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Creating Hope Reauthorization Act (S. 4010) in Jeopardy: PBTF Urgently Calls on Senate Leaders to Reauthorize Before December 11

12/07/20

Since its passage in 2012, the Creating Hope Reauthorization Act (S. 4010) has provided crucial incentives that inspire drug developers to produce treatments for rare pediatric diseases. It has resulted in 26 total drugs, including two for childhood cancer and several more kids’ cancer drugs currently in development.

Unfortunately, the Creating Hope Reauthorization Act (S. 4010) is now in jeopardy of ‘dying in the Senate’ if the Senate does not pass its reauthorization by December 11, 2020. Although the House passed a version of it on September 30, only a few of the 100 Senators have co-sponsored the Senate version so far.

Nancy Goodman, CEO of Kids v Cancer and whose policy work is the genesis of the Creating Hope Act, said in advance of the House vote earlier this year, “My son, Jacob, died of medulloblastoma, a pediatric cancer, ten years ago. I and every parent who lost a child to cancer, or who has cared for a child with cancer, asks Congress to pass the Creating Hope Reauthorization Act...Now is the time for the Creating Hope Act to be permanently reauthorized. There is clear evidence of its impact. Moreover, there are two other voucher programs that were passed or modified after the passage of the Creating Hope Act that are permanent: a program for tropical disease drugs and a program for medical countermeasure drugs. It is time for the pediatric priority review voucher program to be permanent as well.”

The Pediatric Brain Tumor Foundation joins Kids v Cancer, the Coalition Against Childhood Cancer (CAC2), National Brain Tumor Society (NBTS), and other leaders in the childhood cancer and brain tumor communities in calling on the U.S. Senate to pass the Creating Hope Reauthorization Act (S. 4010). We also urge the public to call and Tweet their Senators using the following resources.

Here is how you can help before Dec. 11:

Step 1:  Call each of the following Senate leaders.

  • Senator Chuck Schumer (202-224-6542)
  • Senator Lamar Alexander (202-224-4944)
  • Senator Patty Murray (202-224-2621)
  • Senator Bernie Sanders (202-224-5141)
  • Senator Elizabeth Warren (202-224-4543)
  • Senator Mitch McConnell (202-224-2541)

Here is the message to leave:
Please do not allow the Creating Hope Reauthorization Act (S. 4010) to die on your watch. We only have four drugs specifically approved just for childhood cancers which are not the same as adult cancers. Please help get this passed before December 11th!

Step 2: Send a Tweet to a Senate H.E.L.P. Committee Member in your state.

The Senate H.E.L.P. Committee must pass the Creating Hope Reauthorization Act (S. 4010) before the Senate can vote on it. Twitter is a very quick and effective tool to reach them!  

If a Senator in your state is listed below as a H.E.L.P Committee member, copy the following message, add the Twitter handle of the Senator from your state, and press “tweet.”

Here is the tweet to send out:
After 8 successful years, please don’t allow the Creating Hope Reauthorization Act (S. 4010) to die on YOUR watch! We only have 4 drugs specifically approved just for #ChildhoodCancer. They are not the same as adult cancers. Please pass S. 4010!  [NOTE:  Add only the Twitter handle of the Senator from your state from the list below.]

State

First Name

Last Name

Twitter Handle

Phone

AK

Lisa

Murkowski

@lisamurkowski

(202) 224-6665

AL

Doug

Jones

@SenDougJones

(202) 224-4124

CO

Michael

Bennet

@SenatorBennet

(202) 224-5852

CT

Chris

Murphy

@ChrisMurphyCT

(202) 224-4041

GA

Kelly

Loeffler

@SenatorLoeffler

(202) 224-3643

KS

Pat

Roberts

@SenPatRoberts

(202) 224-4774

KY

Rand

Paul

@RandPaul

(202) 224-4343

LA

Bill

Cassidy

@BillCassidy

(202) 224-5824

MA

Elizabeth

Warren

@SenWarren

(202) 224-4543

MN

Tina

Smith

@SenTinaSmith

(202) 224-5641

NC

Richard

Burr

@SenatorBurr

(202) 224-3154

NH

Maggie

Hassan

@SenatorHassan

(202) 224-3324

SC

Tim

Scott

@SenatorTimScott

(202) 224-6121

TN

Lamar

Alexander

@SenAlexander

(202) 224-4944

VA

Tim

Kaine

@timkaine

(202) 224-4024

VT

Bernie

Sanders

@SenSanders

(202) 224-5141

WA

Patty

Murray

@PattyMurray

(202) 224-2621

WI

Tammy

Baldwin

@SenatorBaldwin

(202) 224-5653

WY

Michael

Enzi

@SenatorEnzi

(202) 224-3424

Although last week’s news about the Childhood Cancer STAR Act and Childhood Cancer Data Initiative holds promise in funding new research and improving our understanding of childhood cancer, the Creating Hope Reauthorization Act (S. 4010) plays a crucial role in inspiring drug developers to take note of kids battling cancer.  If it is not reauthorized, the childhood cancer community will lose a significant tool in the fight to save kids’ lives.

About the Pediatric Brain Tumor Foundation
Every day, 13 children and teens are diagnosed with a brain tumor, the deadliest form of childhood cancer. Every day after, they are in a fight for their life. It is a fight the Pediatric Brain Tumor Foundation is here to help families win. A leader in the brain tumor and childhood cancer communities, PBTF’s mission of Care. Cure. Thrive. reflects its commitment to curing all pediatric brain tumors and transforming how children and their families are cared for. Since 1991, PBTF has provided strategic leadership and funding to accelerate the number of targeted therapies for children battling brain tumors today, while equipping families with the educational resources, financial relief and emotional support they need to navigate their child’s journey. A world without childhood brain tumors is possible when we stand together to effect real, meaningful change. Learn more at www.curethekids.org.