The Need for Funding

Why do we need research specific to childhood cancers?

Research dedicated to childhood cancers is critical to developing more effective and less toxic treatments to not only save children’s lives, but to minimize the long-term health effects of their treatment.  Relying on adult cancer research is not sufficient.

Children with cancer have unique needs requiring specialized medical treatments, drugs, and dosages. Differences in the types, sites, causes, and biology of the tumors that occur in children and adults make it impossible to prescribe drugs to children simply based on adult data.”   

“Over the past 20 years we have evolved from a view that we must protect children from research, to a view that we must protect children through research, in order to assure their access to new and effective medications.”

Margaret A. Hamburg, M.D., Commissioner of Food and Drugs
Keynote Speech, Alexandria Summit on Oncology 2013

What drugs have been developed?

  • Since 1980 only three drugs have been initially approved by the FDA for use in children with cancer.   The first two were approved for children with acute lymphoblastic leukemia, and the third drug, Unituxin (dinutuximab), was only recently approved (March, 2015) for children with high risk neuroblastoma.
  • A few drugs have been approved by the FDA for both adults and children with acute lymphoblastic leukemia, but Unituxin is the only drug approved for a pediatric solid tumor in the past 25 years.  
  • Researchers have identified many novel drivers in pediatric cancers, but we do not have agents effective against these drivers.

Why traditional sources of cancer research funding are falling short:

  • National Cancer Institute Funding:  The National Cancer Institute only designates about 4% of its budget to all twelve major groups of childhood cancers. “Children don’t have lobbyists . . in Washington, and so unfortunately, they are not made the priority often times in Congress.” Congressman Michael McCaul, opening remarks, 2015 Childhood Cancer Summit.
  • Pharmaceutical and Biotechnology Industries:  Interest from the pharmaceutical and biotechnology industries in childhood cancers is minimal due to the small market share.  Childhood cancers as a whole are considered “rare”;  the less common childhood cancers represent an even smaller market share. “The pharmaceutical industry has approximately 900 adult cancer drugs in the development pipeline and almost none for children’s cancers.” Press release from the Congressional Childhood Cancer Caucus, September 2013.
  • Cancer Related Nonprofits:  Cancer-related nonprofits that are not specific to childhood cancer generally earmark very little for childhood cancer research — despite ads, photos and publicity that may imply otherwise.  (In other words, just pennies of every dollar you donate may go to childhood cancer research.)

How are childhood cancer organizations helping?

Through the efforts of families and friends affected by childhood cancer, many wonderful childhood cancer nonprofits have developed with a variety of missions, from funding research, to supporting families with gifts and money, to providing or finding temporary housing, to advocating for our children.  All are wonderful missions – but funding research may or may not be their most significant mission.  Be sure to investigate whether nonprofits you support are using your donation the way you intend.

Money raised by Cure Me Too will used to fund research for some of the most difficult to treat childhood cancers:  bone cancers.  Since we are an all volunteer organization, all money donated can go to research.  

 

Related Articles and Websites

Sixth Annual Childhood Cancer Summit:  Fighting Pediatric Cancer (Comments from Congressman Michael McCaul and from Dr. Lee Helman, Acting Director of NCI’s Center for Cancer Research, 2015)

Accelerating the Development of Pediatric Drugs for Rare Diseases (Keynote Speech, Alexandria Summit on Oncology 2013, Margaret A. Hamburg, M.D., Commissioner of Food and Drugs)

Progress in Developing First Pediatric Cancer Treatments in Decades Highlights 4th Annual Childhood Cancer Summit (Press Release, Congressional Childhood Cancer Summit, September 2013)

Childhood Cancer Awareness Month: 8 Brutal Truths to Choke On

Child Cancer Survival Imperiled by Lack of New Drugs

The State of Pediatric Cancer Research Funding

So Where Does the Money Go:  Childhood Cancer Research Funding

Coalition Against Childhood Cancer

The Truth 365

Advocating for Children With Sarcoma (highlights the discrepancy in funding for sarcomas in particular)

Targeting Developmental Pathways in Children with Cancer:  What Price Success?