A Journey in Awareness
Everything changed after October 28, 2011 when my son Jack was diagnosed with diffuse intrinsic pontine glioma, or “DIPG”, a pediatric brainstem tumor with no survivors. Though I lost my precious 3 year old boy to this practically unknown monster, I knew at the time that somehow, somewhere therein was a purpose, an important meaning for me in this state of existence—and I was determined to find it.
The initial experience of diagnosis was one of shock and disbelief, mainly because there was nothing happening around us to indicate that anyone was searching for the cause of this disease. It was simply unknown, and when medical professionals were asked to explain the ‘why’ of this, we were told the numbers of patients was inadequate for research investment incentive, that DIPG was as rare as being struck by lightning. (I have come to learn from the FDA that any disease with less than 200,000 is considered a rare disease.)[1] It simply felt as if my son didn’t matter enough, that patients judged in the paradigm of this limited outlook are wrongfully overlooked as being insignificant.
I didn’t learn until after Jack’s death that DIPG is certainly not a rare brain tumor, but a common pediatric brain tumor representing some 12% incidence[2] of nearly 170 varieties[3], and also that it’s responsible for most of the pediatric brain tumor deaths every year[4]. Also the fact that brain tumors are the leading cause of cancer-related death in children[5], and one of the least-funded areas of research was a glaring red flag; as such these children’s lives are somehow too insignificant for research dollars. To whom, I wondered? Somewhere in the chain of command in our system, something was obviously amiss. What’s all the political hype about creating jobs and American industry, especially where our children—our most precious commodity—were concerned, and why isn’t it in place here, I thought. It made me very angry, in the light of our experience at Jack’s diagnosis, and also in knowing that other families continue to have this unbelievably dark experience.
In California last May, our State Assemblyman Scott Wilk managed, with wide support, to have a Resolution passed to declare a DIPG Awareness Week, as a result of his learning of Jack’s Angels Foundation for DIPG. Deeply obliged in gratitude for this action, I became resolved to pursue this to the National level, being inspired by the research and contributions of other parents, such as Tamara Ekis of Reflections of Grace, and Annette McKeon of Aimee’s Army, and due also to the impressive results of fundraising of other parent-initiated organizations in support of DIPG research, such as The Cure Starts Now. I discovered through my journey to Washington D.C. in September 2014 that this lack of funding is common for all pediatric cancers; that all are marginalized as rare and thus undeserving of research funding. I became committed to the movement for greater awareness for childhood cancer, the murderous DIPG being a perfect example of a disease being wrongfully designated as insignificant when it is responsible for so many deaths of young children.
As a parent, I find this unconscionable in the United States of America, where we pride ourselves in our family values and progressive thinking. Only 4% of our national budget for cancer research, controlled by the NCI (part of the NIH), is allocated towards pediatric cancer research as a whole. It became obvious to me that this was part of an unfortunate trend in our system, an unfortunate disconnect in our representative democracy. Incentive for pharmaceutical investment profits governs the paradigm for judging a disease as being rare or an orphan disease. This appellation is for investment dollars, disregarding the fact that brain tumors are the leading disease-cause of death for our children in this country. Aren’t we fortunate that this paradigm of judgment was not applied to ebola?
So, obviously, in some cases the 200,000 rule[6] does not apply. I dare say there needs to be a revision of this criteria, and I’m hoping that enough parents join with me in demanding this for our children. Perhaps regularity in frequency, terminal nature, and the length of time for which there have been no improvements, and the number of cumulative deaths could be just as important, or more important, than quick profit returns on investments. Certainly our children deserve prioritization, and very good case can be made for brain tumors, with no solid improvements in some 40 years, according to the American Brain Tumor Association. This goes for adult brain tumors as well as pediatric, although in children they are the deadliest and most elusive of known treatments. Advances in our science in this area would represent a quantum leap in our understanding of biology, ecology, growth and development; most oncologists agree that the keys to understanding cancer and disease would be elucidated in our discoveries regarding the pediatric varieties. Research in pediatric cancer seems like such a win-win scenario in this light; who is afraid of losing, I wonder?
I was privileged to attend the 5th Annual Childhood Cancer Summit in Washington D.C. on September 19, 2014, hosted by the Congressional Caucus for Childhood Cancer, most notably the Caucus Chairs Congressmen McCaul (TX-10) and VanHolland (MD-3). The keynote speaker was the Director of the National Institutes of Health, Dr. Francis Collins. This doctor spoke brilliantly, had an obvious love and deep caring for the children he worked with; I was very impressed with his knowledge, professionalism, and dedication to research for pediatric cancer, and to the integrity of the National Institutes of Health. On a personal note he was my favorite speaker of the three, being the most concerned with the children, and relayed the frustration I have heard from other doctors—the lack of funding for pediatric research. I was delighted and grateful for his position in the NIH. The President of the Anderson Center in Texas Dr. Ronald DePhino spoke as well, and then finally Dr. Amrit Ray, Chief Medical Officer of Janssen Pharmaceuticals, which owns Johnson & Johnson. He actually went out of his way to make a case for the fact that only 4% of the NCI’s budget for cancer research, roughly $250M, goes to pediatric cancer as a whole, that this really does make mathematical sense. “There it is,” I thought, “I’m looking at it. There is The Wall.”[7] It was not a big surprise that it came from the CMO of one of the biggest pharmaceutical companies in the world, which makes billions in profits each year, math that needs no explanation.
In preparation for my trip to Washington, I had written all of my representatives in Congress, and contacted the offices of Congressmen McCaul and VanHolland, who were very accommodating and made appointments for me the week would be there. I wrote a letter to President Obama that I copied and sent to members of his entourage, including Counselor to the President, Chief of Staff and First Lady, with a personalized cover letter for each individual, in the hope that the President would somehow get my letter about DIPG, the experience, as an example of a pediatric cancer being labeled rare with so much devastation, etc.
Of all of the representatives I mailed, Dianne Feinstein wrote a personal letter back to me and informed me of the Caroline Price Walker Conquer Childhood Cancer Reauthorization Act that was currently pending in the Senate, and she told me of her support of it and that she would carry thoughts of Jack when she next had the opportunity to support the bill. She and Senator Reed had initiated this legislation, the original Act for which had been killed by the NCI after having been signed into law by President Bush in 2008. I learned more about this as my journey in Washington progressed. It became apparent that the money–some $30 million allocated to pediatric cancer research–had been diverted to Appropriations by Dr. Vargus, Director of the NCI, under the premise that childhood cancers were rare and did not need the money, modest as it was. The Re-Authorization Act ensures an investigation into the diversion of funds, and a review by the Government Accountability Office (GAO). It also ensures the initiation of the Bio-Repositories Program for furthering our understanding of the nature of pediatric cancers and more research possibilities for developing drugs for treatment. I would not have known anything about this had it not been for Senator Feinstein taking the time to inform me.
President Obama did indeed kindly write a response letter to my original letter to him. It did not address any specifics, but expressed his support of finding solutions to cancer, specifically pediatric cancer, and he included a copy of this year’s Declaration of Childhood Cancer Awareness Month September 2014. I was very grateful for this response. I did notice a similar commitment to generalities, however, from Dr. Vargus of the NCI, when Jonathan Agin of The Cure Starts Now had the opportunity to speak personally with him. Dr. Vargus stated that he would not address the 4% issue at this time, but only generally speak in support of raising awareness for the need for more research in childhood cancer. This just made me wonder again, “What on Earth is everyone so afraid of??”
Like many other parents who have lost a child to DIPG or another pediatric cancer, we are not afraid of confronting those places in which our system is faulty, and demanding change. We have a responsibility to our fellow citizens and our future to let our representatives in government know what our priorities are. If we feel this effort is of no avail, then our representative democracy is truly in peril. This is a perfect example of how, in effect, each person direly matters, and each individual’s power is as great as his or her faith in our Pledge of Allegiance, our Founding Fathers, and our Constitution. I can only truly speak for myself, but act upon our awareness we must, and inform others who will hear our message. I do not expect every person out there, nor every parent, to care about these children who have died, and who are currently struggling—and those yet to be diagnosed. We who have been touched by this affliction are growing in number and communication—coming out of our closets of lonely insignificance in our grief, reaching out more on social media and realizing, “my God! This isn’t rare!” Awareness is the key, knowledge is power; wisdom is in collaboration.
Jack’s Angels prayer: “May hope and light replace despair and grief at diagnosis for DIPG children and their families.”
[1] FDA.gov, http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/ucm239698.htm
[2] Pediatric Brain Tumor Foundation http://pbtf.us
[3] The Oxford Journal of Neuro-Oncology 2012
[4] 80% of pediatric brain tumor deaths in the US annually, according to the Lyla Nsouli Foundation for Children’s Brain Cancer Research http://lylansoulifoundation.org
[5] American Childhood Cancer Association, http://acco.org
[6] http://www.fda.gov/ForIndustry/DevelopingProductsforRareDiseasesConditions/ucm239698.htm
[7] See under posts in the News Section, “The Wall”: https://jacksangelsfoundation.com/?p=1882
