|
Which Came
First: Social Prejudice or Fear of Disease?
from
The AIDS Reader ®
Kristine M. Gebbie, DrPH, RN
http://www.medscape.com/viewarticle/416734
"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.[1]
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. |
|
