To Chairman Pallone, Ranking Member Walden, Chairwoman Eshoo, and Ranking Member Dr. Burgess:
DIPG Advocacy Group and the undersigned are asking for your attention to the leading cause of cancer-related death in children, pediatric brain cancer, and H. Res. 114, the DIPG Awareness Resolution. We are asking for its process through Committee for the possibility of a House vote this Congress. After 4 years have passed, three introductions, and approximately 1600 more deaths from DIPG alone in the United States, little has changed for these children.
Please consider these lesser-known facts about childhood cancer: brain tumors are the #1 cause of childhood cancer deaths in our country today. DIPG, diffuse intrinsic pontine glioma, is the 2nd most common pediatric brain tumor and is the leading cause of death in children afflicted with brain cancer, representing a significant portion of the annual childhood cancer death toll. There has been no change in its standard treatment protocol, nor its prognosis, since Neil Armstrong’s daughter Karen died of it in 1962. Children with cancer are systematically overlooked by a medical research investment culture concerned more with prompt and sizeable returns than the urgent needs of these children.
Due to progress in developing effective treatments for many types of leukemia, DIPG is not the success story people want to hear amid a barrage of commercials asserting that 80% of children survive cancer. Until there is more awareness of this this reality among our representatives in Congress and the greater public, solutions for children with brain cancer will remain elusive; modest allocations for childhood cancer legislation will continue to be a fight for our advocates where there should be no question. Sadly, parents will continue to hear that there are no solutions for their children as they helplessly witness their decline and death, because “the numbers aren’t great enough for investors” in the wealthiest country in the world. By giving attention and due process to this Resolution, you have the power to affect change, and help bring needed attention and resources to our scientists who need more support for this crucial, and valuable, research, funded almost entirely by parents who have already paid the ultimate price.
As Covid-19 exposes weaknesses in our system of health care, so pediatric brain cancer exposes the failure of our medical research investment system to address the urgent, unmet needs of our most vulnerable population–our children. In the past four years bringing this message to Washington, there has never been a convenient time to consider the needs of children with DIPG brain cancer, and the terrible reality of their situation. Please be aware: while retaining full cognitive awareness, DIPG children lose control of their bodies–with some in great pain and neurological duress–as with tumor progression, respiration finally ceases. They are aware of their impending doom as their parents struggle to reckon with it, failing to provide solutions or to feel adequate in guiding them to their end, though they try with all their might. This cruel experience has continued unchecked for decades, in obscurity and darkness; from diagnosis these children and their families have no hope. “Go make memories,” parents routinely hear.
With recognition there is hope; you may not have heard of DIPG because these children, mostly between the ages of 5 and 9 years old, are fighting for their lives and most all of them die; their parents are typically too devastated to conceive of hopeful advocacy. It would be tragic still if this movement for awareness for childhood brain cancer, during Brain Tumor Awareness Month, were to become another casualty of the pandemic when all we are asking for our children is a day of recognition, a motion which would support, not detract from other measures important to national interest today.
Recognition from our Federal Government matters; H. Res. 114 would create awareness for doctors to know there are clinical trials worth trying as we seek to move hopeful treatments forward. These children might be given treatment access priority during a pandemic when a few weeks delay can mean missing a life-saving opportunity. Awareness gives parents crucial knowledge at diagnosis concerning experimental research when a matter of days can mean life or death. Indeed, clinicians would be alerted to the common signs of brain cancer, increasing the chances of early detection, life-extension, and survival.
At the recent #Moonshot4Kids Congressional Briefing in Rayburn on 2/13/2020, originally intended as a hearing to share this information with the Health Subcommittee, Dr. Adam Resnick (CHOP), leading scientist for CBTTC spoke authoritatively to the fact that exposing DIPG and the value of pediatric brain cancer research opens new opportunities for systemic change in the way we share data, conduct research and fund new clinical trials for treatments.
Thank you for your consideration for our children with brain cancer during Brain Tumor Awareness Month. You possess the power to bring hope to pediatric brain cancer with allowing process for this measure. In a bipartisan way, twenty-five percent (and growing) of the House of Representatives have signed on to H. Res. 114. Please allow our “Moonshot4Kids” a chance to bring hope and much needed attention to a dire situation now, this Congress. Thank you for your consideration and leadership.
Janet Demeter, Santa Clarita, CA
Elizabeth Psar, Knoxville TN
Paul Miller, Littleton CO,
DIPG Advocacy Group Founders