Sunday, November 2, 2008

McCain verses Obama

Senator John McCain was in Columbus on Friday. While in the hospital Tyler read and saw a lot about Senator McCain and became very impressed. We decided to go hear him speak.

I actually went because Arnold Schwarzenegger was there. I assumed Arnold came to Columbus because he heard about my marathon run and wanted to meet me...and possibly ask me to go lifting. But oddly he never contacted me.

Tyler picked up a McCain sign for our front yard. This morning we woke up to see the McCain sign was stolen, and replaced with about 50 Obama signs. Funny. very, very funny.

Political views are not the goal of this blog, but I thought it was an opportunity to mention the elections effect on childhood cancer. Unfortunately the answer appears to be "not much". Both candidates have their plans on their web sites. Both programs show an underlying misunderstanding of childhood cancer. Their focus is reducing costs through streamlining treatments, giving more people access to care. I understand the worthy intent, and it makes sense in some cases. But not childhood cancer. In fact, this misunderstanding is a central cause to the problems with childhood cancer research.

Children and teens primarily only get very rare cancers that are unique to their age group. None of these cancers individually have a very high numbers of cases. It is not "cost effective" to treat these kids individually. Therefore, in the interest of cost cutting and efficiently, the cancers have been grouped together and protocols created. Treatment decisions (and insurance payments) are than made based on averaged statistical data from these bundled protocols. There is little time or resources to focus on the individualize child.

In his best selling book, “How Doctors Think”, Dr. Jerome Groopman of Harvard Medical School explains that doctors are trained to quickly categorize patients into these protocols. Rather than trying to understand individual symptoms, the diagnostic questions are designed to quickly classify patients into larger groups that are easier to manage. It is only through this system that doctors can manage the higher number of patients that they oversee today. He further states that this is the single greatest factor in misdiagnosis and faulty treatments.

We experienced this "assembly line" approach with Tyler. Burkitt's, like most childhood cancers, is too rare to have it's own protocol. Different doctors gave us survival rates ranging from 5% to 60%, all dependent upon how Tyler was classified. Very early on we got into a fight about the use the drug Rituxin. Some doctors said it was an "unacceptable risk", while others said it was a "critical necessity" – all dependent upon how they grouped Burkitt's. Decisions were then made on these generalized protocols--assuming Tyler perfectly matched the "statistical average". Little consideration was given to Tyler or his individual case.

Tyler was put on a protocol designed for all large B cell non-Hodgkin's Lymphomas. I asked what percentage of the kids in the protocol matched Tyler's specific characteristics. No one knew. This is amazing, but true. They also told me the information was unavailable. Well, being in sales, I know how to get through closed doors. I contacted several pharmaceutical CEO's, hospital directors, and research facilities around the world. I finally found the head researcher of Tyler's protocol in his summer home in Germany (it's not a stretch to make my name "Alfriend" sound like "Old friend" when getting information from secretaries). The answer: 0.8% of the cases in the protocol matched Tyler on the key characteristics. So how did the 0.8% specifically respond to the treatment. That data was never collected. The sampling was too small, rendering it statistically irrelevant. Well, maybe irrelevant for statisticians, but not for fathers trying to save their son.

I do understand that rising medical costs are a major problem, and that streamlining medical care can be done effectively in some areas. But not in childhood cancers. It is killing our children. The “one size fits all” does not work. Unfortunately, that is the strategy of every politician, every government program, and the majority of hospitals in the United States. Dr. Stephen H. Schneider of Stanford University is a cancer survivor and author of "The Patient From Hell". He refers to this "triage like" instant categorization. He wrote that a significant part of his battle with cancer was fighting his own colleagues for individualized care verses being treated as "statistical average".

This is the fight that we are up against. Many times I felt like screaming as doctors answered all my questions with responses starting with "Protocol" rather than "Tyler". The simple fact is that our kids need individualized treatment, and childhood cancer needs specific research.

We did finally find doctors that would focus on individual treatment. There are many of them, and they are worth their weight in gold. But the pressure of cost management government controls is making these doctors fewer and farther between.

On Tuesday we will have a new president, congress, and senate. Many promises have been made. But I fear that after all is said and done, everything will get said and nothing will get done.

Several months ago A.J.'s dad said something that really stuck with me. He said we lost 3,ooo innocent people in the 9/11 attacks. At no time did anyone expect the families of those victims to be the driving force behind efforts to prevent that tragedy from happening again. But every single year 3,ooo of our children are lost to cancer, thousands more suffer life long side effects from chemo. And it is primarily families of those children who are fighting for awareness and funding to stop this tragedy from repeating itself year after year.

I wish this was not true, but I tend to deal in reality rather than wishes. So we will continue to fight for awareness. And we will fight for funding. And we will not stop until a cure is found.

If you want to help, check out PAC2 (People Against Childhood Cancer). They are working to organize those fighting for a cure.

As far as the candidates, one guys plan is much more comprehensive in funding, but pressures hospital into more cost-cutting protocols. The other guy's plan gives the flexibility to find the best doctors and treatment, but falls short on funding. In the mean time our children die.

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