‘‘Screw-ups’’ 89
tention to myself and my own well-being and pain.’’ Stasis persists.
Nonetheless, as we shall see, some physicians tried, even in small ways,
to remedy these problems with their own patients.
Insurance
Among the hardest aspects of ‘‘the system’’ proved to be arranging details
of health insurance coverage and reimbursement. Tim, a dermatologist
with a rare leukemia, reported that in being a patient, the difficulties
involved with insurance coverage surprised him most. ‘‘I don’t know how
patients do it when they aren’t also physicians, and don’t know the system.
It’s a full-time job.’’
Problems arose with managed care referral systems for seeing physi-
cians, particularly specialists. Scott, with an infected foot, felt that man-
aged care forced physicians and patients to be antagonistic.
Insurance companies create a system that puts patients at odds
with physicians in a very clever and deceptive process. . . . My sur-
geon said, ‘‘You need to get a new test. The insurance company will
pay for it, but it has to be prescribed by your primary care provider
[PCP].’’ My primary care doc has never heard of the test, and
is reluctant to write a prescription for it because of the liability.
I had a medical emergency, but couldn’t get to see him. If he saw
me, he would send me to an infectious disease person. But I can’t
get the referral because the people at my PCP’s office say I need
twenty-four hours to get a referral. ‘‘But,’’ I said, ‘‘I’ve already
arranged the appointment with the specialist. He’s on my insur-
ance. The PCP only needs to sign at the top.’’ But his staff is
bitching and moaning. My PCP is standing five feet away. When
they finally hand it to him, he says, ‘‘Ok, sure.’’
A sense of entitlement may exacerbate Scott’s frustrations with this com-
plex bureaucracy, but many other ill physicians shared his experiences.
Concerns surfaced as well about whether insurance companies would
maintain confidentiality. Physicians often feared submitting medical bills
that could disclose diagnoses to insurance companies and human re-
sources departments. Especially given computerized databanks, informa-
tion might not be kept confidential, and could impair present and future
employment. Those with HIV faced particular problems, and most ini-
tially paid out of pocket for their medical care rather than submit claims to