Laws, Sausages, and Biobanking

In response to our recent post on the Appropriations bill passed by Congress, a reader asks:

"Will the NCI follow the directives of Congress when it comes to childhood cancer? I’m concerned because, in the past they have actually ignored such directives and needs they have been tasked with. They often say that they have already fulfilled that goal."

Photo Credit: Genetic Engineering & Biotechnology News

This question is a good segue to discuss why we are working hard to pass the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act, HR 2067/S 1251.  While we also support efforts to increase the dollar amount allocated to federal childhood cancer research through the appropriations process, we know that it is essential to ensure that the dollars appropriated are spent in the ways researchers say they are needed most.  One of those areas is expansion of and better coordination of biobanking efforts.  This legislation removes existing barriers to improved collection of biospecimens and specifically directs NCI to spend resources to do this.  Yes, once we pass the legislation into law we will also need to pick up the fight for appropriating those dollars, but we first must get these provisions in place.

The legislative process has been compared to sausage-making because it is often an ugly, frustrating process.  Nonetheless, Children's Cause is proud to do the legwork needed to advance our shared goals in cooperation with and on behalf of the childhood cancer community -- I personally spend countless hours on a regular basis speaking to Congressional staff about the specifics of the legislation and answering the sausage-making questions.  But we need your help, too!

Nothing is as powerful as hearing from a constituent patient, survivor, family member or caregiver. You can put the personal spin on the importance of removing barriers to conducting more effective research.

Please take a moment to send a letter to your Representative and Senators urging them to cosponsor the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act.  And if they have already done so thank them -- and thank them publicly via social media or a letter to the editor in your local newspaper.  We'll hold down the fort in Washington, if you can help us by taking action at home!


42 House co-sponsors:  Reps. Bachus (AL-6), Beatty (OH-3), Bonner (AL-1), Buchanan (FL-16), Cartwright (PA-17), Castor (FL-14), Cohen (TN-9), Connolly (VA-11), DesJarlais (TN-4), Grimm (NY-11), Harper (MS-3), Himes (CT-4), Israel (NY-3), King (NY-2), Levin (MI-9), Lipinski (IL-3), Loebsack (IA-2), Carolyn Maloney (NY-12), Sean Patrick Maloney (NY-18), McCarthy (NY-4), McCaul* (TX-10), McGovern (MA-2), Miller (MI-10), Moran (VA-8), Pastor (AZ-7), Peterson (MN-7), Pingree (ME-1), Pittenger (NC-9), Pocan (WI-2), Posey (FL-8), Reichert (WA-8), Roe (TN-1), Schakowsky (IL-9), Schiff (CA-28), Shea-Porter (NH-1), Speier (CA-14), Upton (MI-6), VanHollen* (MD-8), Walberg (MI-7), Waxman (CA-33), Wolf (VA-10), Yarmuth (KY-3)

13 Senate co-sponsors: Sens. Michael Bennet (CO), Robert Casey (PA), Dianne Feinstein (CA), Deb Fischer* (NE), Al Franken (MN), Johnny Isakson (GA), Amy Klobuchar (MN), Robert Menendez (NJ), Jack Reed* (RI), Bernard Sanders (VT), Charles Schumer (NY), Elizabeth Warren (MA), Sheldon Whitehouse (RI)

*Lead Sponsors