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From the CEO’s Desk: An Agenda for Childhood Cancer Awareness Month 2018

Just over a week ago, the nation was deeply saddened by the news that United States Senator, statesman, war hero, and former presidential nominee, John McCain, had passed away following 13 months of treatment for glioblastoma.

There was an outpouring of grief as well as reflection and remembrance of his remarkable life. Though his policies did not always align with those we advocate for in the brain tumor community, because we know how indiscriminate this disease is in its ruthlessness, we supported the late senator and his family, mourned along with them, and honored his career and life dedicated to public service.

As we, along with the rest of the nation, collect ourselves and looks ahead to live in the example Senator McCain set of selfless dedication to causes bigger than yourself, we should turn attention to Childhood Cancer Awareness Month in the United States. Every September, the cancer community aims to raise awareness and inspire action to address childhood cancer, including pediatric brain tumors, as a major public health problem deserving of a higher national priority.  

In the brain tumor community, Childhood Cancer Awareness Month has a particular significance and importance. Indeed, pediatric brain tumors are the second-most common cancer in children (ages 0-14); most prevalent across the entire pediatric spectrum (0-19); and have unfortunately surpassed leukemia as the deadliest of all childhood and adolescent cancers, now accounting for three out of every 10 cancer deaths in our nation’s youth.

Many stories were published or broadcast in the wake of Senator McCain’s passing that rightly, and importantly, called out how difficult glioblastoma is to treat and how poor the prognosis is for its patients. The stats used to buttress these facts are largely reflective of the realities of adult patients, who make up a vast, vast majority of all glioblastoma incidences.

Yet, children and adolescents CAN and DO get glioblastoma and similar tumors, like DIPG, that make up the category of pediatric brain tumors known as “high-grade gliomas.” And the facts and figures for glioblastoma and other high-grade gliomas are — in many cases — even more harrowing for pediatric patients and their families.

High-grade gliomas make-up an estimated 11% of all pediatric brain tumors. And while the survival rate for all malignant pediatric brain tumors is approximately 74%, the average for pediatric high-grade gliomas is only estimated to be 15-30%. The five-year survival rate drops even further – into the single digits – for certain pediatric high-grade gliomas, like DIPG. Even more unacceptable is the fact that for these tumors there really is no true standard of care, as there has never been a single drug approved that was designed to specifically treat pediatric high-grade gliomas.

That said, all pediatric brain tumors — including medulloblastoma, juvenile pilocytic astrocytomas, AT/RT, ependymoma, and others — are serious and potentially life-threatening and life-altering diseases for which more attention should be given and more must be done. Current treatment for many of these tumor types often simply relies on radiation – which can have potentially devastating late-effect on a child’s developing, and vulnerable, brain.

As such, our agenda for Childhood Cancer Awareness Month is clear:

  • First, we call upon the nation’s biopharmaceutical and radiation oncology industries to make a much larger commitment (and investment) in the development of treatments for pediatric brain tumors, including ones that extend and save lives, as well as treatments that have less long-term negative effects.
  • Second, we urge Congress, the National Cancer Institute, and the FDA to build off the successful passage of the Race for Children Act and Childhood Cancer STAR Act to make every effort to see that these policies are implemented and optimized with appropriate funding.
  • Third, we must continue to advance research to identify treatments that work. The Defeat Pediatric Brain Tumor Research Collaborative supported by the National Brain Tumor Society, Rally Foundation, St. Baldrick’s Foundation, Students Supporting Brain Tumor Research, and other generous supporters, is working to determine vulnerabilities in the most aggressive tumors, and identify treatments that can exploit them. More collaboration and more financial resources are needed to make these efforts successful and we encourage others to join.   

So, as we continue to keep the late Senator McCain and his family in our thoughts, we must push forward to develop new and better treatment for both adults and children with brain tumors. Childhood Cancer Awareness Month should serve as a clarion call to the nation to reconcile the gap between our national values to protect and help children, with today’s lack of effective and non-debilitating treatments for pediatric brain tumor patients.  

I hope you will join us as we celebrate the strength, inspiration, and spirit of kids with brain tumors and their families. Let’s take this opportunity, at such an important time, to do what we can to make history and find a cure for these children.

Watch your email inbox and follow along on our website (braintumor.org), Facebook, and Twitter as we share stories and opportunities to make difference for all those impacted by pediatric brain tumors.

Thank you for your continued support, commitment, and passion.

David F. Arons

CEO, National Brain Tumor Society

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