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Action Days on Capitol Hill

May 4, 2017

I have recently returned home from my 3rd year participating in Childhood Cancer Action Days.  This advocacy trip has become an annual trip for me and one that provides clarity and great motivation to continue raising money and awareness for childhood cancer through Wade’s Army. Action Days provide childhood cancer advocates including individuals, foundations, oncologists, social workers, nurse practitioners, and survivors the opportunity to unite and, with one voice, apply pressure to our Members of Congress to protect the rights of cancer patients and refuse the notion that the problem of childhood cancer has been solved.

Cancer remains the number one cause of disease-related death for children in the United States and many childhood cancers still carry a dismal prognosis upon diagnosis and with relapse little chance of survival.

In the past 30 years only three new drugs have been FDA-approved for childhood cancer, while during the same time frame over 60 new drugs have been approved for adult cancers. Currently there are almost 900 drugs in the adult cancer pipeline and only a handful of those are in development for children. This innovation gap is due to the incentives companies have to focus on adult treatments and, as a result, the difficulties researchers have accessing promising new drugs for children.

Two-Thirds of childhood cancer survivors suffer from late effects of their disease or treatment, including secondary cancers, developmental disabilities, and organ damage. Survivors and their families continually struggle to find a facility that provides comprehensive survivorship care and we need to improve collaboration among providers so doctors are better able to care for their patients as they age.

Ever since Wade’s death, I have been trying to turn our experience into something productive. I’ve come to the conclusion that change requires collaboration between our leaders in government, government agencies, industry, pediatric oncologists, lab scientists, advocates, and private foundations that fund science. Action Days are about working together to create the environment that encourages all these entities to work collaboratively to make change.

We have gained some traction on Capitol Hill and are in a good position to generate change. As a part of the greater good, Wade’s Army will continue to focus on raising money and awareness for research but also continue to participate in the broader childhood cancer discussion so we can make the most of all of our efforts. In case you were wondering, here is a brief overview of our request to Congress and why:

  1. Childhood Cancer STAR Act (Survivorship, Treatment, Access and Research) is the most comprehensive childhood cancer bill ever taken up by Congress. It would expand opportunities for childhood cancer research, improve efforts to identify and track childhood cancer incidences and enhance the quality of life for all childhood cancer survivors. It also ensures pediatric expertise at the National Institutes of Health (NIH) by requiring at least 1 pediatric oncologist on the National Cancer Advisory Board. 
  2. RACE for Children Act (Research to Accelerate Cures and Equity for Children Act) provides that the FDA would have the authority to require any new cancer drug to be studied in pediatric cancers for which the molecular target of the cancer drug is relevant. Now, cancer drugs are developed by molecular target (e.g., a PD1 drug, a EGRF drug, An ALK inhibitor drug), instead of by organ (e.g. lung cancer, breast cancer). While children’s cancers don’t start in the same organs as adult cancers , they do share the same molecular targets  (e.g. an ALK inhibitor that treats adults with lung cancer also treats kids with neuroblastoma). 
  3. Support an increase of $2 billion for the NIH (National Institutes of Health) including a proportional increase for the and NCI (National Cancer Institute) to ensure that promising childhood cancer research can be conducted.  Additionally, provide $300 million for the Cancer Moonshot Initiative at the NCI as authorized in the 21st Century Cures.

I sincerely thank you all for being a part of Wade’s Army and affording us the opportunity to continue Wade’s battle by financially serving other families and contributing to the most promising research of today.

With a Warm and Grateful Heart,

Heather DeBruin
Wade’s Mom