Which Came First: Social Prejudice or Fear of Disease?
from The AIDS Reader ®
Kristine M. Gebbie, DrPH, RN
"Survey of Canadian dentists reveals that 16% would refuse to treat HIV+ patients," reads a story reported in the April issue of the American Journal of Public Health. The only good news in the survey is that people with HIV infection are better off than those known to be injecting drug users (35% would refuse to treat them) or infected with hepatitis C (36% would not treat).
Access to care has been a core policy concern in the HIV epidemic since the disease was first recognized nearly 20 years ago. Early on, we were moved to impassioned public advocacy by stories of dinner trays left undelivered outside hospital rooms; dying patients surrounded by what looked like lunar exploration teams in full protective gear; reports of dozens of calls made to secure one appointment for dental care; nursing homes saying "we can't manage care that complicated." The pain of the disease was magnified by the pain of rejection, not only on the part of an uninformed public but also by those supposedly committed to the care of all those in need. Such stories embarrassed professional associations, which quickly moved both to adopt policy statements recommending care and to develop educational programs for their members. In the cities with the largest numbers of infections, special care units evolved, providing AIDS patients a level of compassionate care that matched the best rhetoric of professionals everywhere. And even in areas with limited numbers of cases, the extreme prejudice was overcome by education and supported by legal changes such as enactment of the Americans With Disabilities Act.
The new Canadian survey is not highlighted here to pick on Canadians; their experiences and perspectives are probably not radically different from many in the United States. (It may be meant to pick on dentists just a bit: nondiscriminatory dental care has been reported as much harder to find than many other kinds of health-related services.) For the most part, this survey acts as a reminder of how far we still have to go in achieving comprehensive access to care for all who need it, when it is needed. Implicit in the refusal-to-treat stories (and occasionally explicit in comments of nurses, doctors, dentists, and others) is the very human fear of disease and death. A small but real chance exists that in the course of treating someone with a viral, blood-borne disease, the caregiver will acquire the disease. Barrier protections are breached from time to time, and not all cases of occupationally acquired HIV infection have occurred because of careless klutzes.
While it may be true that the decision to practice a health profession carries with it the acceptance of risk of disease, this risk is extremely low in the late twentieth century and had been largely forgotten before the emergence of HIV. For example, little outcry issued from the numbers of occupationally acquired hepatitis B infections, even up to the time immunization was being implemented. And many professionals feel that current reorganization of health care financing and delivery is a breach of the societal contract that requires of them an extraordinary level of service carrying some risk in exchange for a high level of autonomy, dignity, and respect.
What is more troubling is the probability that the refusal to treat those who inject drugs or who are infected with hepatitis C and HIV is a manifestation of social prejudice rather than fear of disease. Both of these viral diseases are associated with injecting drug use, a chronic relapsing condition that many still consider more a sign of moral weakness or personal indulgence than a symptom of a treatable condition. The consistent underfunding of drug treatment, the unwillingness to plan prevention programs such as syringe exchanges, and a tendency toward simplistic slogans ("Just say no!") suggest a continuing societal blind spot. People who are known to do drugs, or people who get diseases that might mean they do drugs, are likely to become non-people, disposable people, neglected people. In the rapidly evolving world of care, payment for and treatment of mental illness and addictions remain separate from other payment and treatment systems. Even Congressional action in support of equity seems to have had little impact on this segregation.
It is not at all clear that primary care providers are doing a better job of early detection and prevention of problems in these domains. And the demographics of the diseases continue to illuminate the confluence of lower income, which is associated with poorer access to care, and racial/ethnic minority status, also associated with poorer access to care. With no proof of causality, those patients more likely to be at risk for HIV or hepatitis C, more likely to be injecting or at risk of injecting drugs, and more likely to have trouble finding care of any kind are also more likely to be the ones who have experienced or will experience some kind of societal discrimination.
Many of those who are deeply committed to reducing the impact of HIV and providing treatment to infected individuals work in the midst of an HIV-friendly world. They know that no one is turned away from their doors, that their phone lists include agencies and individuals that can access referrals for all types of additional services, and that people otherwise rejected will find a safe haven with them. They also know, however, that their hybrid world is limited. While there are referral numbers, they are all too few, and the wait for service may be extremely long. For some patients lacking insurance, housing, work history, or family support, the package of services that can be assembled may be minimal. And every additional diagnosis, concern, or life problem only adds to the burden.
Until both payment for care and access to care are unconditionally assured for every one, there is no end to the need for advocacy for both. By many standards, both payment and access problems have been solved in Canada, with universal coverage a matter of public policy and public funding and a reasonable supply of health professionals to provide the care. Yet as the survey reported in April reveals, the attitudes of individual professionals about behavior or disease status can subvert even these policies. Our ongoing advocacy for access to care must include an ongoing process of education for health professionals. We cannot provide any member of the health professions with an absolute guarantee of a disease-free life, but we can make certain that all reasonable precautions are taken. And we can make every effort to be certain that those who pursue health professions understand their contract with society does not allow discrimination of the sort that many HIV-infected individuals and injection drug users continue to experience.
Dr. Gebbie is Director of the Center for Health Policy and Health Services Research, Columbia University School of Nursing, New York, N.Y.