Monday, November 16, 2009

Our Fearless Leaders in the U.S. Congress

There are three realities that dictate most childhood cancer treatments. First is the fact that cancer tends to be much more aggressive in children and teens than in adult. Second, child and teens can withstand much higher doses of chemo than adults. Third, in the past 30 years, there has been only one new drug created for childhood cancer. The result is that most treatments are mega doses of adult chemo, packaged into generic "one-size-fits-all" protocols.

The problem is that chemo does not cure...it kills. Chemotherapy is a group of highly toxic chemical drugs developed to kill fast growing cells. They cannot distinguish between diseased and healthy cells, and therefore kill ALL fast growing cells. Chemo is very tough on adults. But imagine the effects on a growing child or adolescent...where almost every cell in their body is fast growing and under full attack from chemo. This primitive "shot gun" approach to cancer is the reason multiple organ failure is a constant fear for children fighting cancer.

Several recent studies have shown that this system is causing incredible damage to these young developing bodies. A study from the University of Arizona showed that 75% of children receiving chemo have life long side effects, 2/3 of which are debilitating. 30% suffer unrelated secondary cancers before the age of 40.

There is new promising research into targeted cancer therapies, called “molecular-targeted drugs” or "smart bomb drugs". These drugs are designed to search and destroy specific cancer cells without damaging healthy cells.

Through molecular research, scientists have also discovered that cancer is very individualized. Although many cancers appear to be the same type, they are actually quite diverse on a genetic or cellular level. This breakthrough in genetic research has shown the importance of individualized cancer treatment, rather than generic protocols.

The problem is money. Funding for pediatric cancer has gone down every year since 2003. Although there are 12 major groups of childhood cancers, effecting 12,500 children every year, only 3% of the National Cancer Institute funding goes toward these cancers. And while pharmaceutical companies fund over 50 % of adult cancer research, they give virtually nothing for childhood cancer. The adult cancer drug business is simply more profitable and less risky than dealing with children.

For years the childhood cancer community petitioned congress for help, but were simply ignored.

This all changed when U.S. congresswoman Debra Pryce sponsored the Conquer Childhood Cancer Act. She wrote a bill that granted $30 million a year, for 5 years, to childhood cancer research. Like too many in this fight, she discovered the need for funding when her 9 year old daughter lost a year long battle with cancer. The bill was later renamed after her daughter, The Caroline Pryce Walker Conquer Childhood Cancer Act.

For two years the bill was ignored. But this past election year the cancer community was able to raise public awareness of the bill. Once that happened, the bill was unanimously approved by both the houses and signed by the president. In fact, virtually every senator and congressman praised themselves for "championing the cause of our children". They posted banners on their congressional websites, and bragged of creating a "new and robust funding partnership between government and the medical and research communities".

So what is the status of the bill now? Well, in the weird and strange world of government, "approved" and "funded" are two very different things. Here is the status:

Caroline Pryce Walker Conquer Childhood Cancer Act, House Bill H.R. 4927. Introduced by Representative Pryce March 9, 2006. Unanimously approved June 12, 2008. Referred to the House Committee on Energy and Commerce. No further action has occurred on this legislation.

Caroline Pryce Walker Conquer Childhood Cancer Act, Senate Bill S. 2375. Introduced by Senator Coleman March 7, 2006. Unanimously approved June 12, 2008. Referred to the Senate Committee on Health, Education, Labor and Pensions.
No further action has occurred on this legislation.

That's correct. Our same "public servants" who unanimously approved the bill during the election year, have now quietly removed it from the budget.

In a desperate attempt to get something rather than nothing, the few real supporters of the bill offered a compromise of $10 million. But the request is being blocked by the Labor, Health, and Human Services committee. By blocking it in committee, our elected officials can brag that they supported the cause while actually doing nothing.

Apparently the committee sees no obligation to follow through on even 1/3 of their promise. They make speeches and toot their horns. But when everything is said and done, we find everything gets said and nothing gets done. They just sit around with their thumbs up their orifice of choice.

But remember...at the end of the day, every elected official is working toward one goal: To be re-elected. This is still a democracy. They work for us, and we pay them. And we can fire them. If you have a problem with their conduct, don't complain...do something.

You can reach your congressman by going here. If you do not, you have no right to complain. These are elected officials, and will do whatever it takes to stay that way. Tell them how to keep their jobs. Tell them to fund the Conquer Childhood Cancer Act that they so enthusiastically approved last year. Tell them please, just this once...just as a concept...do your damn job and keep a promise.

2 comments:

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