Subject: [CML] Let's help someone get a
transplant ?
Hey
folks,
This article made
it's way to my "in-basket" and I dunno but I was just thinking maybe we can
write or do something to show support. It just seems that if there is
something worth trying you have to try it - no? I mean 61 isn't that
old! So what do you say folks, can we write, can we call? Is there
anything we can maybe do as a group? Let me know!
Cheers,
Cheryl
As hope fades, she fights insurer for transplant
Wednesday, September 15, 2004
BY DAVID WENNER
Of The Patriot-News
Every day, Sandy Ash gulps down pills that temporarily slow the leukemia
cells multiplying in her body.
The drugs kill her good blood cells, too, making her weaker and weaker
until she gets a blood transfusion. Deepening her pain is knowing her chance
for a cure might have vanished when her insurer refused to pay for a
bone-marrow transplant, the only possible cure for patients like her.
Ash, 61, wonders if she'll make it to her daughter's wedding Sept. 25.
In June, her doctor wanted to give her the transplant at Penn State Milton
S. Hershey Medical Center. But Ash's insurer, the Asbestos Workers Local 23
health plan, would not cover the transplant because it is experimental.
The plan "can't afford to fund experimental research," Dr. Neal Friedman,
the plan's medical director, says.
The self-funded health plan uses its own money to pay members' medical
bills. Ash and her husband, a retired asbestos worker, pay $250 a month for
her coverage.
While the kind of transplant proposed for Ash is experimental, many people
are receiving them. It is considered the only option for patients who are too
old for standard bone-marrow transplant, and it is covered by some insurers,
including Medicare and Highmark Blue Shield.
The Ashes, of East Pennsboro Twp., were stunned to discover Medicare would
have paid -- if only Ash were four years older.
"It's a sad situation when you think that in June you could have had it and
be living, and now you're hanging by a thread," Ash says.
The diagnosis:
Ash, who cleaned houses, said she had never been seriously ill until
February, when she developed a sore throat. Her doctor diagnosed it as strep
throat, but later that month, she started having trouble breathing and
walking. A blood test detected leukemia.
At Hershey, she received the standard chemotherapy that often puts leukemia
in remission. But her disease was resistant; some leukemia remained.
Dr. David Claxton, Ash's Hershey physician, proposed a bone-marrow
transplant -- the only option for leukemia patients who do not go into
remission after standard chemotherapy.
Until recently, bone-marrow transplants weren't an option for older people,
whose bodies were considered too weak to withstand the intense chemotherapy
and radiation used to kill cancer cells before transplant.
But in the late 1990s, doctors began performing the transplants after a
much milder form of preparation. These transplants, also called
"minitransplants," have enabled older and sicker patients, including some in
their 70s, to undergo transplants.
They came about after it was discovered that transplanted bone marrow,
which amounts to a new immune system, can attack the remaining cancer.
In a study in Germany, 19 patients age 60 and older were tested with this
treatment, including 15 who had acute myelogenous leukemia -- the same kind as
Ash. The cancer disappeared in 17 of the patients, and 13 were alive 26 months
later.
Claxton wrote to Ash's insurer that the medical center has "local
experience on this protocol with other patients with residual leukemia who
have done very well and who remain in remission, now more than two years after
their transplants."
A death sentence:
Without the transplant, Ash, who had no other major medical problems, would
likely die within six months, Claxton wrote in June.
However, Friedman, the medical director for the health plan, argues that
the results of the treatment for older patients are "pretty dismal," and "the
literature shows there's really not much gained by doing this."
Dr. Andrew Yeager of the University of Pittsburgh School of Medicine
acknowledges a shortage of studies showing the long-term outcome for patients,
but says he believes they are a viable option for people over 60. In fact,
patients as old as 71 have received the less-intensive transplants at his
facility, he says.
"It is no longer a rarity to do transplants in those older patients, and
the use of these low-intensity regimens has made that possible," he says.
The average age for onset of leukemia is 65 to 70, Yeager says, and denying
transplants to such patients "excludes at least half of the potentially
salvageable patients."
Researchers have said that some minitransplants can be done on an
outpatient basis, making them much less expensive than standard transplants.
But hospitals and insurers balk at providing cost estimates, and a Hershey
Medical Center spokesman said "it could easily be upward of $300,000,
depending on the complexity of the case."
On June 23, the Ashes appealed the transplant denial to their insurer. Five
weeks later, the insurer told them the appeal had been rejected. They
contacted the Pennsylvania Insurance Department, which said it could not help
because the Asbestos Workers Local 23 plan is self-funded, rather than a
private plan.
But the Ashes have continued to hope for help, writing public officials and
pursuing a federal appeal.
Last month they sought a second opinion at The Johns Hopkins Hospital in
Baltimore, which said it could offer nothing more.
Living each day:
The window of hope is closing -- if it's not already shut.
Hoping to obtain the transplant and fight about insurance later, Jerry Ash
recently proposed mortgaging their house to finance the surgery.
But he says Claxton urged the couple to enjoy their remaining time and tend
to matters such as a living will. Claxton, who responded to several e-mailed
questions, declined to be interviewed.
Ash wears a mask against infections when she goes outside, since the drugs
to fight leukemia wiped out her immune system. She must stay away from
chemicals, so her daughters clean her house.
"About all you can do is throw the wash in the washer and shut the lid and
go. It really slows you down, I'll tell you," she says.
She said she feels OK until her blood platelets drop low and she needs a
transfusion, which sometimes takes most of the day.
After each medical appointment, Jerry Ash sits at a table, surrounded by
piles of insurance and medical papers, and carefully records his wife's
various blood counts on a hand-lined chart.
Inside the refrigerator sits a mixture he makes in a blender using five
pounds of apples, two pounds of carrots, a red beet and barley grass, which he
orders from California for $128 for a two-month supply. He found the recipe in
a video titled "I'm Not Afraid of Cancer Anymore," made by a woman who says
she recovered from cancer without chemotherapy or radiation.
He hopes it will boost his wife's immune system and flush the toxic drugs
from her liver. But she's frequently nauseous, and it has become hard for her
to drink.
Jerry Ash worked with asbestos for 43 years -- installing it in buildings
until 1970, then removing it after it was recognized as a health hazard. They
always figured he would be the one to get cancer.
Meanwhile, the Ashes play phone tag with the National Institutes of Health,
hoping for a clinical trial that offers an experimental treatment -- and a
chance to live.
"The miracle might be laying right there," Jerry Ash says.
DAVID WENNER: 255-8172 or [EMAIL PROTECTED]
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