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THE ORANGE COUNTY REGISTER
Wednesday, June 19,
1996
MICHELLE NICOLOSI A year and three days ago, Margie Dickinson got news she
never expected to hear. She exercises. She eats right. "You know the 20
things you're supposed to do not to get cancer? I did them all," she said.
But on June 16, 1995 -- the date comes readily, memorized like her
daughter's birthday or a wedding anniversary -- Dickinson learned she
had an insidious cancer that would probably kill her, and kill her soon.
It is called nonovarian ovarian cancer because it had characteristics
of ovarian cancer, though there was no tumor in the ovary, doctors said.
Dickinson, 49, of Tustin did not know then that she was in for more
than one fight for her life: one against her deadly cancer, the other
against Blue Cross of California, which refused to pay for the treatments
her doctor prescribed.
Blue Cross officials refused to comment on Dickinson's case, or on the
company's policies governing denial of care.
In October, Dr. Louis A. VanderMolen recommended high-dose
chemotherapy, a chemical cocktail so potent it would destroy her bone
marrow and require that her stem cells be replaced. The treatment costs
around $100,000.
Though studies haven't proved whether high-dose chemo could work on
Dickinson's cancer, they indicate it might help her live longer,
VanderMolen said.
Without it, he said, she would certainly die.
Dr. Robert O. Dillman, head of Hoag Memorial Hospital Presbyterian's
Cancer Center, agreed. "Her best chance for long-term control of the
disease and cure, if that is possible, would be . . . high-dose
chemotherapy."
Dr. Kim Margolin at the City of Hope cancer department concurred. All
three doctors wrote letters asking Blue Cross to approve the treatment.
In November, Blue Cross turned down the request, calling it
"investigational," Dickinson's correspondence shows.
"Blue Cross said we'd rather let you die," Dickinson said.
Dickinson _ a patent attorney accustomed to fighting in the courts _
didn't take no for an answer. She got the treatment after a federal judge
granted a preliminary injunction preventing Blue Cross from denying
coverage.
She had two rounds of high-dose chemo this past spring; she does not
know yet if the treatments were successful.
Doctors say Dickinson's case sheds light on a dilemma facing many
patients with diseases where there is little science to show which
treatments work best.
"Just about any treatment for this cancer is going to be
investigational," VanderMolen said.
"Standard treatment in ovarian cancer is awful," said Dr. Linnea Chap,
clinical instructor and director of the ovarian research program at the
University of California, Los Angeles. "It really doesn't have much
benefit."
Most ovarian-cancer patients who relapse after successful chemotherapy
die within two to four years.
Doctors hope high-dose chemotherapy with bone-marrow transplant --
a proven treatment with some other cancers -- will help ovarian-cancer
and breast-cancer patients live longer.
No studies randomly assigning breast- and ovarian-cancer patients to
standard chemotherapy or high-dose chemotherapy have been completed, so it
is unknown whether one treatment works better, experts said.
Small studies comparing results of cancer patients who receive
high-dose therapy to past patient experience with standard chemo show
improved response in those who get high-dose, but those results may be
skewed by the way patients are selected or other variables, researchers
said.
"There seems to be a benefit, but there are many criticisms. . . . I
think the criticism (of the studies) is very valid," said Dr. Wendy Hu,
who is researching high-dose chemotherapy in ovarian-cancer patients at
Stanford University Medical Center in a National Cancer Institute-backed
study of high-dose chemotherapy and ovarian cancer.
"Have we cured any (breast- cancer) patients (with high-dose
chemotherapy)?" asked Dr. Winston Ho, director of UCI Medical Center's
bone marrow transplant program. "The answer is not known. We think the
benefit is there, but there's still a big question mark.
"For ovarian, we are in the same circumstances. . . . What is the role
of high-dose chemotherapy? We don't know."
Many HMOs and insurance companies don't cover "investigational"
treatments, leaving patients with little-studied diseases no options
beyond standard treatments that have failed, said Dillman at Hoag.
Cigna, PacifiCare and Blue Shield officials said they cover
investigational therapies when they're deemed medically necessary, when
nothing else is available or when there is evidence the treatment might
work better than standard therapies.
Blue Shield will pay for patients to participate in clinical trials
studying investigational treatments, said Dr. Al Martin, corporate medical
director for Blue Shield of California.
Dickinson's correspondence from Blue Cross states "investigational
forms of treatment are excluded from benefits." Officials would not
elaborate.
Dillman said no one knows the benefits of high-dose chemotherapy in
ovarian-cancer patients. "If you know that what you normally will do isn't
going to work or has failed, does that mean you simply do nothing, or do
you try new things? Sometimes investigational treatment is clearly the
only option."
For these patients, he said, "I don't think there's any question the
insurance company should pay" for investigational treatments.
Ho at UCI believes it is unfair that HMOs are, in essence, funding
research when they're forced to pay for investigational treatments.
But, he said, he is glad political pressure and large court judgments
have pressured many into paying for high-dose chemotherapy in
breast-cancer patients, because otherwise doctors would not be able to
explore whether the treatment saves lives.
"I don't think they (insurers and HMOs) should be punished," said Ho.
"But if they don't pay for the treatments, how are we going to get
research done? Who pays for it? The government is no longer paying for it.
The hospital can't pay for it. I can't pay for it. The patient can't pay
for it."
And if no one pays, science may stop in its tracks, Ho and Dillman
said: Researchers will never learn new ways to treat diseases for which
there is no known cure.
"How are you going to obtain proof if you never allow a patient to be
treated?" Dillman said. "If you say we don't pay for investigational, you
never change the therapy, you never go forward."
"It's a major problem," said Dr. Mary Territo, director of the
bone-marrow transplant unit at UCLA's Center for Health Sciences.
"There has to be some mechanism to allow for advancement. There's no
system in place at this point to allow for that."
Fifteen years ago, doctors faced with patients for whom there was no
known treatment "would have treated a patient with whatever was likely to
work," Dillman said.
"We'd be continually trying new things. Fifteen years ago, no one
batted an eye that that was supposed to be paid for," said Dillman.
The "reimbursement obstacle" is harming patient care, because it means
these patients are often offered standard treatments that don't work, and
aren't offered investigational treatments that might, he said.
Because of this "obstacle," many patients _ such as Dickinson _ are
forced to hire lawyers and sue to get the care they want.
"That litigation can have an impact," said Dr. Gifford Boyce-Smith,
medical director of Cigna Health Care of Northern California.
Boyce-Smith said lawsuits and other pressures have made some therapies
_ such as high-dose chemotherapy for breast-cancer patients _ more
available.
A recent report by the federal General Accounting Office found that 12
of 12 insurers surveyed routinely cover high-dose chemotherapy for
breast-cancer patients.
The insurers said their decision to pay for the therapy was based not
on science, but on fear of litigation and bad publicity.
Martin of Blue Shield said a panel at his company recently reviewed
scientific evidence of the known benefits of high-dose chemotherapy for
breast cancer, and found no clear benefit. But Blue Shield covers the
procedure partly because of the threat of litigation, he said.
"We are paying for high-dose chemotherapy for breast cancer because
there is so much confusion, so much controversy and court activity that we
felt we had to."
Dickinson said she knows high-dose chemo has not been proved any better
than standard chemo, but considers the high-dose therapy her only hope.
"We know for a fact that if we don't attempt something she's going to
die," VanderMolen said.
"Can we be sure if she gets the treatment she will live? No," said
Dickinson's attorney Scott Mohney. "But the alternative is to leave
(patients) without hope."
But Martin said many patients fail to see another side of the issue:
The high-tech hope offered them may not not be superior to standard
therapies, and might be worse.
"Suppose I put the question another way: Is it possible a person would
die sooner with more pain and suffering from high-dose chemotherapy? We
don't know. It may be that there's more of a chance of death or disability
or pain or suffering from high-dose chemotherapy."
Patients' blind faith in cutting-edge technology is misplaced, Martin
said, and sometimes nurtured by doctors enthusiastic about their science
and the chance that it might offer a cure.
"I think the patient perception is influenced by the physicians. . . .
Very often people who are in the forefront of investigating a new
treatment become proponents of it and want to see it paid for."
Deciding who gets treatments "is a dilemma," Boyce-Smith said. "We're
in a tough situation. Who gets to define hope?"
A LOOK AT THE
OVARIAN CANCER THE DISEASE One of every 70 women will develop ovarian cancer.
Women diagnosed in the early stages have a significantly better chance
of surviving after treatment than women whose disease is more advanced.
The vast majority of ovarian cancers _ about 75 percent _ are detected in
the later stages of disease.
The disease causes few if any symptoms. Among the few symptoms that can
appear in the early stages: abdominal swelling, vague gastrointestinal
discomfort, pelvic pressure and pelvic pain.
No one knows what causes ovarian cancer, but some women stand a greater
chance of getting the disease than other women, especially as they get
older. Women with a family history of ovarian cancer or who have had
breast, endometrial, colon or breast cancer are more likely to develop
ovarian cancer, as are women who have never given birth. In rare cases, a
genetic disorder may cause the disease.
There are mixed findings on whether fertility drugs increase the risk
of ovarian cancer.
Taking birth control pills reduces the risk significantly.
SCREENING Three tests are commonly used to screen for ovarian cancer:
pelvic/rectal examination, vaginal ultrasound and a specialized blood test
called CA 125 that picks up evidence of tumors.
The tests, however, will not always detect early-stage disease, and may
even give the same readings if given to healthy women.
TREATMENT All women with ovarian cancer should undergo surgery _ performed by a
qualified gynecologic oncologist _ to evaluate and stage their tumors. The
surgery usually involves removing one or both ovaries, the uterus, the
cervix and the fallopian tubes.
As much tumor as possible should be cut out to give chemotherapy a
better chance of killing off any remaining cancer. Six cycles of
chemotherapy are the standard for women with advanced-stage cancer.
Some doctors do follow-up surgeries to check for new disease, but the
practice is controversial. Another controversial treatment is high-dose
chemotherapy, which is so potent it destroys the patient's bone marrow,
making bone-marrow transplant necessary.
RELAPSE A small percentage of patients may benefit from another cancer-removing
surgery. Chemotherapy is also given again, but has not been shown to
improve survival. Source: The National Institutes of Health Consensus
Statement on Ovarian Cancer; Dr. Winston Ho, director of UCI Medical
Center's bone-marrow transplant program.
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