WHEN CHILDREN
LOSE THEIR FUTURE

We All Fail.

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.

01. Access A National Childhood Cancer Database

IMPORTANCE

Data is a crucial component to discovery. Making millions of data points readily available to cancer researchers and oncologists will propel childhood cancer cures that have eluded discovery.

ISSUES

  • Surprisingly, the U.S. doesn’t have a robust database for each childhood cancer. As a result, the great minds that children with cancer depend upon don’t have access to all data they require. As a result, these frontline providers are often constrained to their institution’s own research data, patient records, and published materials.
  • Even if all of this information was available, the volume of data would be overwhelming and unmanageable.

SOLUTION

  • The database must be complete and without bias. It should include everything known about cancer, the medical files of every child treated for every form of cancer, the science for every treatment, drug and alternative medicine, and more. To learn more, read Dying in the Dark and Stop Pediatric Cancer Like We do Terrorists.
  • We need methodologies and tools for researchers to extract meaningful findings, plus algorithms to analyze, discover, and predict from the data once available in the database. For details, see Putting the Pieces Together for the Fight Against Cancer.

02. Design A Clinical Process Specifically for Children

IMPORTANCE

We must ensure that application of newly developed treatments is effective for children, and to determine if there are any potential harmful side effects that impact them.

ISSUES

  • The clinical trial process was created for adults — not children. As a result, half of the medicines used to treat children have been extrapolated from adult data and do not have adequate randomized control trial data to support safe and effective dosing. Children are not small adults and their bodies’ physiology and chemistry react differently to cancer treatments.
  • The performance criteria is adult-centric and fails to consider the child’s horrific suffering, the emotional strain on parents and siblings, the potential for deep psychological scars, or the debilitating impact of the financial burden.

SOLUTION

03. Implement A New Approach To Childhood Cancer Research Funding

IMPORTANCE

As a society, we have a moral obligation to care for and protect the vulnerable and dependent. Children need and deserve the war on cancer to apply to cancers that affect them.

ISSUES

  • Priorities for government funding and pharmaceutical investing are determined by the biggest bang for the buck, period. Children (ages 0-19) represent only 1% of new cases each year, or 4% if based on the life-years potentially saved.

SOLUTION

  • We need a national healthcare strategy that is sensitive, pragmatic, and sustainable. In our view, failing to invest in childhood research is unacceptable. A discerning review of current spending in end-of-life care vs. childhood research deserves consideration. To learn more, read our blog Inefficiency, Inertia, and Waste Drive Us to Spend $3.65 Trillion on Healthcare Annually: It’s Time to Focus on Research.
  • We’re putting out the call to expand the criteria for valuing pharmaceutical companies to reflect their contribution to curing childhood cancer. Don’t miss The Cure to Pediatric Cancer is at Our Fingertips, which outlines this idea in detail.
  • Let the pharmaceutical companies focus on adults, where the investment returns are. The National Cancer Institute (NCI) should deploy funds to where the money is not – childhood cancer research.

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