My NBTS Letter

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May 4, 2020

My Letter to NBTS for “Head to the Hill” Virtual Event

Dear Senators Feinstein, Harris, and to all California Reps:

I am writing today as a constituent and volunteer advocate with the National Brain Tumor Society. I, like 400 other parents annually, lost my child to the 2nd most common, and the deadliest, pediatric brain cancer called DIPG, diffuse intrinsic pontine glioma.  Less than 1% of these children survive past 5 years, or “long-term”, and yet there’s been no change in standard treatment since Neil Armstrong’s daughter died of it in 1962.  They mostly all die very young, so they almost never get to speak out.  And for those who do fight longer to stay alive, and their families, the experience doesn’t lend itself to hopeful advocacy.  Being told at day 1 that there are no solutions for us because our children’s lives aren’t numerous enough to produce potential short-term profits for pharmaceutical companies, this doesn’t make us all run to be advocates, thinking that people are going to listen to us, much less-very much less, care.  Because I’m fortunate to be outraged about the status quo, I will continue screaming it from the rooftops until something changes or someone shoots me. 

The only way we will find better treatments and a cure for brain tumors is by funding medical research. Brain tumors are the leading cause of cancer-related death in children…I had no idea before my son was diagnosed with the deadliest variety, with all the commercials saying that 80% of children survive cancer.  We have invested heavily in leukemia research, particularly adult leukemia research, but not in brain tumor research.  Why?  I was told “the numbers aren’t great enough for investors” in the wealthiest country in the world.”  Who’s investing?  Is that how our government invests?  Don’t we accommodate the vulnerable in most urgent need of solutions?  My experience, and the experiences I’ve observed in other families, says a resounding “no.”  This is unacceptable to me as a parent and as an American. 

Please fund the following in the Fiscal Year 2021 appropriations package:

•Appropriate a $3 billion increase for the National Institutes of Health (NIH), and a $500 million increase for the National Cancer Institute (NCI), to keep funding levels on pace with inflation as well as in line with the professional judgment of experts at the NCI. 

• Appropriate $130 million for the Peer Reviewed Cancer Research Program of the Congressionally Directed Medical Research Programs of the Department of Defense, and include brain cancer and pediatric brain tumors as topics eligible for funding. 

• Fund the Childhood Cancer STAR Act to guarantee that the programs inaugurated by the law are implemented and begin to make a difference for all those affected by childhood cancer, including pediatric brain tumors, now the leading cause of cancer-related death in children.

Most importantly to me,  please have your aides contact Senator Rubio and Senator Reed’s offices to cosponsor the 2020 DIPG Pediatric Brain Cancer Awareness Resolution before it gets introduced May 11.  It designates May 17 as a day of recognition for our children with brain cancer.  We need a bigger show of support.  The. leading cause of cancer-related death in children needs a national spotlight for anything to change; we need this, desperately.  We need the Senate’s support for this, as our “little bill that could”, now labeled H. Res. 114, is in it’s third Congress with no movement to date in committee–although it’s got support from more than 1/4 of the House.  Please support it!  If we ever needed to target a disease, like we did leukemia, it’s pediatric brain cancer.

To our CA Representatives in the House, please know that California was the first state in 2014 to recognize DIPG and pediatric brain cancer in a bicameral resolution.  Last year we had 32 states…DIPG and pediatric brain cancer is in every district.  You have constituents in every district who have had to watch their children die in complete hopelessness because our current system of medical research doesn’t deem them worth the investment to save.  Profits are coming before the lives of our children, our citizens with this deadly disease of brain cancer.  We need more federal funding and recognition.  The burden of creating research dollars lies on the backs of those parents who have already paid the ultimate price.  Please cosponsor H. Res. 114, and put a spotlight on pediatric brain cancer, the leading cause of cancer-related death in children.  Please consider the importance of singling out and targeting a disease, to raise awareness to the urgent need for solutions and calls forth the collaboration of the powers that be, their creativity and ingenuity, to find solutions for these children, together.

Thank you for your consideration.

Janet Demeter

President, Jack’s Angels Inc; Organizer, DIPG Advocacy Group; Host, Childhood Cancer Talk Radio

Santa Clarita, CA 91390

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