ADD ON THOUGHTS ABOUT KBH: When I have written Senator Hutchison the "canned" response I have received back indicates that she supports cancer research (but the support for legislation she lists only includes adult cancers) and that she would consider the Conquer Childhood Cancer Act if it ever comes up for a vote.
That's not good enough. Childhood cancer is not adult cancer. It has different characteristics, causes, and treatments. It needs its own funding and research. Even if everything that worked for adults also worked for children, children with cancer do not have fifteen or twenty years to wait for the promising drugs to go through three sets of adult trials, receive approval for adults, then go back into three more sets of pediatric trials, before they are finally approved for children.
Do not be put off by Senator Hutchison's nice, but ultimately hollow, words. We need a Senator willing to step up and fight for our children now.
Advocacy Update:
Folks of an age will remember Schoolhouse Rock and I'm Just a Bill. (Take a trip down memory lane by clicking on this link or this one that takes you to You Tube so you can watch the original music video:)
I'm just a bill.
Yes, I'm only a bill.
And I'm sitting here on Capitol Hill.
Well, it's a long, long journey
To the capital city.
It's a long, long wait
While I'm sitting in committee,
But I know I'll be a law some day
At least I hope and pray that I will
But today I am still just a bill.
That ditty, which tells of the long, drawn out process of how a bill becomes a law attempts to capture the circuitous, sometimes torturous route, but doesn't do the process half the justice it deserves. Case in point: since the Buengers went to Washington to lobby for the Conquer Childhood Cancer Act of 2007 back in June, it looks like not much has happened. The bill is still sitting in the same committees and subcommittees where they landed in March. . .BUT. . .
A lot has happened. Since then, as a result of massive and widespread lobbying by people like you and me, 150 Representatives and 41 Senators have signed on as co-sponsors (you may notice that 41 is awfully close to the 51-person majority the bill would need to successfully pass a floor vote).
What I understand will happen next (and I strongly believe that this will happen this month), is that Senator Ted Kennedy who chairs the committee where the bill (S.911) is sitting will ask for a Mark Up. The committee will then report the bill to the floor, and when it moves up in the schedule, the full Senate will vote on it. I also believe that once the Senate takes up the bill, the House Commerce and Energy Committee (H.R. 1553) will do so as well, following a very similar process.
If you have even a passing connection to one of the Title Categories above (Texas Ex, cheerleader, Junior Leaguer, Citizen of the Lone Start State), I need your help today. My heart is breaking because the senior Senator from the state of Texas, Senator Kay Bailey Hutchison has not signed on to the bill and will not say why, nor will she make suggestions that would make the bill more palatable to her. Given her special status in those Title Categories I thought that perhaps her peers (this is you!) might make an attempt to convince her that the time has come for her to get on board! Write her. Call her. Fax her.
| Senator Kay Bailey Hutchison (R- TX) |
DC fax: 202-224-0776
Link to E-mail: http://hutchison.senate.gov/contact.html
It has been hard for childhood cancer to get the notice it deserves. Yet the years of life lost from childhood cancers are way up there, exceeded only by the two most common adult cancers.
Neuroblastoma, like many pediatric cancers, arises sporadically. It can't be predicted or prevented. As one parent summed it up: It's simply unexplainable." The cruel hand of fate regularly reaches down and taps families on the shoulder from all walks of life: It has visited the families of bankers and builders, farmers and financial traders, doctors and deliverymen, teachers and lawyers, and so many others. There is so much left to learn and so many lives to save. Unfortunately, pharmaceutical companies don't see much chance for profit with children, and most private fund raising for cancer (think American Cancer Society, Lance Armstrong Foundation, or even the Susan Komen Breast Cancer Foundation) overlook children almost entirely.
If you want more fodder for a letter, you can write me and I'll tell you more, or you can check the September 10th entry below for some handy facts, or visit the CureSearch website. The important thing is DON"T WAIT. Let's give her a chance to sign up as a co-sponsor before the committee takes it up.
Besides the advocacy bit, the Buengers are taking life at their usual pace. Erin hit Bryan High Homecoming on Friday night with "the other" Aaron, and apparently had a blast staying up past her parent's bedtime.
Saturday brought another tight loss (1-0) on the pitch, but we are all confident that if we continue to do things right, the victories will start adding up. Saturday night the soccer team descended upon the innocent home of one of her teammates (Sydney Jeter) for a slumberless birthday party. Erin was groggy and complaining when I picked her up early for Sunday school, but we had to get their since the children's choir was singing the anthem for World Communion Sunday. Tomorrow is the fifth grade classes' all day field trip to Camp Allen (I have gotten sucked into serving as a half-day chaperone. . .I'll tell you about the mosquitofest later).
In between these activities, Erin has busily created a large pile of campaign posters and paraphernalia for her big run for Student Council. Since almost everyone in her class is running (each class selects one representative), she figures if she can get three or four votes she'll have a plurality. She has also been working on castle building!
Thanks for the push...I wrote my letter! Charon Edgington
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