Re: OT - Fighting cancer, fighting the system
- From: VicXnews <news@xxxxxxxx>
- Date: Sun, 17 May 2009 23:02:02 +0000 (UTC)
"Alson Wong" <rasvp@xxxxxxxxxxxxxxxxxxxxx> wrote in
news:8T%Pl.30878$hX2.7013@xxxxxxxxxxxx:
http://www.latimes.com/news/local/la-me-lopez17-2009may17,0,6974320.colum
n From the Los Angeles Times
STEVE LOPEZ
Fighting cancer, fighting the system
It shouldn't be this hard to get the healthcare you seek. A sister's
cancer and son's mugging illustrate what it takes.
Steve Lopez
May 17, 2009
My sister Debbie was in pretty good spirits, considering that we were
headed to the hospital for her third brain surgery in a year.
As we crossed the bridge into San Francisco, she joked and talked about
this and that. Her friend Fran was along for the ride, and so was my
sister's son Dan, a Marine just back from Iraq.
I thought about the irony of Dan's returning from war unscathed while
his mother gets hit here at home, stalked by a killer that came at her
out of nowhere. It began three years ago when she was diagnosed with
ovarian cancer. A year ago, the cancer spread to her brain.
Through it all, Debbie has kept her spirit. She's been a motivational
speaker for new cancer patients; she's helped organize fundraisers for
cancer research; and she's been the primary caretaker of our ailing
parents, including a father who has had three strokes in a year.
This is life, I keep telling myself. Medical maladies, comfortable
routines thrown into disarray, mortality creeping ever more into our
consciousness. The only certainty is that none of us knows what will
come next.
Earlier, as I made arrangements to check on Debbie and other family in
the Bay Area, my travel plans had changed rather suddenly. My son, 29,
was mugged and seriously injured in Philadelphia. He was rushed to the
emergency room, where doctors referred him to another hospital for
reconstructive face surgery. That hospital, Temple University, turned
him away. My son just completed graduate school, hasn't found work yet
and has no health insurance. Sorry, the hospital said, according to my
son. No insurance, no treatment.
Another hospital, at the University of Pennsylvania, was more
accommodating. My son was told he could apply for medical assistance and
a program for crime victims, but the processing could take forever.
I checked with my doctor in Los Angeles, Paul Toffel, who said that if
my son's bones weren't reset within two weeks, he could suffer permanent
damage. Toffel called a colleague in Philadelphia at the same time I was
e-mailing my son's doctor, saying I would pay for the surgery upfront if
necessary while the claims were considered. The surgery was performed,
my son is recovering and no bills have arrived. Yet.
It doesn't have to be this difficult, of course, to get proper care when
you're sick or injured. But we've got an insane system, protected by
powerful lobbies that put dollars ahead of health.
President Obama seems to have lost the nerve to follow through on his
onetime support for a single-payer universal healthcare system. Now that
he's elbow-deep in the muck, with vested interests swarming like
leeches, it's not clear what he wants or how long the American public's
overwhelming desire for change will be ignored.
My sister, who has been wading through the insurance morass to figure
out what care is available to our recovering father, had her own issues
with Kaiser regarding her cancer. When the disease first metastasized to
the brain, and a lemon-sized tumor was removed by conventional surgery,
her doctor recommended she follow up with whole-brain radiation at
Kaiser.
I spoke to some of the nation's leading oncologists, who told me they
would use gamma knife surgery instead because it didn't carry the same
risk of cognitive loss as whole-brain radiation. But Kaiser didn't have
the equipment to do the more expensive gamma procedure, and it took some
doing on my sister's part to push for a referral to UC San Francisco
Medical Center.
That surgery went well, and Tuesday, my sister was back for a second
round of gamma, this time to zap a tumor in her frontal lobe. A nurse,
Lisa Mannheimer-Miller, fitted Debbie with a brace that was screwed into
her skull to help direct the beams of radiation. It was painful to look
at, but my sister had a smile on her face, strong as ever.
Mannheimer-Miller told me she'd had a gamma patient two weeks earlier
who discovered the day before surgery that Blue Shield had denied
coverage.
"Oh, I was furious," said Mannheimer-Miller, who called Blue Shield to
plead for coverage.
Does she do this often with health insurers?
"I do it all the time," the nurse said.
At least someone's got a little gumption.
When Blue Shield rejected her argument, Mannheim-Miller called KPIX-TV
news in San Francisco. A reporter interviewed the patient, Shelly
Andrews Buta, and her two UC San Francisco surgeons -- Penny Sneed and
Michael McDermott, who happen to be my sister's doctors.
Blue Shield officials had told Mannheim-Miller, and later me, that they
recommend whole-brain radiation rather than gamma (which happens to be
more expensive) for patients with more than three tumors. Buta had 13
small ones. Blue Shield also said, according to KPIX, that gamma does
not increase survival rates.
I'm no doctor, but I know enough to say that a standard of three tumors
seems arbitrary. And although there isn't enough research yet on
survivability, there is less chance of cognitive loss than with
whole-brain radiation. Sneed told me that in Buta's case, she was
already suffering from partial paralysis because of the tumors, and the
lower dosage of whole-brain radiation might not have been adequate to
destroy the cancer quickly enough.
Buta, a divorced mother of two, is 45 and lives in Chico. In a perfect
irony, she is a hospital social worker, helping patients sort through
their healthcare options. Her own hospital had recommended gamma in her
case, she said.
Clearly, Buta is a very sick woman. In addition to the brain tumors, she
has a lesion on her lung and is receiving chemotherapy. It can be argued
that we spend far too much money keeping terminally ill people alive.
But as Buta put it in our conversation, don't we owe it to younger
patients to give them their best shot at an extended life?
When Blue Shield didn't budge, two of Buta's friends came through. One
used money from a home equity line of credit and wrote a check for
nearly $30,000, and the other put several thousand dollars of the bill
on an American Express card. Buta had the surgery, which went well, and
is hoping Blue Shield reconsiders and her friends get their money back.
In my sister's case, Kaiser offered no resistance this time on the UC
San Francisco referral. In the radio surgery center, Sneed showed us a
computer image of the tumor, a milky white blotch about 1 centimeter in
diameter. Then Sneed and McDermott helped my sister onto a contraption
that looks like an MRI machine. She lay her head back and closed her
eyes, and in roughly 30 minutes the gamma rays destroyed the nucleus of
her tumor.
An hour later we were in the car and headed back to Contra Costa County
and the house we grew up in. My sister slept for 19 straight hours and
woke up smiling and chipper, happy that it was over, and hoping for the
best.
steve.lopez@xxxxxxxxxxx
things have to change...I've been lucky my wife was in a union so insurance
hasn't been a problem and shouldn't be until Medicare kicks in but I have
no insurance as well as one son...
as for getting treatment...it's hard in the states...I'm waiting for an
appointment for another brain scan for my wife but there is only one 3t
magnet in town and last time it took a month...in the mean time her discs
are bothering her but the Doctor wants to start from the beginning so she
can suffer in pain everyday...he thinks he knows more than the Brain Tumor
board at UCLA...the rest of the nuerosugeons here 'know' they know
more....that's why their IQ and golf handicap are often similar...
as for referrals you have to do what I did...find the doctor you
need...contact him/her directly and then go to a different doctor and
ask....can you do that?...when they say no...you should go were they
can...I did...now I'm back to the same doctor for the disc problems and he
says why don't I throw her in a car and take her back to UCLA...his exact
words...just a little professional jealousy I'm guessing...
when someone with terminal illness the last thing they need to do is have
to worry if you can get the right care,can you get there and how will you
pay for it...without it all killing everyone around you trying to learn
what local doctors refuse to(Las Vegas)
Like I've said before thank God for LA and UCLA...I can't thank the people
of CA enough...I still get faster answers from UCLA than local doctors
end of rant...
.
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