Wednesday, March 16, 2011

The Big Beg

We have four objectives tomorrow:
Maintain and increase.

Sounds like a weight-loss or substance-abuse group meeting, but we're here in DC again begging our representatives to save our kids from the thing that kills more children than any other childhood disease COMBINED.

Unfortunately, there's this whole national debt thing getting in the way, and the NIH is on the chopping block. And when the NIH (National Institute of Health) is cut, that means the money to the NCI (National Cancer Institute) is cut, which means the already dismal share of research dollars that childhood cancer gets is further diminished.

As one man who lost his child to cancer put it today, "Balance the budget, but don't balance it on the backs of our kids."

So when we used to go begging for Congress to fund the Caroline Pryce Walker Conquer Childhood Cancer Act which authorized $30 million for research (but has never been close to fully allocated), now we have to go beg that they don't cut the NIH budget.

And when I say "beg," it is my hope I make someone cry. I am prepared to have Eve show off her scars if necessary.

Maintain and Increase: The children's cancer community urges members of Congress to maintain current funding levels for the National Cancer Institute and children's cancer research for the remainder of 2011 and increase funding in 2012.

So, funding from the NCI for childhood cancer has been insufficient for a long time. Imagine the repercussions if further cuts are made. Right now, COG hospitals receive a per-case reimbursement of $2,000 from the NCI. Clinical trials cost between $6,000-$10,000 each. Less funding? Result: hospitals won't be able to open new trials because they can't afford the costs; more kids continue to be treated with highly-toxic therapies resulting in long-term side effects; more kids continue to die because there is no treatment available for them.

Here's the deal: the private sector CAN do a lot of things better than the government. Except fund childhood cancer research. No one is doing it. Adult cancer? There's money to be made; pharmaceutical companies are all over it. 60% of research and development for adult cancer comes from drug companies; the percentage for childhood cancer can be counted on no hands. It is our country's obligation to save our children. The child you save today may very well grow up to be the doctor that saves you, the adult, tomorrow. I could go on and on about the years saved when you save a child, but you already know all this. Kids are cool. Let's let them grow up to be cool big people.

Join: Advocates, families, and patients of children's cancer encourage members to join the Congressional Pediatric Cancer Caucus and be a Congressional champion for legislation benefiting children with cancer.

It's a bipartisan group of people getting together to support our kids. People who deserve to wear t-shirts that say, "I love kids and hate cancer."

Those who don't join the Caucus get the other t-shirts.

Co-sponsor: Co-sponsor the Creating Hope Act to encourage drug development for pediatric cancers and other rare pediatric diseases. This legislation has bipartisan support and does not require an appropriation.

Okay, so this one is really cool. What is big pharma missing with regard to childhood cancer? Incentive. This one provides it at no cost to the taxpayer.

Here's the idea: encourage biotechs to come up with drugs specifically for childhood cancer. Award biotechs a "golden ticket"- a priority review voucher. (This voucher allows the FDA to review new drugs four months sooner than standard review, meaning big pharmaceutical companies can get their latest and greatest on the market faster.) Little biotech sells voucher to big pharma for a serious crap-load of money. Big pharma uses golden ticket to get their new drug expedited through FDA review. You get to see new commercials for men with erectile-dysfunction four months sooner. Everyone wins.

Only ONE new drug specifically for childhood cancer has been developed in the past twenty years. We are still treating our kids with the same toxic drugs from the 50s, 60s, and 70s. These aren't drugs for children; they are hand-me-downs from adult cancer regimens. When 3 out of 5 survivors suffer devastating long-term side effects, it's time to rethink our poisons of choice. Sure you survived, but at what price?

Co-sponsor: The children's cancer community urges members of Congress to co-sponsor and adopt the "Childhood Survivorship Research and Quality of Life Act" (formerly HR2109), which is scheduled to be re-introduced later this year.

The thing is, we have a lot more survivors now than in the past. Go back a few decades and if your child was diagnosed with cancer, it was all but a death sentence. In 1960, only 4% of children survived; today, we are at 78%.

But with survivorship comes late effects. Today I met a woman who was treated for leukemia in the early 1980s. She mentioned she took doxorubicin. (Interesting to note that the same drug was used for her blood cancer just as it was used for the solid tumor in the neuroblastoma survivor sitting next to me, just as it was used for Eve's Wilms tumor.) What kind of side effects has this 29-year survivor experienced?

No immune system to speak of. Auto-immune disease (Celiac). Hearing loss. Tinnitis. Memory loss. Heart failure.

And those are just the ones I can remember.

This Act would not only establish NIH cancer survivorship programs, but it would also fund clinics for long-term follow-up services. And judging by the side effects, I'd say this is a no-brainer.

But what do I know? I'm just a mom.


  1. Go get 'em Christy!! Don't take no for an answer. I'm glad you are using your powers for good... otherwise, we'd be screwed. ;-)

  2. Between you/Eve and Holly/Zach, DC won't know what hit them!!