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PostPosted: 02/09/10 6:50 am • # 1 
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THIS is the status quo "some" are desperate to protect ~ Image ~ arbitrary decisions that kill people ~ in favor of the almighty profit ~ Sooz


By Zaid Jilani at 12:15 pm
Insurer Denies Life-Prolonging Treatment To Five-Year-Old Boy With Cancer

One of the worst abuses of private insurance companis is the practice of using spurious reasons to deny claims for medical treatments, which are often necessary for saving patients' lives.
 

Kyler Van Nocker's story shows that even 5-year-old kids are not exempt from this insurance company abuse. Van Nocker has neuroblastoma, which is a very rare form of childhood cancer that
targets the nervous system and creates tumors throughout the body.

Due to successful treatment in 2007, Van Nocker's cancer went into remission, giving him 12 months of pain-free life. Unfortunately, in Sept. 2008, the cancer returned, and Van Nocker was once again in need of treatment. Unfortunately, his health insurer, HealthAmerica, refused to pay for one form of treatment doctors believe could save his life (MIBG treatment) because they consider it “investigational/experimentalâ€



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PostPosted: 02/09/10 7:51 am • # 2 
Maybe someone should charge "HealthAmerica" with conspiracy to commit murder. Would that get their attention?


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PostPosted: 02/09/10 8:10 am • # 3 
I have for years maintained that universal healthcare is a right, as is the right to higher education...indeed, I personally feel that if there are any restrictions, they should be applied to the "old" and not the young...like, a $100,000 heart surgery for 80 yr. old Grandma?  Come on now...there are just so many healthcare dollars in the world, and I do believe the old should make room for the young...several hundred thousand dollars are spent every year on open heart surgeries for Seniors. Ridiculous. That said, my question is, WHY DOES THE TREATMENT COST SO MUCH??  This would seem to be a case where the "kind"
pharmaceuticals need to show their gratitude for all the patronage and dough they make elsewhere and help this child with the treatment on an "ability to pay" type thing, and the pharmaceutical could also deal with the insurance and give them a "sweetheart" deal....again done all the time...


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PostPosted: 02/09/10 8:17 am • # 4 
Would a government-run health insurance program cover expenses for drugs and treatments not approved by the FDA?  What's the current policy for Medicare and Medicaid coverage of such items?


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PostPosted: 02/09/10 8:31 am • # 5 
Cannalee2 wrote:
I have for years maintained that universal healthcare is a right, as is the right to higher education...indeed, I personally feel that if there are any restrictions, they should be applied to the "old" and not the young...like, a $100,000 heart surgery for 80 yr. old Grandma?  Come on now...there are just so many healthcare dollars in the world, and I do believe the old should make room for the young...several hundred thousand dollars are spent every year on open heart surgeries for Seniors. Ridiculous. That said, my question is, WHY DOES THE TREATMENT COST SO MUCH??  This would seem to be a case where the "kind"
pharmaceuticals need to show their gratitude for all the patronage and dough they make elsewhere and help this child with the treatment on an "ability to pay" type thing, and the pharmaceutical could also deal with the insurance and give them a "sweetheart" deal....again done all the time...
So, you'd rather just let the seniors die?  Even though those same seniors paid into a universal healthcare system all their lives?  That's colder than the status quo if you ask me.  BTW... just so you know... some of the members here are Canadians and we have true UNIVERSAL healthcare that INCLUDES seniors.  Also... just so you know... I AM one of those seniors you think should just move out of your way - and I have had two heart attacks along with being diagnosed as diabetic.  According to you, I should just fade away and not bother your "universal" healthcare so you can get your tummy tuck or nose job?  Well, I'll be sure to tell my senior buddy who died last year that he did it your way and he should be proud to have allowed you the opportunity to get a butt lift.

You can keep that "system".


  


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PostPosted: 02/09/10 8:40 am • # 6 
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gop, from the op: " ... in April 2008, the insurer approved cheaper treatment for Van Nocker that was also “experimental, ...â€


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PostPosted: 02/09/10 8:50 am • # 7 
[quote]gop, from the op: " ... in April 2008, the insurer approved cheaper treatment for Van Nocker that was also “experimental, ...â€


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PostPosted: 02/09/10 8:55 am • # 8 
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Sid, I didn't read Cannalee's post as personally as you did ~ while I know Canadians enjoy UHC, I'm willing to bet that there ARE choices made with who gets what treatment when ~ using your own example, I don't believe for a nanosecond that elective plastic surgery would ever win over life-saving surgery ~ one of your own politicos recently came the the US for heart surgery because [I think] it was an elective procedure and he didn't want to wait ~ the US faces a different problem than the Canadians, based purely on population size ~ and reality is that there ARE limitations in ANY system ~

Sooz


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PostPosted: 02/09/10 8:58 am • # 9 
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[quote="gopqed"] [quote]gop, from the op: " ... in April 2008, the insurer approved cheaper treatment for Van Nocker that was also “experimental, ...â€


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PostPosted: 02/09/10 9:11 am • # 10 
In Pennsylvania, where this young man lives, you would apparently be wrong:

Quote:
Approved Medications
Only FDA-approved medications are eligible for coverage.

Non-covered Drugs
Non-covered drugs include the following categories:
  • Drugs and other items prescribed for obesity or appetite control
  • Nonlegend drugs in the form of troches, lozenges, throat tablets, cough drops, chewing gum, mouthwashes and similar items
  • Drugs and devices not approved by the FDA or whose use is not approved by the FDA
http://www.gatewayhealthp...caid/pa/medcoverage.aspx

Do they make exceptions?  I don't know.  But that would be the same kind of arbitrary decision, whether it's by a government plan or a private plan.  Unfortunately, without coverage decisions, there is absolutely no control over healthcare costs.


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PostPosted: 02/09/10 9:15 am • # 11 
sooz08 wrote:
Sid, I didn't read Cannalee's post as personally as you did ~ while I know Canadians enjoy UHC, I'm willing to bet that there ARE choices made with who gets what treatment when ~ using your own example, I don't believe for a nanosecond that elective plastic surgery would ever win over life-saving surgery ~ one of your own politicos recently came the the US for heart surgery because [I think] it was an elective procedure and he didn't want to wait ~ the US faces a different problem than the Canadians, based purely on population size ~ and reality is that there ARE limitations in ANY system ~

Sooz
Sooz... I have heard that 80 year old grannies may not get a knee or hip replacement because the artifical joint will outlast them by a decade but that doesn't mean they're going to be denied treatment all together.  But read this line again:

Quote:
I personally feel that if there are any restrictions, they should be applied to the "old" and not the young...like, a $100,000 heart surgery for 80 yr. old Grandma?  Come on now...there are just so many healthcare dollars in the world, and I do believe the old should make room for the young...several hundred thousand dollars are spent every year on open heart surgeries for Seniors. Ridiculous.


That sounds to me like the poster seems to think "old" people are a burden and they should just get out of the way.  There'd be a riot in the streets if that were to happen in this country. As for Danny boy going to the US, although it hasn't been revealed just why he went (it may not have been "elective") - there are a lot of Canadians who are not too happy with his decision to go outside of the country to get surgery he could have had here. BUT, 1) we do recognize it was his right to do so and 2) it demonstrated quite clearly that the Canadian system doesn't have two levels of treatment - ie. one for the rich and one for the rest.  All persons are treated equally.  So Danny would have had to wait (for an angioplasty it would have been a matter of a couple weeks if it is elective) just like anyone else.

  


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PostPosted: 02/09/10 9:24 am • # 12 
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gopqed wrote:
Do they make exceptions?  I don't know.  But that would be the same kind of arbitrary decision, whether it's by a government plan or a private plan.  Unfortunately, without coverage decisions, there is absolutely no control over healthcare costs.

I understand the need for coverage restrictions ~ and it's incumbent on each policy holder to know what their specific plan restricts and limits ~ it's also important to note that exceptions ARE made ~ I'd go so far as to say "often" ~ we know the insurance company in the op made a prior exception for this young boy ~ so, to me, saying "no" now is especially cruel and is a likely death sentence for a 5yo ~ I find that reprehensible and shameful ~

Sooz


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PostPosted: 02/09/10 9:33 am • # 13 
My point, though, is that you're calling for a government-run plan when the existing government-run plan guidelines in the state in which the boy lives state that the treatment would not be covered.  There's no guarantee that the outcome would be any different for this boy under such a plan.  A government-run plan is not a fix for this kind of situation.


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PostPosted: 02/09/10 9:41 am • # 14 
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I just don't read Cannalee's post the same way you do, Sid ~ there are all kinds of scenarios where the post has merit, especially in the context of a finite number of dollars ~ who should get life-saving treatment first, the elderly or children? ~ in an either/or, one only, situation I agree it should be children ~ hopefully, that kind of moral dilemma is exceptionally rare ~ but I'm willing to bet medical ethicists would generally agree ~ I'm also willing to bet that most elderly would generally agree as well ~

Sooz



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PostPosted: 02/09/10 9:49 am • # 15 
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gopqed wrote:
My point, though, is that you're calling for a government-run plan when the existing government-run plan guidelines in the state in which the boy lives state that the treatment would not be covered.  There's no guarantee that the outcome would be any different for this boy under such a plan.  A government-run plan is not a fix for this kind of situation.


Point taken ~ I agree there are NO guarantees ~ but it doesn't budge me from believing deeply that we need a public option ~ a for-profit company is VERY likely to make VERY different decisions than a not-for-profit government plan ~

Sooz


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PostPosted: 02/09/10 10:22 am • # 16 
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Sooz,

I regret to inform I read Cannalee's post with the same feeling of indignation expressed by Sid.  



Quote:
if there are any restrictions, they should be applied to the "old" and not the young...like, a $100,000 heart surgery for 80 yr. old Grandma?  Come on now...there are just so many healthcare dollars in the world, and I do believe the old should make room for the young...several hundred thousand dollars are spent every year on open heart surgeries for Seniors. Ridiculous.
If we are to consider the matter by looking at the limited supply of money available as an indicator of priority, one might as well say something as callous as:

Quote:
...if there are any restrictions, they should be applied to the useless, rather than the useful...like, a lifetime of dependence and expense  caused by permitting the birth of a child known to be mentally of physically afflicted to the point where they will never be of any productive use to society, and will only be a burden on that society and their families for as long as they live.  There are too many healthy babies who have potential who need health care.  Hundreds of thousands of dollars being spent in neo-natal wards to keep severely defective infants alive?  Ridiculous. 

How does it sound when read that way?  Brutal?  Callous?  Repugnant?  Disgusting?  Inhuman? 

There is merit to "triaging" medical care, which is what my understanding is of the Canadian system.    I believe I understand where Cannallee is coming from, but her premise is too heavily weighted in favor of the young, and the unfortunate choice of words is beyond inhumane, inconsiderate, and insulting to any adult, much less any elderly person. 

In addition, there are great numbers of "private sector" institutions and groups that offer health care services, or help with treatment for many special needs children.  There are few to none for seniors.    The Shriners are one such group dedicating their efforts to sick children.  There are innumerable groups for research and treatment for infants and children born with illnesses, physical or mental defects.   Where there is a child, there are usually one or more adults around to provide some care for them.  There are usually some people available to "fight" for the life of a child.

The elderly are often alone in the world, while becoming less able to protect themselves or care for themselves.  They need to be as physically strong as possible because they MUST take care of themselves until they can mercifully die of natural causes, or by suicide.  It's cheaper than a nursing home.   The elderly have people who think they should just push a switch and drop dead so they won't be "tax-takers."  Never mind all of the taxes those elderly people paid while they worked. 

I shouldn't mix in, I know.  It's neither here nor there.  I, too, am one of the elderly, and this is not the first time that I've been told, on line, that the world would be better off if I just conveniently dropped dead and stopped using up so much of our precious nation's resources.  It's sounding better to me every f-ing day I remain alive in the US.    Too bad my generation didn't feel that way.  We could have maybe managed to prevent Ronald Reagan's long term care.  I mean, after all......

jd


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PostPosted: 02/09/10 10:43 am • # 17 
I also had much the same reaction as Sid to Cannalee's post.  It seemed to be an endorsement of the infamous "death panels."


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PostPosted: 02/09/10 12:21 pm • # 18 
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It's always a tough call as to using ( paying for) experimental treatment.  We all want to go to any lengths to save a loved one, and especially a child.  Sometimes, if a treatment shows real promise, thye will "give it away"  or the FDA will recommend paying if it is very promising so as not to deny care and to get better information.  Many times drugs being studied are suddenly offered to the placebo or control group because they are so effective during the trial.  Public health care will not solve this dilemma- it will continue no matter what kind of health care payment plan is adopted.


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PostPosted: 02/09/10 2:17 pm • # 19 
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Kyler does not live in PA, GOP.

I know Kyler and his family. They live in my town. I've participated in fundraisers for them & the school has collected supplies and donations for the family. He and his dad and his twin sister were at the school play a few weeks ago ( their older brother was in the play) and it was the first time I'd seen him without hair, though I'm used to seeing him with a feeding tube up his nose.

I've played with this kid. ( His brother also takes karate with my daughter, so sometimes he and his sister wind up hanging around.) He's such a sweet little boy, even when you can tell he's wiped out-most kids would be cranky, but not Kyler. I've never even seen him grumpy. He's got a smile that just lights up the room, and eyes as blue as the sky. A lovely family, who deserve better than this. 

The fact is, he wasn't expected to live this long, so ANY treatment at this point would be considered "experimental" because most kids are dead by now. That's no excuse for telling a family their child will just have to die because it's too expensive to give him a chance to live. 


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PostPosted: 02/09/10 2:25 pm • # 20 
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http://www.phillyburbs.com/news/news_details/article/26/2009/november/12/a-familys-fight.html

Paul Van Nocker's health insurance provider, HealthAmerica, informed the family in a letter dated Nov. 2 that a request to cover a course of treatment that CHOP doctors determined was in Kyler's best option had been denied because that treatment did not conform to the company's definition of "medically necessary."

CHOP is one of four hospitals in the country that treat Kyler's type of cancer. The recommended treatment, known as I-MIBG therapy, has been done at the hospital since 1988. The price tag for one round of it is about $50,000.

"I said, 'All right, if (you're) going to deny it and say it's not a medical necessity, and you're smarter than the No. 1 children's hospital in the country, you're smarter than the two doctors that are the head of the neuroblastoma department at CHOP + you must have some suggestions,' " Paul Van Nocker said.

The only alternative HealthAmerica suggested was for Van Nocker to submit other treatment options for consideration, but he was told that if any of those options are considered experimental they wouldn't be authorized. The problem, Van Nocker said, is that all possible treatments for Kyler's condition are technically experimental, because not enough patients have survived to the point he has to provide statistical data to define a standard treatment.

***********************************

After the Van Nockers appealed the decision with their insurance company and were again denied, CHOP doctors moved forward with Kyler's treatment regardless of payment and luckily found another option through the family's secondary insurer, Medicaid.

"Somehow CHOP was able to get Medicaid to cover it and they did," Van Nocker said. "CHOP was going forward whether or not it was approved, whether it was paid for or not, because this is the only chance of this child surviving. Without it, he gets to be bedridden for the next month-and-a-half to two months and, over the course of the next three to eight months, die a very slow, painful death. This treatment offers a controlled disease so that he's not living in pain on + morphine drips constantly."



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PostPosted: 02/09/10 2:39 pm • # 21 
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Here's his Facebook page, ( edited- the family is no longer requesting donations- see next post)



Last edited by Chaos333 on 02/09/10 2:51 pm, edited 1 time in total.

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PostPosted: 02/09/10 2:47 pm • # 22 
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Oops...the family now wants folks to contact lawmakers instead of making donations...(there's a cute picture of him here...)


Kyler's secondary insurance is expected to cover a portion of the procedure. But the Van Nockers are concerned because there will be more treatments to follow. They say they have already been told they won't be covered if they are in the clinical phase. With nowhere else to turn the Van Nockers are turning to lawmakers.  While they once accepted financial donations on their sons behalf they now ask that anyone who wants to help contact lawmakers about this issue.




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PostPosted: 02/09/10 2:48 pm • # 23 
Quote:
denied because that treatment did not conform to the company's definition of "medically necessary."

Ahem..... not medically necessary?
THE

KID'S

DYING

Talk about "disconnected"! These people need to be hit with a few bricks!


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PostPosted: 02/09/10 2:56 pm • # 24 
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And I just have to say, these are AMAZING parents, doing 110% to give him as "normal" a childhood as possible, when he's well enough to have a little fun. They know he may not have much time, so they really make the most of every day. 

A lesson for all of us.


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PostPosted: 02/09/10 3:01 pm • # 25 
Chaos... Thanks for bringing the story to a personal, human level. That seems to be in short supply these days.


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