination.
Furthermore, other patients’ that they might catch AIDS from a health care setting in which HIV positive patients are treated is completely without foundation. Though the use of universal precautions has been sporadic and that most patients who are HIV positive are not identified as such, there have been no known cases of transmission of the virus from patient to patient. The normal precautions taken at any health care setting (sterilization of instruments, clean towels and linen, hands washed before the next patient) provide complete protection against the transmission of the HIV virus from patient to patient. And all health care personnel know, or should know, that this is so. Therefore there is no justification for not treating HIV positive patients because of the unwarranted fears of other patients.
Under “public services” we include not only governmental services, but also services offered by private agencies that are normally available to the general public. We were surprised to receive very few complaints in this area, for we expected that those who operate such services as swimming pools, gyms, and sports organizations, and those who use such services, would be sensitive to the presence of HIV infected persons, and so likely to unfairly limit access. The treatment of persons infected, or believed to be infected, with the HIV virus in correctional facilities will be discussed separately below.
We did receive some complaints regarding discrimination in access to public services: three from persons with AIDS, two from persons who were HIV positive and three from persons feared to be infectious. In four of the eight cases the person complained to a human rights body. One of the complaints was dismissed, one was informally settled and two are still under investigation. Of the four other cases, two were resolved informally, and no action was taken in the other two.
The complaints included:
- In the course of seeking referral to a job training course, a person volunteered the information that he was HIV positive. The referral was refused. The person complained to the CHRC, which, after investigation, dismissed the complaint on the grounds that there was insufficient evidence of unfair discrimination.
- An Ottawa prostitute who carried the HIV virus was ordered by the court to attend a drug rehabilitation centre. When authorities at the centre learned who she was, she was refused entrance. She was then admitted to a treatment centre, but staff at the centre rebelled at her presence, and she was again forced to leave. Finally, she was able to overcome her drug addiction by herself, despite the lack of the resources normally available to persons with drug problems.
- The welfare worker for an HIV positive client refused to visit his home, saying she might catch AIDS from his cats. He did not have access to the welfare office that was in another city. The client obtained legal assistance, and after a meeting with the worker, the worker agreed to visit his home, but with the odd proviso that the worker would notify the client two days before a visit.
- A Vancouver prostitute with AIDS was referred to an emergency shelter. As she sometimes showed up at the shelter with open wounds, having been beaten by other prostitutes, the director of the shelter asked that she be quarantined. Some staff, afraid of catching AIDS, wanted to know the HIV status of all clients. Staff had difficulty treating her due to a shortage of rubber gloves. After a meeting with the director, health officials and the police, the prostitute was offered, and accepted, a support and shelter package that would keep her off the streets.
The bulk of the twenty cases included under this heading are reports of refusals by immigration authorities to allow suspected HIV carriers entry to the United States. It is not known whether formal complaints were attempted by the individuals concerned. Though Canadian citizens are the ones affected by U.S. immigration policies, it is left to American human rights and advocacy groups to press Washington for changes in this policy.
In the other six cases, two complaints were made to human rights bodies, one to a provincial Rentalsman, one complainant took his case to court and two others did not complain.
- A Montreal landlord whose tenants refused to pay rent when they learned he had AIDS. His complaint to the Rentalsman received no action.
- A dating club in Toronto that demanded an AIDS test from prospective members. Despite an OHRC ruling that the practice was unfairly discriminatory, the club continues to demand the test.
- An Ontario private school which announced two years ago that it would test all students and staff for AIDS. It is unknown whether the school continues with this policy.
- An Ontario gay father who was granted access to his son by his ex-wife on the condition that no one who tested HIV positive could go near the boy. The father subsequently tested HIV positive, and the mother petitioned the court to grant the father access only if he didn’t touch his son. The court decision is unknown.
- An Ottawa man who was charged by police with donating infected blood, and who the police believed was still sexually active. The police released the man’s picture to the press, despite not knowing whether the man, if sexually active, was practising safe sex.
Treatment of persons with AIDS in correctional facilities
The treatment of persons with AIDS in prisons is, like access to dental care, an acid test of our rationality, fairness and compassion in dealing with persons with AIDS. Given the occasional violent nature of interactions among prisoners, and between prisoners and staff, it is to be expected that fear of transmission of the HIV virus would override a clear-headed and compassionate approach. This is just what has happened.
Among the complaints we received were:
- An inmate in Ontario who, when it was learned he was HIV positive, was placed in solitary confinement. Though the guards were helpful and tried to make him comfortable, he was required to clean the shower and the telephone with bleach after he had used them, had non-standard visiting hours, and all books read by him were destroyed.
- Guards at Kingston Penitentiary threatened to refuse to work in an area housing an inmate with AIDS. Universal precautions were not available at the time.
- An inmate in a B.C. remand centre told prison officials he might be HIV positive. He was placed in twenty-four hour lock-up for 16 days despite two negative HIV tests, was allowed visits only when separated by a plastic window from visitors, was accompanied by guards in rubber gloves when out of his cell, and friends claim they were denied visits “because he has AIDS”.
The problem is not simply that guards are, or were, poorly educated about AIDS. The policies that govern their activities, especially those policies older than one year, reflect an abominable ignorance about HIV transmission. Some features of the policies under which corrections officials presently operate are given below. It should be remembered, however, that most of these are presently being redrafted (the exceptions being Alberta, revised November, 1988, Ontario, revised draft, April, 1989, and the federal policy, revised January, 1988). We were unfortunately unable to obtain copies of many of the draft policies. We have decided to include commentary on the old policies for two reasons. First, the study is historical, and that’s the way things were. Second, our criticisms may help corrections officials to draft sane and compassionate policies.
- TestingSome of the policies require mandatory testing of all incoming inmates who are suspected either because of lifestyle or medical symptoms of being HIV positive or having AIDS (e.g., Saskatchewan, revised January, 1986, presently being redrafted). Others require questioning of new inmates to identify suspected HIV carriers, but require consent for testing (e.g., British Columbia, revised January, 1988, now being revised; Manitoba, revised July, 1987, presently being revised; and Alberta, revised November, 1988). The federal and Ontario policies are not aggressive regarding HIV testing, but advocate testing only at the request of the inmate, and only with informed consent.The major reason for testing is to identify infectious inmates, and the reason for identifying infectious inmates is because most policies require that they be treated differently than other inmates. For those inmates who require special medical treatment (i.e. those with AIDS), differential treatment makes sense. However, in such cases testing is unnecessary as the condition will be obvious after a routine medical examination. For all inmates who do not require special medical treatment (including a symptomatic HIV carriers), a program of HIV testing is not only irrelevant, it is positively dangerous. To test, and so identify some inmates as HIV positive, and then to treat as infectious only those identified, puts both corrections officials and inmates at risk from the rest of the prison population who may be, or become, carriers of the HIV virus, Hepatitis B virus, or other viral agents. The Ontario draft policy and the federal policy, which ban mandatory testing, and specify that adequate pre- and post-testing counselling be provided, should serve as a model for other jurisdictions.
It is clear that symptomatic HIV carriers need to be identified, so that medical and personal care can be offered. It is also clear that those offering the care will need to know. For those inmates who are HIV positive but asymptomatic, however, we can see no reason for disclosing HIV status beyond the prison health unit, so long as universal precautions are being followed by correctional staff.
We are aware that the prison “grapevine” system is an extremely efficient conduit for information. Little goes on in a prison that is not almost immediately known by almost all inmates and staff. This makes the confidentiality of an inmate’s HIV status difficult to maintain. However, strict guidelines for nondisclosure of HIV information at the source, the health unit, should eradicate much of the problem.
- Treatment of HIV positive inmatesAs long as universal precautions are in place, asymptomatic HIV carriers should be treated no differently than other inmates, or, to put the case more bluntly, other inmates should be treated no differently than known HIV carriers. As was noted earlier, the real danger to staff is not from known HIV carriers, it is from not treating all inmates as potentially infectious, and so not taking simple and basic precautions such as wearing gloves when there is a likelihood of exposure to blood and semen, washing one’s hands thoroughly after exposure to potentially infectious material, and keeping cuts and abrasions well covered. There is a growing body of evidence that HIV carriers are most infectious immediately after contracting the virus, but before the antibodies are produced. Thus, treating known HIV carriers more carefully (i.e. those whose immune systems have produced the antibodies) is actually counterproductive, for it protects staff against those who are less infectious, and lulls staff into a false sense of security when dealing with those who are potentially more infectious.Three of the six policies surveyed mandate just such counterproductive measures. The Manitoba policy states that special precautions are to be taken with known HIV carriers, their clothing laundered separately, and access to recreational activities allowed only “where possible” and “where the safety of others is not compromised”. The B.C. policy advocates wearing gowns, gloves and goggles where danger of exposure exists, bagging and decontamination of contaminated articles and separation of the inmate from other inmates doing transport. The federal policy, though advocating universal precautions for dealing with all inmates, also states that blood and bodily fluid precautions shall be instituted for known or suspected HIV carriers, and that disposable gloves, gowns and resuscitation equipment shall be used by staff “at their discretion”. (Since the federal policy also prohibits disclosure of the HIV status of inmates to staff, it is unclear how this policy is to be effected.)
Four of the six policies recommend segregation of suspected HIV carriers in separate cells or in the health unit until their HIV status is known (B.C., Alberta, Saskatchewan and Manitoba), though two of these (Alberta and Saskatchewan) recommend that a symptomatic HIV carriers then be released into the general prison population. This policy is not only inconsistent, it would tend to surreptitiously identify HIV carriers, and so foster discrimination.
The same problem arises when known or suspected HIV carriers are barred from food handling duties (Alberta and Saskatchewan), transported separately (B.C.) and restrictions placed on use of recreational facilities (Manitoba). These precautions are completely unnecessary, serving only to stigmatize the inmate and fuel unwarranted fears on the part of other inmates and correctional staff. In fact, to the extent that policies advocate unnecessary differential treatment of known or suspected HIV carriers, they give official voice to, and so further ingrain, the myths about AIDS and its transmission which are the primary cause of the groundless fears that prompt unfair discrimination.
In the prison setting, these fears cause not only unfair discrimination, but place the HIV positive inmate at real risk of violence. Most of the policies allow for the segregation of infectious inmates for their own protection. In conversations with a corrections official, we have heard that HIV infectious inmates are sometimes singled out for abusive and violent “justice” from other inmates. We know of no way to completely protect HIV carriers from this danger. However, education about AIDS, and the strict maintenance of confidentiality, can reduce the danger.
- EducationWith the exception of B.C.’s, all of the policies urge educational programs about AIDS for staff, and four of the policies (Manitoba, Saskatchewan, Ontario and federal) also include directives for education of inmates. However, all of the unions contacted reported that their members wanted more education about AIDS and its transmission. And a corrections official admitted to us that inmates’ knowledge about AIDS is still woefully lacking. It appears that the education offered to date has not been adequate. It is not clear whether what is needed is more education, or rather information about AIDS presented in a more factual manner, or by more trusted presenters.One union made a suggestion we believe has much merit: that for each institution, one staff member be given intensive education about AIDS, then that member be responsible for educating fellow staff about the disease. The rationale for this method is that “on line” staff are more likely to listen to, and believe, a fellow “on line” worker than videos or talks by teams of doctors, nurses or health officials who don’t have to deal with potentially infectious inmates as part of their job. We believe that much the same type of set up (with an inmate receiving training and then educating fellow inmates) might well work better for inmate education than merely presenting a video. Educated staff and inmates are less likely to respond to infectious inmates with the fear and anger that result in unfair discrimination, and sometimes violence.
- CareAlthough all of the policies mention medical care for those diagnosed with AIDS, only Saskatchewan makes it official policy to offer counselling and support for HIV infected inmates, their relatives and friends, and only Ontario has a provision for continuity of care for released offenders. We believe that the state has an obligation to offer such services, and in addition, to allow access to support groups from outside the prison system. As well, HIV carriers and persons with AIDS, in consultation with prison medical staff, should be able to participate in trials of experimental drug therapies, and to access other experimental drug therapies through the Emergency Drug Release Program set up by Health and Welfare Canada.
- Inmate self protectionSexual activity, especially anal intercourse and drug use, are both widespread in prisons and are behaviours associated with a high percentage of HIV transmission. As well, the incidence of HIV infection in prisons is increasing. None of the policies directs that condoms be issued to inmates, nor do any specify that inmates have access to bleach to disinfect needles or other drug apparatus. The argument against issuing condoms is that sexual activity is not condoned, and that other uses, such as the concealment of drugs, can be made of condoms. No argument is given regarding access to bleach.We are aware that supplying condoms is a controversial issue and that there are reasons not to supply them. Not only can they have alternative uses that negatively affect corrections staffs’ attempts to maintain good order in prisons, it is also not clear how widely they would be used. Much of the sexual activity is “dominance” related, and it is perhaps unlikely that the aggressor would take the time, or care enough for his partner, to use a condom. The argument against allowing access to bleach in the recommended 1:10 solution is presumably that it would give the appearance of condoning drug use.
We are not convinced by these arguments. The behaviours in question are very high risk, and with the relatively high incidence of HIV infection in the prison population, there is a significant risk of infection. Not to help those inmates who wish to protect themselves from AIDS as best they can is unconscionable. Its offense to moral principles far outweighs the administrative difficulties that supplying condoms and bleach might pose, and far outweighs the problem of the appearance of condoning forbidden activities. Surely, common decency and respect for human life should count for more than these.
We received five responses alleging instances in which HIV infected persons were refused dental care. These include:
- A Victoria man who was refused care both by his current dentist and by a dentist he had gone to previously. In each case he was told that the office wasn’t sterile enough. He was referred to clinics in Vancouver. He complained to the B.C. Council of Human Rights, and his complaint was settled prior to a hearing. He was awarded costs for the treatment that was refused him. (We were told by the B.C. College of Dental Surgeons that the complainant had an outstanding debt with the former dentist.)
- A Vancouver man who upon disclosing his HIV status to his dentist was told that the dentist’s office was not equipped to handle HIV infected patients. He was referred to a hospital clinic. The patient was eventually able to find a dentist who would treat him, but suffered from the delay in having the dental work performed. A letter to the dentist complaining of his refusal to treat the patient has so far gone unanswered.
- A well-known businessman in rural Ontario who lost the services of his dentist when he informed the dentist that he was HIV positive. As he badly needed dental work, he called many dentists in town trying to find someone who would treat him. He was very embarrassed at disclosing his HIV status, then being refused care. He finally found a dentist who would treat him.
As well as receiving these reports, we were dismayed to learn from individuals and from AIDS advocates that the problem was, in fact, common. One respondent in our study noted, “I have not included occasions when our clients have been refused dental care because of their HIV status because they are too numerous to document”. Another said, “Reactions of local dentists, when their patients test positive for HIV antibodies, has ranged from refusal of care to providing a basic amount of care excluding anything that could be classified as an invasive procedure”.
As a result of these responses, we undertook a more extensive survey of the status of access to dental care by HIV or suspected HIV carriers. The aim was to get a better reading of the extent of the problem, and to assess steps taken, or that need to be taken, to address it. AIDS advocacy groups in six provinces (Nova Scotia, Ontario, Manitoba, Saskatchewan, Alberta and B.C.) were contacted, as were dentists who were known to treat HIV positive patients in four provinces, the Canadian Dental Association, the B.C. College of Dental Surgeons, and the Alberta Dental Association. The results are as follows:
- Canadian Dental AssociationThe CDA is a national organization representing all dentists in Canada—eight provincial licensing associations plus the Ontario and Quebec Dental Associations. At the March, 1988 meeting of the Board of Governors, two Policy Statements were drafted, one dealing with the ethical responsibility of all dentists to treat HIV positive patients, the other outlining appropriate infection control procedures. A symposium on AIDS and Dentistry was held in the summer of 1988, and the Policy Statements were formally adopted in the fall of 1988. A letter outlining the policy was sent to all dentists in Canada, and articles explaining it appeared in CDA newsletters. All provincial licencing bodies have adopted this policy. The policy states (in part):
Dentists are the only persons who can provide a comprehensive oral diagnosis, plan overall treatment and management of patients with dental diseases or injuries and provide necessary dental services. As professionals qualified by their educational preparation and license to practice, dentists recognize a moral and ethical requirement to render necessary dental treatment to all members of the public.
Accordingly, a dentist must not refuse to treat a patient on the grounds of the patient’s HIV or HBV infection status.
- Nova ScotiaThe Nova Scotia Persons with AIDS Coalition knows of no private dentists who knowingly treat HIV carriers. No further information was able to be collected.
- SaskatchewanAIDS Regina reported that they had the names of three dentists who accept referrals. The procedure is to get the client’s physician’s name, then call the physician and have them refer to the dentist. This is done so as to prevent the dentist becoming widely known as accepting HIV positive patients, which the dentists feared might have a negative impact on their practices. They did not release the names of the dentists to us.
- AlbertaAIDS Calgary said they referred to two dentists. We contacted both dentists.
- When asked why there was a need for referrals, Dr. X said that the vast majority of dentists in private practice are unwilling to accept HIV positive patients, due to fear of contracting the virus, and ignorance of proper infection control procedures. He gets two or three referrals per week from AIDS groups, as well as many referrals directly from other dentists, who refer to him rather than treat the patients themselves. Despite being open to other patients about treating HIV positive ones, and having his name published in the media as a dentist who accepts HIV positive patients, he lost only one patient, who returned after six months. He added that, to his knowledge, there have been no complaints to the Alberta Dental Association.
- Dr. Y, a denturist, has just started taking referrals from Dr. X, so long as the work won’t involve “too much blood”. In those cases where it would, he refers to a hospital clinic where staff and nurses “know what to do and have all the sterilization equipment”. He said that staff and nurses are not as knowledgeable about infection control procedures as they should be. Dr. Y said he works with four other dentists who have treated HIV positive patients.
We also spoke to the Alberta Dental Association. They are aware that HIV positive patients have had problems accessing dental care, but are confident that measures taken, or about to be taken, will alleviate the problem. The ADA has adopted the CDA policy, and has urged all dentists in the province to follow the detailed proposals for infection control published in the CDA April 1989 newsletter. At present, if a dentist cannot treat an HIV positive patient due to lack of infection control procedures in the office, the ADA judges that the dentist’s ethical and legal responsibilities have been carried out if she or he refers the patient to a dentist who will offer treatment.
- OntarioThe AIDS Committee of London, an advocacy group, said it refers clients to 3 dental clinics, the dental school and the university hospital.The AIDS Committee of Toronto, also an advocacy group, reported that since a complaint was successfully pursued with the Ontario Human Rights Commission in 1986, service to HIV positive patients has dramatically improved. The complaint was against the Toronto General Hospital Clinic, which had refused to give a permanent filling to a person with AIDS, and had used extraordinarily stringent infection precautions for simple dental work. Though the complainant died before the case was heard, the Commission ordered that full dental service should be offered to HIV positive patients. Since then, the AIDS Committee reported receiving only one or two complaints per week, which it refers to Toronto General Hospital or to two private dentists. Their major concern now is to help HIV positive patients continue to use their own dentists.
We contacted one of the dentists who accept referrals from the AIDS Committee of Toronto. He reported that, in his experience, most dentists in private practice still do not see HIV positive patients. Though they claim the fear is cross contamination, he believes the fear of personal contamination and the fear of losing other patients are the real reasons. He reported that referrals to his office have been gradually decreasing in number. He knows of no complaints to the Royal College of Dental Surgeons. Though many of his patients felt abandoned by their former dentists, they don’t want to deal with the added stress of a formal complaint. He said that, in his opinion, the Ontario Dental Associaiton is doing a good job publicizing the Canadian Dental Association position, though the infection control procedures that they recommend are far too stringent.
The AIDS Committee of Niagara reports that the response of local dentists to their own patients who test positive for HIV has ranged from refusal of care to providing basic care, so long as the procedures are non-invasive. Most persons are referred to clinics in larger centres such as Toronto or Hamilton; however, such clinics are already overburdened with clients. The Committee has begun a dialogue with dentists in the region, and hopes to be able to provide dental care at a designated hospital.
- ManitobaThe Village Clinic in Winnipeg reported that it had done a survey of all dentists in the Winnipeg area in 1987 to locate dentists who would treat HIV positive patients. They located six dentists. Others claimed that it wasn’t worth their time to carry out the necessary infection control procedures, and said they feared becoming infected. Though the Village Clinic said that they have many complaints, they refer to only one dentist, who patients found most caring and concerned.The dentist, Dr. Z, estimates that he receives about one referral per month. In Dr. Z’s view the reason other dentists do not treat HIV infected patients is fear of contracting the virus. Dr. Z knows of no complaints to the Manitoba Dental Association. Dr. Z expressed concern that other dentists do not follow the CDA guidelines, and that the Manitoba Dental Association does not actively promote these guidelines.
- British ColumbiaWe contacted three AIDS groups in B.C.. The Vancouver Persons with AIDS Society refers to two dentists and one hospital clinic. Though they had no estimate of the number of persons referred, or the proportion of dentists who treat HIV infected patients, they prefer to refer to the two dentists as they can assure clients that nothing bad will happen. They said that the problem in outlying communities is very acute. They added that they were concerned about the response of the B.C. College of Dental Surgeons, because though courses on income tax are certified, courses on AIDS are not. AIDS Vancouver Island reported that in a 1988 telephone survey of dentists, only five said they would accept HIV positive patients. Some of the rest said they would treat their own patients if they became HIV positive, but would not accept new ones. Others refused outright. The group now refers to four dentists. AIDS Vancouver reported that many dentists now see HIV positive patients, and they have received no complaints of refusal of service recently.We contacted two of the dentists to whom Vancouver AIDS groups refer. One reported caring for ten to twelve patients who were refused care by other dentists. His biggest problem is his own staff: the heightened awareness required in treating HIV positive patients adds stress and tension to staff which, along with fear, caused three dental assistants to quit. He was also concerned that dental fees do not completely cover the cost of universal precautions, and that the B.C. College of Dental Surgeons is not proactive enough in promoting the ethical guidelines of the CDA. He did not believe that the College would discipline a dentist who refused to treat an HIV positive patient, but he said he preferred to keep quiet than to complain.
The other dentist reported that, in his opinion, the majority of dentists would not knowingly treat an HIV positive patient. The reasons he has heard are that they are “not equipped” to treat such a patient, and that they are “afraid of losing other patients”. He also cited as reasons a dislike of gays, and a belief that AIDS is a self-inflicted disease and so is their problem. His own hygienist will not treat HIV positive patients. He said he is disturbed that many patients have to go to special needs clinics at hospitals for dental care, as that gives the false message that HIV positive patients require special treatment. He was also doubtful that many specialists would treat HIV positive patients. He estimated that over the past two years an average of one HIV positive patient per day has been referred to him, and the trend remains steady. At least half of these allege that they have been refused dental care, either in person or in calling the dentist anonymously asking if they treat HIV positive patients. He said that the number of referrals has remained steady over the past two years, despite the adoption of the CDA policy on AIDS by the B.C. College of Dental Surgeons.
We contacted the B.C. College of Dental Surgeons. They said:
- that they have actively promote the CDA guidelines within the B.C. dental community, and have in their newsletter advised all dentists that it is both a legal and an ethical responsibility of all dentists in B.C. to treat HIV positive patients,
- that they have had only one complaint: by a dentist’s staff that they were informed only afterwards that a patient was HIV positive,
- that for over a year the fee structure has included payment for universal precautions,
- that to their knowledge, most specialists treat HIV positive patients,
- that they would accept and act on a complaint that universal precautions are not being used,
- that professional education credits are given for courses on AIDS, and
- that they have the power (“peer review”) to pursue a range of disciplinary measures if a dentist violates the policy on treatment of HIV positive patients.
Though there appears to have been improvement in access to dental care for HIV positive persons in Canada, a number of problems still remain:
- Persons who have been under the care of a dentist are not assured that they will not be “abandoned” when they become seropositive.
- Persons who have not been under the care of a dentist are not always able to access complete dental care in their community, without fear of being rejected.
- Some HIV positive persons are not able to receive dental care without the stigmatization of unusual and unnecessarily strict infection control procedures.
- Dentists and their staff who do comply with the CDA policy bear the burden of treating many of the known HIV positive patients.
- Dentists are placing themselves, their staff and their patients at risk from unknown HIV positive patients by their failure to use necessary infection control procedures for all patients.
We see the solution to all these problems resting squarely on the shoulders of the provincial dental licencing bodies. The CDA has done its job—it has adopted a realistic, compassionate and responsible position, and it has adequately publicized that policy. The provincial human rights bodies are doing their job: they accept complaints regarding refusal of dental care to HIV positive persons, though they have no mandate to compel adherence to CDA policy. It is up to the provincial licensing bodies to enforce the policy. We suggest, at a minimum, that provincial licencing bodies should be proactive about advising dentists that the refusal to offer dental care to HIV positive patients will be treated as a serious disciplinary infraction.
It is also up to the provincial licensing bodies to publicize the policy. We suggest:
- that full-page ads be taken out in newspapers reaching all communities in B.C.,
- that pamphlets be produced and be made available in all dental offices,
- that a poster be produced and prominently displayed in all dental offices,
The information contained in these should include:
- the fact that all dentists may knowingly or unknowingly be treating HIV positive patients,
- that it is the legal and ethical responsibility of all dentists to treat HIV positive patients,
- that when universal precautions are taken, there is no risk of HIV transmission, and
- a synopsis of the appropriate infection control procedures in language understandable to a layperson.
If such measures are taken, we hope no dentists or support staff will be afraid of HIV infection, and no patients have any reason to transfer to another dentist because their own dentist is knowingly treating HIV positive persons.
The aim of this study was to assess the scope and extent of AIDS discrimination in Canada. The study was partially successful.
It was successful in assessing the scope of AIDS discrimination; that is, in producing a picture of the various areas in which incidents of unfair AIDS discrimination have occurred, and in giving an indication of the relative frequency of those incidents by area. Had the questionnaire asked for the dates of the incidents, we would have been better able to track the frequency of allegations of unfair discrimination over time. That it did not do so was an oversight.
The study was only partially successful in assessing the extent of AIDS discrimination. The results do not support, with any accuracy, an estimation of the number of incidences of AIDS discrimination in Canada for three primary reasons. First, the inability of AIDS groups to keep accurate records of the complaints that they had received, or even to report to the study investigator the ones that they knew about, resulted in an incomplete documentation of these complaints. We simply do not know how many complaints such groups received, nor do we have any way of estimating the numbers. The second reason for the incompleteness of the data is the virtually total failure of persons who had been unfairly discriminated against but who had not complained, to contact us. Perhaps there are none of these, though we doubt that. A more likely explanation is that the distribution of the posters announcing this option was incomplete, coupled with the fact that many were afraid to report the incidences, or just could not be bothered. The third reason is the very meagre response from the French speaking community, which we do not believe indicates there is little discrimination in Quebec.
We can, however, say that AIDS discrimination is a serious problem. Thirty-three allegations have been made to human rights bodies over the past three years, despite the fact that most people did not know that AIDS is a prohibited ground of discrimination, some human rights bodies did not accept complaints from those who were or were feared to be HIV positive, many persons with AIDS or persons who are HIV positive are afraid to complain for fear of further discrimination and many persons simply do not complain—they are more concerned to get accommodation, to seek alternative sources of income or health care, than they are to take to task the person or persons responsible for the discrimination. That we documented a further 51 allegations of AIDS discrimination that were not brought to a human rights body attests to this fact. Thirty of those 51 did not engage any formal complaints procedure at all (though it should be noted that 11 of the 30 were refused entry to the U.S., and there is no formal complaints mechanism to handle their allegations).
The record of human rights bodies in responding to AIDS discrimination is improving. Some have been slow to include AIDS, HIV status and believed HIV positive status as prohibited grounds of discrimination, though all now do so. However, it does not appear that human rights bodies have been successful in publicizing the fact that AIDS and HIV status are prohibited grounds of discrimination. This is no doubt partly due to the general ignorance about human right statutes, and the lack of funding for human rights programs to get the message out. Finally, though some human rights bodies now “fast track” complaints of AIDS discrimination, not all do. Though it is clear that such programs are warranted, it is not clear that those who suffer other forms of discrimination should have the investigation or attempted resolution of their complaints delayed. Thus, funding for the extra resources to implement “fast track” programs for allegations of AIDS discrimination is necessary.
The effects of unfair discrimination on persons with AIDS or those who are HIV positive include, but are not limited to loss of income, loss of accommodation and difficulty getting access to health and public services. They also include feelings of rejection and alienation, loss of self-esteem or the fear of further discrimination. The former effects can be addressed by swift investigations of complaints to ensure adequate redress. The latter effects cannot always be countered in this way, notably when the psychological effects make it difficult for the person to lodge an official complaint. What is needed are support groups with the expertise and resources to offer help and encouragement with the registering of complaints. It appears that not all AIDS support groups have these resources.
There has been much progress recently in the response of corrections officials to the present of HIV positive inmates in prisons. Though some of the earlier policies were positively Neanderthal in the treatment recommended for these inmates, all have been or are in the process of being rewritten to reflect current knowledge about AIDS and HIV transmission. However, all of the policies still need work, most importantly in the areas of confidentiality and care of HIV positive inmates.
Access to dental care for HIV positive persons is still a problem. There does not appear to have been a widespread change in the behaviour of dentists in response to the new CDA policy. Nor has the knowledge of dentists that refusal to offer complete dental care to HIV positive patients is subject to disciplinary measures had the required effect. Perhaps over time the initiatives already taken would correct this situation. However, seropositive patients do not have time. They need dental care, preferably by their own dentist, right now, and they have every right to it. Extraordinary measures designed to put pressure on recalcitrant dentists are called for.
This study has indicated some areas in which work needs to be done in order to better protect persons with AIDS and HIV seropositive persons from unfair discrimination. However, the picture of such discrimination, and the response to it, is changing rapidly. To improve knowledge of current patterns of discrimination and identify new areas of concern, an ongoing Canada-wide study is needed. The study should correct the defects in the present study design, record incidences of AIDS discrimination on an annual or bi-annual basis, and make recommendations to respond to them.
- Efforts should be made to include prohibition of discrimination on the grounds of sexual orientation in all provincial and federal human rights statutes.
- A massive public education campaign about AIDS should be undertaken by Health and Welfare Canada and human rights agencies. The focus oshould be how the HIV virus can, and more importantly cannot, be transmitted, as well as the legal and ethical guidelines for confidentiality, testing, and a compassionate approach to HIV positive persons. The areas in which discrimination is not allowed (employment, housing, public services, access to medical and dental care, etc.) should be set out clearly, and it should be clear that any employer, landlord, dentist, etc. who does discriminate on the basis of HIV status is acting illegally. The campaign should be targeted to specific groups, such as young people, employers, landlords, government officials and service workers, as well as to the general population. Persons with AIDS, celebrities, public officials and respected colleagues should be approached to participate.
- All AIDS discrimination complaints handled by human rights bodies should be “fast tracked” for quick investigation, while the complainant can still benefit from a favourable resolution or decision.
- Funding to human rights bodies should be increased, where necessary, so that they are able to handle AIDS discrimination complaints expeditiously, and undertake public education incentives, without detriment to their other programs.
- AIDS support groups should receive sufficient funding to offer counselling and advocacy for victims of AIDS discrimination. The effect of AIDS discrimination is not limited to loss of employment or accommodation, but includes the stigmatization of AIDS victims, their loss of self-esteem and feelings of alienation. Help in dealing with these effects needs to be available, and persons with AIDS need to know where to access these services.
- All employers, both public and private, should be encouraged to develop policies on AIDS in the workplace. Model policies and practical advice should be provided by health and human rights officials.
- CorrectionsAll corrections policies should be rewritten, where necessary, to include:
- A ban on mandatory inmate testing. (Where testing is requested by the inmate, adequate pre- and post-test counselling be mandatory.)
- A ban on the disclosure of the HIV status of inmates by health care personnel, except where mandatory under provincial health statutes.
- The incorporation of all known or suspected HIV positive inmates into the general prison population.
- Access to all recreational, educational and occupational facilities, except where there is a clear risk of HIV transmission to other inmates or staff by one of the known methods of transmission.
- Universal infection control measures be made mandatory for all staff when there is a potential for exposure to the blood or semen of all inmates.
- Access by all HIV carriers to adequate medical care, including access to experimental drug therapies; counselling, outside support groups, and continuity of care for inmates who are released.
- Adequate AIDS educational programs for all staff and inmates be offered, perhaps on the “peer” model suggested.
- DentalProvincial licensing bodies should undertake educational initiatives regarding AIDS and dentistry, which would include
- Viral infection control courses for all dentists, dental assistants and hygienists. Continuing educational credits be offered for these courses.
- Full page ads in newspapers reaching all communities, pamphlets in all dental offices, and a poster prominently displayed in all dental offices.
- Federal funding should be provided for an ongoing annual or biannual study of AIDS discrimination in Canada. This study should:
- include reported and unreported allegations of AIDS discrimination during the year
- be carried out by a federal agency or non-governmental organization that has the resources to fund investigators in each province and the territories
- monitor the response of human rights bodies to complaintsnote any sectors of society where a pattern of discrimination appears and
- make recommendations to the appropriate federal department, provincial ministry or sector of society for combating recurring incidents of AIDS discrimination.
BCCLA AIDS Anti-discrimination study
Please fill out one questionnaire for each complaint. If you have any questions about this survey, please feel free to phone collect (604) 687-2919.
- Name and address of your agency:
- (a) Area of alleged discrimination (e.g. employment, education, health care, housing, public services):(b) Details of alleged discrimination (e.g. refusal to hire, to perform dental work, to rent):(c) At the time, victim of alleged discrimination: had AIDS, had ARC, was HIV+, or was a member of a high-risk group (please specify which group)
(d) Consequences for victim of alleged discrimination (e.g., forced onto welfare, unable to attend school, forced into unsuitable housing):
- (a) Reason for thinking that fear of AIDS was the basis for alleged discrimination:(b) Was documentation produced (e.g. letter, copy of policy, account of conversation)? Please specify:
- (a) Has complaint been investigated?(b) By whom was complaint investigated (possibly more than one agency)?(c) Was report of investigation produced? (If possible, include copy of report with client’s anonymity protected.)
- (a) Was complainant willing to pursue redress?(b) Nature of redress attempts (e.g. informal mediation, hearing, lawsuit):(c) Outcome of redress attempt(s) (e.g. monetary settlement, reinstatement):
- Has complaint been satisfactorily resolved?
- If complaint not satisfactorily resolved, give nature of outcome (e.g., complainant not satisfied with redress, complaint withdrawn, lost contact with complainant, complainant died before satisfactory resolution):
- Additional information about complaint which is pertinent to this study:
- Might complainant be available for contact from BCCLA? (If so, BCCLA will contact your agency.)
- Is your agency aware of other cases of unfair discrimination against persons with AIDS, ARC, etc., which are unreported, or about which insufficient information is available to include in this questionnaire? (If so, the BCCLA will make further contact with you.)
i For example, AIDS-Related Discrimination and the Human Rights Code 1971, Ontario Human Rights Commission, l988, pp. 1-19; AIDS, A Perspective for Canadians, Royal Society of Canada, 1988, pp. 1-3; and Common Barriers: Toward and Understanding of AIDS and Disability, B.C. Coalition of the Disabled, 1988, pp. 7-12.
iii There are two health care workers in the U.S. who have tested positive for the HIV virus, but for whom no high risk activity has been documented. However, one cannot conclude that casual contact was the means of transmission.