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A Cancer Patient Faces the Chaos of the American Health-Care System
by
Rosalind Lacy MacLennan,
April 27, 2005
In mid December 2004, I stood up in the middle of my
primary-care physicians waiting room, and said,
I am carrying a weapon of mass destruction in my
breast. I have breast cancer. I came here for treatment,
not for cemetery care.
At last. The receptionist looked up. After two phone
calls in advance and a polite request at the front desk
for my medical records and a referral to an oncologist, I
had broken the wall of indifference. The office manager,
for whom I had written out my requests on a form more
than an hour before, came scurrying out with what I
needed.
I had come to this office from my surgeons office,
several miles away, where I had heard my diagnosis. But
he didnt have my complete medical file or the power
to write the referral. I felt terrified and confused, but
I was following orders from my Health Maintenance
Organization (HMO).
The odds of surviving the duel with cancer now are far
greater than they were 20 years ago or even 10 years ago,
but going through the paces of the medical system is
worse than playing a game of Russian roulette. After 17
cancer-free years, my fight with a recurrence is harder
because medical insurance for doctors and patients is
chaotic with regulations.
As I left my doctors office, several other patients
followed me outside. We agreed: frustration with the
system is typical. No, they insisted, I was not out of
line or selfish to demand attention. The professionals
are so busy with forms, many dont pay attention.
Doctors and patients today are caught in a web of
bureaucracy that could cost lives. You have to take
care of yourself. You have to fight the bureaucrats to
the end, one woman told me.
To begin with, the Framers intention to
promote the general welfare in the preamble
to the Constitution did not include universal health
care. Health is an individual, free-choice matter. The
government, whether through Medicare, HMO regulations, or
otherwise, should never be in the business of
protecting me from myself or of telling a doctor how to
practice his healing art.
Too often in the past two years, Ive heard,
Dont do this. Dont do that. After
a normal-benign mammogram report in December
2003, a technician told me, Dont come back
until youve let at least 11 months go by or your
medical insurance wont cover your next breast
exam. That rule comes directly from the official
U.S. government CMS Site (Centers for Medicare & Medicaid
Services): For a woman over the age of 39, Medicare
will only pay for a screening mammography after 11 full
months have passed following the month in which the last
screening mammography was performed.
Do the politicians think my cancer is going to wait for a
photograph? Do they think I enjoy going to a radiologist
to have my breast pinched and pressed into an X-ray
machine? Am I going to overuse a test that exposes me to
radiation? On the basis of a British medical journal
report in 2001, controversy continues to spin around how
useful and accurate the test is. Nonetheless, if I detect
an abnormality why cant I go at any time or even
bypass a test and go for a biopsy?
One medical-office manager told me the governments
intention is to guarantee routine screenings for all
women. The American Cancer Society reports that
mammograms catch 90 percent of all breast cancers.
Therefore, politicians want to equalize the availability
to make sure everyone over 39 goes for the test (even
though some women under that age develop breast cancer).
To hold the medical professionals accountable, Medicare
pays for mammograms annually.
Instead of providing encouragement, the rule acts as a
deterrent. Many HMOs indirectly compete with Medicare.
Both private and public companies, therefore, are heavily
regulated. The regulation allows the insurance companies
to refuse payment to hold down costs. So,
although a radiologists disclaimer states that any
change in breast tissue within the 11-month period should
send me back for another test, I believed the narrower
interpretation of the rule.
So did my primary-care physician, who exchanged his role
as a healing assistant for that of an insurance
advisor. During my annual check-up in April 2004, he
opined that a new lump, which I had found, lay in almost
the exact spot as a benign tumor from two years ago.
Therefore, reasonably, it was scar tissue
from the biopsy.
Seventeen years before, in 1987, I had undergone a
lumpectomy to remove a breast tumor. Radiation and five
years of taking tomoxifen pills followed. Since then, I
had become athletic and vigorous, believing I fell into a
1 percent recidivism category. Rarely did I think of
cancer. I didnt have time to be sick, I
rationalized.
But what finalized my decision in my doctors office
last April was his reminder that my medical insurance
would not pay for another mammogram so soon after the
normal one in 2003. In my opinion, his
focus was on the system, not the patient me.
At that moment, I felt too intimidated to ask for another
test or even a second opinion. My husband had made a job
change. I was worried that our health insurance would
refuse to pay for what seemed an unnecessary test.
Basically, I didnt want to be labeled a
hypochondriac.
Medicare and HMO rules distort our thinking. We are
conditioned not only to believe that our health-care
providers are gods because they rely on statistics, but
also to believe that our health-care insurance will pay
for routine needs, not just catastrophic illness. We are
conditioned to be passive because we assume medical
insurance will cover everything.
At the same time, doctors, even in computerized offices,
resent filling out a glut of insurance forms to meet the
demands of government scrutiny and liability insurance.
Doctors in large practices must hire business managers to
sort out the mess of paper work. Overhead costs go up.
Consequently, doctor/patient rapport suffers, as it did
for me.
Eight months later, the benign scar tissue
had grown more prominent. When I called the primary-care
office for the required referral to the radiologist, the
receptionist, who didnt know me, suggested I wait
for my regular, scheduled mammogram at the end of
December. Panicked by the resistance, I broke through my
own conditioning and asked for a next-day appointment.
There it was, not only in my X-rays but also in the black
hole of an ultrasound screen a suspicious hard
mass stared down at me. The following biopsy and lab
reports confirmed my worst fears. This marble-sized lump,
now grown to 2 centimeters, was a return of the Big C,
breast cancer.
Enraged at myself for going along with the rules for
eight months, for denying my instincts and not
challenging the statistics, I jump-started treatment.
Assurances that breast cancer is
slow-growing, that a mastectomy could wait a month until
mid January did not impress me. Uncertainty reigns until
surgery. In full command, I demanded, Get the
cancer off my chest.
Three months later and postmastectomy, I am grateful that
aromatase inhibitors have arrived. Research advances have
saved me. I am taking a hormone treatment or aromatase inhibitor drug, which reduces the amount of estrogen produced after menopause. (Aromatase inhibitors (AIs) cut the estrogen supply made and distributed in the body.) This new drug promises me survival with possible long-range side
effects. Ill take the trade-off Im
alive.
But, at the same time, I am taking a stand against all
assumptions that cancer in any form is
slow-growing. We are not wrong to ask for immediate service.
Different grades of cancer grow at different
rates. Often, in postmenopausal women, invasive
breast cancer is slow-growing. But there are exceptions.
Some, like inflammatory breast cancer, spread like
wildfire, faster than the estrogen receptor-positive cancers. Waiting can be deadly if the cancer is estrogen receptor-negative, a more rapid growing cancer that does not respond to aromatase inhibitors and requires more aggressive chemotherapy with harsher side effects. Some rare cancers have already spread from other sites.
Ultimately, cancers have no respect for waiting.
Within the past 20 years, cancer research has made
tremendous progress. Also screening and treatment
programs are more available for poor women because of
private breast-cancer foundations. Breast cancer should
not be a death sentence, but women die of a treatable
disease. Compared to ovarian or lung cancer, for example,
breast cancer is easier to detect. So it is upsetting to
hear how a friends mother died while waiting for
insurance payments for treatment. The insurance
companies love to have you pay into the system, but they
dont want to pay out, my friend says,
describing a system that has grown dysfunctional.
Postmastectomy, I have met other women with breast
cancers that have metastasized through the lymph nodes to
other parts of their bodies. For eight months I played a
game of roulette that could have produced the same
result. In 2002, a tumor that was benign landed next to a
lymph node. If malignant, that tumor could have spread to
my lymph system. I could have been a lot sicker than I
was in 2004. I was lucky.
Today beating cancer is still a game of chance. All too
often, survival depends on long waits, a swamp of
procedures, and unnecessary written referrals for
insurance requirements. The perverted public and private
systems exhaust the professionals and the patient.
We need to break through our conditioning and accept the
facts that: (1) The U.S. Constitution does not
guarantee the right to health care. Freedom means we take
care of ourselves. The government should not be in the
business of putting our lives at risk, under the
puffed-up pretension of protecting us from ourselves. (2)
Government bureaucrats have saddled Medicare and thereby
HMOs with top-down health-care insurance regulations that
make doctors servants of the system. The rules
arent sacred.
No government body, state or federal legislature,
politician or bureaucrat is wise enough or has the
omniscient knowledge to strong-arm a decision about an
individual persons health care. An insidious
trickster like cancer requires the invisible hand of the
marketplace that serves the patient first.
Medicare/Medicaid should be abolished so that
laissez-faire care can optimize individualized monitoring. We
must transform the patients role from passive to
active: Let the patient and the doctor take charge. Get
the cancer off our chests and the government off our
backs.
Rosalind MacLennan is a free-lance writer residing in
Maryland.
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