Oregon Supports RACE 4 Children Act

Oregon is a key state in getting the RACE for Children Act passed. Here are 3 ways Oregon can help get this important bill passed!

There is a law that requires companies developing drugs for adults to also develop them for children: the Pediatric Research Equity Act (PREA).   However, PREA has never applied to cancer. Because children’s cancers occur in different organs than adult cancers, PREA pediatric study obligations are waived.

  • The Research to Accelerate Cures and Equity for Children Act (RACE for Children Act) updates PREA (written in 2003) so that it matches today’s science and extends to cancer.ChangeOrgan_edited-1The RACE for Children Act authorizes the FDA to require PREA pediatric studies when a molecular target of an adult cancer drug is relevant to a children’s cancer.
  • The RACE for Children Act ends the orphan exemption that every new molecular target cancer drug has enjoyed over the past three years.
  • The RACE for Children Act does not incur costs on taxpayers!
  • The RACE for Children Act requires companies to give pediatric cancer researchers free supplies of cancer drugs, or conduct the pediatric studies themselves.

Here are the 3 ways you can help get this bill passed!


ONE: Sound off and show your support! Here is an easy way to send a letter asking for support of the Race for Children Act to your Representative and to both of your Senators at the same time with just a few clicks. If you know your zip code you are almost practically done! If you like, you can even personalize your letter with your own specific reasons why you support this bill, or why you feel your child would benefit from passage of the bill.


TWO: The Put a Face on RACE Selfie Campaign  is aimed at Oregon’s members of the US House of Representatives.  We want to bring attention to the lack of drugs available in the United States. Today only 3 drugs have specifically been made for kids’ cancers while adults have hundreds.

Here’s how the Put a Face on Race works:

From now, until April 30th residents of Oregon will Put a Face on Childhood Cancer and the RACE for Children Act. This campaign will target the all five  Oregon Members of the US House of Representatives. 

OregonRaceForm_edited-1Take a selfie photo of yourself with your child, or with a picture of your child using a “Oregon, I RACE for” sign (print  out here).  Using the sample tweets below, tweet your selfie to each of the five Members of the US House of Representatives below.

@RepGregWalden     @RepBlumenauer   @RepBonamici           @RepPeterDeFazio    @RepSchrader

Tweet This  (Copy and paste into tweet and add your selfie photo)

Please pass HR 1231 #Race4ChildrenAct Improve drug development 4 #ChildhoodCancer. This bill requires no new funding @RepGregWalden <<<

Be sure to attach your selfie photo to your tweet!  If you also have a Facebook account, post your selfie on your page and tell your friends you support RACE for Children Act. Ask them to join The Facebook Race for ChildrenAct Event page to stay active and informed. 


THREE:  Call your Representative’s Office and request that your Representative  support and vote for HR 1231 The RACE for Children Act. 

Suzanne Bonamici, District 1, Phone: (202) 225-0855

Greg Walden, District 2, Phone: (202) 225-6730                          Note:Umatillia & Kiamath County have the highest population of Childhood Cancer patients.

Earl Blumenauer, District 3, Phone: (202) 225-4811

Peter DeFazio, District 4, Phone: 202-225-6416

Kurt Schrader, District 5, Phone (202) 225-5711

When calling, use this list of very good reasons why your Representative  should support RACE. 

  1. Children with cancer do not have access to the most promising, novel cancer drugs in their trials.
  1. RACE for Children Act provides that companies developing cancer drugs should test their drugs in children with cancer.  Specifically, pursuant to the RACE Act, if a cancer drug is developed for a molecular target that is relevant in a pediatric cancer, then that drug should be studied in the pediatric cancer as well.
  1. RACE is not a new law, but an update to an existing law. The RACE Act updates the Pediatric Research Equity Act (PREA), which provides that companies developing drugs for adults also test the drugs in children.
  1. RACE does not cost the taxpayers anything.

The Problem:

Cancer drug development has recently undergone a revolution. Now, companies are developing cancer drugs by molecular target to create new, life-saving and less toxic therapies.

However, children with cancer are not getting most of these new drugs. There is no justification for this. While children’s cancers may be different than adult cancers, pediatric and adult cancers often share the same molecular targets. PREA must be updated because:

  • Terminally ill children cannot use promising investigational drugs currently available to adults with cancer.
  • One issue is that high drug prices have priced out pediatric cancer research. Academic pediatric oncology researchers are very interested in undertaking pediatric cancer studies, however, they are stymied by their inability to buy high priced drugs for studies in children. This is due in large part to inadequate economic incentives or obligations for drug companies to conduct pediatric cancer research.

There is in fact a law that requires companies developing drugs for adults to also develop them for children: the Pediatric Research Equity Act (PREA).   However, PREA has never applied to cancer. Because children’s cancers occur in different organs than adult cancers, PREA pediatric study obligations are waived.

The Research to Accelerate Cures and Equity for Children Act (RACE for Children Act) updates PREA so that it matches the science and extends to cancer.