Death Panel in action
Ray OHara
LOOKING at Kyler VanNocker, whose fifth birthday was Monday, it's impossible
to fathom that he could die from the disease he's battling.
He's bright-eyed and energetic as he tears around the house he shares in
Edgewater Park, N.J., with his parents, Paul and Maria, and siblings Kaden,
6, and Anelise, 3. He's just as active at pre-school, where he's learning
his numbers and the alphabet.
But the truth is, Kyler has neuroblastoma, a rare and deadly form of
childhood cancer that attacks the nervous system, creating tumors throughout
the body. Diagnosed at 2 1/2, he endured more than a year of treatment at
both St. Christopher's Hospital for Children and at Children's Hospital of
Philadelphia.
His longest hospital stay lasted almost seven months, during which he nearly
died twice from complications that caused kidney failure, as well as heart,
lung and liver disease. Finally, he went into remission in September 2008
and reveled in a healthy year blessed with the mundane miracles of
childhood.
And Paul and Maria allowed themselves to exhale.
Ten weeks ago, routine follow-up tests indicated that Kyler's cancer had
returned. This time, his treatment options are few, since recurrent
neuroblastoma brings with it an entirely different set of medical
considerations than the ones associated with an initial diagnosis.
Kyler's CHOP oncologist, Stephan Grupp, says that Kyler needs a treatment
called MIBG therapy, in which a radioactive drug, delivered intravenously,
travels to tumor sites, slamming them with radiation.
Depending on how Kyler responds, he may need up to three rounds of MIBG to
knock his cancer back into remission.
MIBG is "less toxic than chemotherapy, and is usually tolerated well by
patients," says Grupp, a world expert in neuroblastoma, thanks to CHOP's
status as a national referral center for kids with the rare disease. MIBG
therapy is the only effective treatment available to Kyler at this stage of
his illness. Without it, he won't live to see his sixth birthday.
Unbelievably, Kyler's insurance carrier, Harrisburg-based HealthAmerica, has
denied coverage for the treatment, which it considers
"investigational/experimental" because there is "inadequate evidence in the
peer-reviewed published clinical literature regarding its effectiveness."
The therapy is not approved by the Food and Drug Administration, another
criterion that HealthAmerica requires.
"It's considered experimental because not enough kids with recurring
neuroblastoma live long enough" to become candidates for MIBG, says Paul
VanNocker, 44, a heavy-industrial-equipment salesman (Maria, 37, is a
homemaker). "So, really, all treatment at this stage of Kyler's disease is
considered experimental."
Only about 650 children in the United States are diagnosed each year with
neuroblastoma. Half of them, including Kyler, have the most lethal form of
the disease. So it's tough to study a large enough cohort of patients like
Kyler to yield research results that HealthAmerica might consider valid.
But that doesn't mean MIBG is ineffective.
"It's considered the standard of care in Europe and the United States for
recurrent neuroblastoma," says Grupp. "It's not an unproven treatment with
no basis in medical science. Actually, the results are often very good."
Paul VanNocker appealed HealthAmerica's decision, which once again denied
MIBG.
"They have a plan for Kyler," says Paul angrily. "Their plan is for him to
die."
HealthAmerica spokeswoman Kendall Marcocci told me that she was not
permitted to divulge the amount of money the company has paid so far for
Kyler's treatment, but Paul VanNocker says that the figure is between $1.6
million and $1.8 million. He was not sure what Kyler's MIBG therapy would
cost, since it's unclear how many MIBG treatments Kyler might require, but
Grupp says that the treatment is actually less expensive than other cancer
therapies.
Which seems to support Marcocci's contention that HealthAmerica has declined
Kyler's MIBG therapy not because of its cost, but because of its
experimental nature. Marcocci wouldn't discuss specifics of Kyler's case but
said the company isn't in the business of treating patients; it instead
applies a "medical-based-evidence approach" to determining whether a
requested treatment is a covered benefit. Except that, by denying the only
effective treatment available to Kyler, HealthAmerica has usurped the
opinion of the doctor who knows what Kyler needs to survive.
Sorry, but that absolutely puts the company in the business of treating
patients.
I have to say, when I hear people fret that a public insurance option would
take medical decisions out of doctors' hands and place them in the mitts of
bloodless bureaucrats, I have to scratch my head.
Do they not understand that bloodless bureaucrats are already in control?
And that the "death panels" everyone fears already exist in the insurance
industry?
To deny Kyler coverage is to prescribe his death.
Last week, CHOP agreed to proceed with Kyler's first MIBG procedure,
assuming that Medi-caid will pick up the tab. He withstood the procedure
well and is back at school, happy to be among his playmates again.
If Medicaid doesn't come through, the VanNockers have no savings to pay for
additional MIBG procedures that Kyler might need to stay alive, because the
out-of-pocket costs associated with Kyler's illness have left them bankrupt.
Paul estimates that he and Maria have spent "well over $60,000" of their own
money - exhausting cash savings, IRAs and almost every asset but their home
to pay expenses not covered by insurance.
"If Kyler can't have MIBG, he will have to enter hospice care," says Paul.
"He'll have a good month, and then he will lose the ability to walk. Then he
will become bedridden. And then he will die a slow, agonizing death."
MIBG is the only option to postpone that terrible possibility for as long as
possible.
But the death panel's decision, it seems, is final.
Smithee
> http://www.philly.com/dailynews/columnists/ronnie_polaneczky/78297217...
Ray, you're just one of those liberals. "Waah!' Waah! My kid is
dying! Waah! Waah!" Liberal whiner! Don't you liberals understand
that what's important is that millionaires like Curt Schilling gets
tax cuts, not that dying children get health care? THAT'S what's
important in America, dammit!
Polarhound
> The therapy is not approved by the Food and Drug Administration
The truth comes through, albeit ELEVEN paragraphs down, well after the
Chicken Littles like yourself stop reading.
If the FDA hasn't approved it, then neither will your precious
Socialized Medicine clusterfuck cover it.
I do hear they are starting to cover rectalcranial inversions though..
perhaps you should look into that procedure.
mr dude@harvarduniversity.edu
>
> The therapy is not approved by the Food and Drug Administration, another
> criterion that HealthAmerica requires.
The Imperial Federal government kills another child!!!
Wait till Obama care, kids will be dropping dead of the common
cold!!!!
mr dude
MuahMan
"mr du...@harvarduniversity.edu" <fost...@gmail.com> wrote in message
news:e138c3e6-f010-405c...@u9g2000yqb.googlegroups.com...
You don't make $200K in your mom's basement so you won't have to worry about
higher taxes.
mr dude@harvarduniversity.edu
>
> You don't make $200K in your mom's basement so you won't have to worry about
> higher taxes.
I make over $2000,00 in your Mom's basement.
I swear besides her Meth skills, she is a Super Hooker!!!
mr dude
Mike/Speeed
Mike/Speeed
"MuahMan" <mua...@gmail.com> wrote in message
news:4baad6f1$0$9597$c3e...@news.astraweb.com...
I do.........., but seeing that I have to pay higher taxes, I won't hire any
new employees next year. Whoopsie! Another job goes away under Barry
Hussein's watch....