Tues. April 26th
Upon the invitation of the Minority Leader of the U.S. House of Representatives, I travelled to Washington, DC today to meet with one of her top policy advisors to discuss the unacceptable funding situation within the world of childhood cancers. Joining us was a representative of U.S. Rep. John Carney’s (DE) office as well. I was very pleased and appreciative of the genuine concern that was shown for our children battling these terrible diseases. While I certainly don’t know what will develop from this discussion, I think this was a small, yet very positive, step down the road to the world that we want to get to – a world where better treatment protocols exist for kids and ultimately, of course, cures for childhood cancers. I’m not naive enough to think that one meeting will work some kind of magic, but every little bit helps. I sincerely appreciate the support of Minority Leader Pelosi and Congressman Carney. And, as I’ve said many times before, I don’t care if there’s an “R”, a “D”, or an “I” after their names, you’re either on our team to fight for the kids or your not. I would very much welcome the opportunity to address this issue with Speaker Boehner and his team as well.
I thought I’d share with you a very interesting chart developed by Bob Piniewski of PAC2 (curechildhoodcancer.ning.com/) that I used in my meeting today. Rather than looking at incidence rates, the analysis looks at the impact of childhood cancer relative to other ‘leading’ cancers in a “life years lost” approach. When you look at childhood cancers in a life years lost, you start to truly see the devastation of these diseases. And, when you overlay NCI funding/life years lost, you see the sorry state of funding for the kids. Thank you, Bob Piniewski, for carrying the torch so well for the kids.
Finally, I also shared with them in DC today the statistics of the impact of treatment protocols on childhood cancer ‘survivors’. Don’t get me wrong…I’d give ANYTHING to have Andrew back…with or without side effects. But, did you know that according to two doctors from St. Jude and Memorial Sloan-Kettering, 73% of childhood cancer survivors will experience chronic side effects from the treatment and 42% will suffer life-threatening side effects. So, while some doctors/researchers/bureaucrats like to trumpet the increased survival rate in some types of childhood cancers, the fact remains that 1 in 4 children will not survive and, for those that do, serious side effects are common. Why? There are many reasons, but one is that there has been only ONE new childhood cancer drug developed and approved by the FDA in the last 20 years! Simply giving kids hand-me-down adult chemo drugs is ludicrous. I concede that I’m being a bit simplistic, but this is basically the situation.
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Please keep young Brett Land in your prayers. Brett is a local boy battling ALL (leukemia) and I had the privilege of visiting the Land family over at A.I. duPont Hospital. Needless to say, this is a very scary time for the Lands and I know they would greatly appreciate your prayers and support. Please also feel free to visit Brett’s CB site and leave words of encouragement from the B+ Nation. Thanks so much! You can’t imagine how much it means to know that “people out there” are thinking of and praying for you.
http://www.caringbridge.org/visit/brettland
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Finally, congratulations to the “Kisses for Kyle” (www.kissesforkyle.org/) organization as the ‘celebrate’ 10 years of honoring the memory of Kyle Snyder and a decade of helping families battling childhood cancer. It’s certainly a bittersweet observance, but one that deserves to be acknowledged. Thank you, Snyder family and friends.
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The week is almost half over…are you proud of the impact that you have made on someone’s life this week?
Live Like Andrew – carpe diem.
B+
“Ali’s & Andrew’s Dad”