Letter to President Obama, 9/10/2016

There is a specialized killer loose taking the lives of 350 children a year in our country with certain regularity; I believe we’d be using whatever resources necessary to track him down if he were a person.

Dear President Obama,                                                                                            September 6, 2016

I’ve written to you a few times over the last 3 years about diffuse intrinsic pontine glioma, or DIPG, and the lack of research funding for the deadliest pediatric cancer.  Currently, almost all DIPG research is funded by organizations initiated by bereaved parents or families, which is an enormous burden considering their challenges.  When my son was diagnosed in 2011, DIPG support organizations were not so numerous and easy to find as they are now, with the advent of social media.  DIPG groups are now more visible despite the isolating experience of the diagnosis, with new pages daily for DIPG children on Facebook as well as daily deaths.  The lack of research funding is always explained by “numbers”—which determine, in whatever relative sense, the value of their lives, such that on top of a terminal diagnosis we learn that their lives are not numerous enough to warrant the research to save them.   When I’ve questioned government officials about this over the past few years, what persists is the argument that it’s not fair, with regard to public funds, to focus on any one disease.

I am just a mom who lost her son to DIPG.  I am not a legal expert or savant, but I do have a deep respect for the Constitution of the United States.  I have also heard it said numerous times, and have read, that it is our duty as citizens to speak out when we see the basic principles of this Constitution, and our inalienable rights therein, compromised for lesser principles.  In this case, we are told there are no solutions for our children, in over 50 years of clinical observation, because their numbers don’t warrant research investment.  And so, we must accept not only a terminal prognosis, but watch in utter helplessness our children die, which they experience in full cognitive awareness until respiration fails—because to the system their lives don’t matter.  And of course, they do, and to the tune of tens of thousands now dead in our country alone.  Those are big numbers; their total sphere of influence is astronomical.

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click here for special DIPG Report by Victoria Thomas MS, RN

I cannot explain to you the internal outrage and anguish this evokes, except that my life’s energies are now committed to seeing this experience change for other human beings.  That we can quickly purpose billions to help people at the border last year, but we will do nothing to save these children—while affirming that we want to cure cancer mind you—is a most unbelievable scenario to a bereaved parent.  There is a specialized killer loose taking the lives of 350 children a year in our country with certain regularity; I believe we’d be using whatever resources necessary to track him down if he were a person.

Of what are we so afraid?  Why is there a myriad of excuses for not helping these children—now tens of thousands dead—when it comes to our government resources, our tax dollars purposed for cancer research?  Are said resources not assumed to help those most vulnerable of our citizens, our children, when all other private sector interests abandon them?  Who would object to our allocating more funds—more than 4% of our cancer research budget—to cure the deadliest of cancers?  That’s what I want to know.  I am not surprised, but I am extremely disappointed that the Moonshot Initiative does not even address the 4% issue which Americans have been complaining about for the past few years.  No one will discuss it.  And numbers are used to justify why we are ignoring these dying children and their emotionally decimated families.  We are told the Administration wants our input, yet it has consistently ignored it.

This is an example of where Life, Liberty, and the Pursuit of Happiness—for all Americans—is taking a back-seat to other interests.

DIPG is not a rare pediatric cancer; technically a rare disease, it’s the 2nd most common pediatric brain tumor, and its responsible for 80% of pediatric brain tumor deaths each year.  If brain tumors are the leading cause of death in children with cancer, why are we not prioritizing this research?  Why are we not prioritizing the deadliest cancers responsible for such excessive cumulative, and certain death, the ones that elude our current scientific understanding, the research that would logically elevate our science and bring us closer to the cure for all cancers that we assert is a US priority?  This state of affairs is entirely unacceptable to many of us, and definitely illogical if human life is the governing principle of our decision-making, which brings me to my original point.

This is an example of where Life, Liberty, and the Pursuit of Happiness—for all Americans—is taking a back-seat to other interests.  Whether these interests be hidden or overt, it cannot be allowed to continue, not without a fight.  Here I am referring to the fact that less than 4% of NCI funds benefits pediatric cancer research.  Until we are willing to name a specific disease, not just cancer—which is an enormous field—but the worst of the worst and say, “we’ve GOT this!” and then move on to the next greatest challenge, we won’t cure cancer.  Not in a timely manner.  Time is scarce for these children.  How many more have to die for them to matter, for these children and their families to be recognized, for the name of the disease to be spoken?

Please consider Congressman Steve Knight’s HRes586, the only current legislative text including the plea for higher consideration for low-survival rate cancers and years of life lost with government research grants.  For those certain to die, and for our children, we must take a stand for them to be considered a priority.  We do this without question in the emergency room; we must start to prioritize human life with our medical research system.  This is not to disregard large populations in need of solutions, the most frequently used excuse to disregard these children; the suggestion is to include low survival rates and years of life lost as important factors in the decisions made with NCI grants.  HRes586 is an Awareness Resolution using DIPG as a poignant example of the neglect of pediatric cancer research in general.  It calls for a National DIPG Awareness Week, finally acknowledging the thousands who have bravely faced certain death, and bringing hope to those currently afflicted.

I am attaching a report about DIPG which includes both the medical and personal perspective, written by Victoria Thomas MS, RN.  We are submitting to various media outlets including CNN and the New York Times for Childhood Cancer Awareness Month 2016.  If you would help recognize DIPG and the important issues it represents for all childhood cancer, I and countless others will remain obliged to you for the hope you will bring to so many.  I personally don’t care if it’s a day, a week, just that there is a motion to recognize these children who have, in effect, been left to die for decades.

You took office shortly after my son was born, and he would have been 8 years old by now.  Truly epic for the United States, I will always have a special regard for your Presidency, your kindness in responding to my letters with a copy of the 2014 Proclamation, and in expressing your condolences for Jack and our loss.  Thank you for the 2016 Proclamation for our children across this Great Nation, and I pray that in some way your influence will help prioritize terminal cancer in our medical research system—for our children, for all people, that the value of their lives never be questioned.

For your kind attention to this matter, I will remain always

Respectfully yours,

 

Janet Demeter

President, Jack’s Angels Foundation

32520 Wagon Wheel Rd.

Agua Dulce, CA 91390

jacksangels1@gmail.com

www.jacksangels.org

  1. 661-977-3125
  2. 818-400-2724

 

P.S.

Currently, the Michael Mosier Defeat DIPG Foundation is organizing an effort across the 50 States for us to seek Gubernatorial Proclamations for a DIPG Awareness Day, May 17.  Jack’s Angels and other organizations across the country are helping with this.  I was told by the OSTP last year that we would have to demonstrate that it’s a country-wide desire to have a Presidential Proclamation for the President to consider it.  We organized with several other advocacy groups including the Children’s Cause Cancer Advocacy to support HRes586, as well as DIPG events dotting the May landscape.  But we who have been hit hard by DIPG are not quick to organize and fight after having been completely decimated emotionally, spiritually, financially.  We are coming around, but I hope that this nationwide effort for Gubernatorial Proclamations is enough to show a national desire.

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