Hearing that your little one has cancer is devastating.
But the heartbreak doesn’t end there. For thousands, a family’s journey through childhood cancer also includes the shock in discovering that our healthcare system is failing — despite the best efforts of caring, talented, and dedicated armies of medical practitioners.
IMPORTANCE
Making millions of data points readily available will propel childhood cancer cures that have eluded discovery.
ISSUES
- The U.S. has never had a robust database for even the deadliest forms of childhood cancer. Doctors and researchers don’t have access to the information they need.
- Even if they did, the volume of data would be overwhelming unless it was organized to be usable.
SOLUTION
- Bridge To A Cure has put it’s full weight behind the Children’s Brain Tumor Network (CBTN), identified as the model for collaboration and data-driven discovery. They have the data, tools, and resources scientists around the world can freely access to drive better treatments.
02. Advance Personalized Medicine For Every Child
IMPORTANCE
Applying big data and AI ensures every child with cancer receives the right diagnosis and the most precise care.
ISSUES
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The clinical trial process is designed for adults — not children. As a result, half the medicines used to treat children have been redirected from adult data.
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There isn’t pediatric data to support safe and effective dosing for kids. These toxic treatments cause irreparable damage to growing bodies and minds.
SOLUTION
- There must be a protocol developed that considers the physiology of children and is sensitive to quality of life.
03. Require Open Science For Research Funding
IMPORTANCE
As a society, we have a moral obligation to care for the most vulnerable. The race for cures should be against the disease, not each other.
ISSUES
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Investing priorities are determined by the biggest bang for the buck, but children represent only 4% of life-years potentially saved.
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Those who receive donor- or publicly-funded grants are under no obligation to share research.
SOLUTION
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We must insist that the life-saving data be shared — openly, accessibly, without embargo. Let’s develop a national healthcare strategy that is sensitive, pragmatic, and sustainable. Let pharma focus on adults where investment returns are, and insist The National Cancer Institute deploy funds where money is not – childhood cancer research.
