THE WALL

“JACK GOES TO WASHINGTON D.C.”

–Sept. 25, 2014, Janet Demeter, written for the local Women’s Club in Agua Dulce, CA, summarizing the trip to Washington, D.C. for DIPG and Childhood Cancer Awareness. 

September is Childhood Cancer Awareness month, as President Obama first declared it for our affected children in 2010. Still, in comparison to breast cancer or prostate cancer, there is little collective support for this cause. The trip to Washington this September was educational and inspirational. I learned a great deal about exactly where ‘the wall’ is that one hits up against when struggling to raise awareness for the urgent need for more research for our children, and the challenges that surround it. The trip was largely inspired by events throughout this year, including beginning DIPG awareness runs in major cities—with the goal of visiting several of them within the next 2 years. The Santa Colorita 5k fun-run, last February, initiated for me this idea of running for awareness. I used to be a big runner, but since I started having children almost 9 years ago, I had slacked-off dramatically, though still clinging to the idea that I had this ‘base’ of distance-running fitness (–wrong!). I recalled the uncomfortable feeling I used to have when training, and that I would think, “where am I really going”, and “wow this takes a lot of time—pretty selfish pursuit”, so that when I began again, it made so much sense to run for this cause and made all that training in the past seem worthwhile.

I ran in Boston in June for DIPG awareness, because I had gone for my 25^th college reunion, thanks to my mother’s encouragement and support. I walked in LA (calf recovering from injury), and planned to go to Washington for Childhood Cancer Awareness month. Of course I’d plan a run! I also made appointments ahead of time to see our senators and congressional representatives, and also the Co-Chairs of the Congressional Caucus for Childhood Cancer—Congressmen McCaul(TX) and VanHollen(MD)—which I didn’t know about until Senator Feinstein pointed it out to me in a personal response letter. She also made me aware of the Caroline Price Walker Conquer Childhood Cancer Re-authorization Act, still awaiting support from the Senate Committee on Health, Education, Labor and Pensions. Senators Feinstein and Reed introduced it last September 2013. This contained an important piece of history and helped me connect the dots with many of the unpleasant numbers hovering around the federal government concerning cancer research dollars. The original Act had been signed into law by President Bush in 2008, but had been stripped of its power and effectiveness by the leadership at the National Cancer Institute(NCI), a subdivision of the National Institutes of Health(NIH). The new bill has in its provisions, a mandate that the Government Accountability Office(GAO) conduct an investigation concerning the barriers to developing new drugs for pediatric cancer research. Only two drugs have been developed for childhood cancers in the last 30-plus years. It would also establish a Comprehensive Children’s Cancer Biorepositories program to improve the study of childhood cancer.

So, what does all this mean, and how does it relate to Jack’s Angels, you may be wondering. First, DIPG, or diffuse intrinsic pontine glioma, is a very good example of a childhood cancer, as with most all of them, that is marginalized as “rare” and therefore undeserving of research funding. The NCI took the 30M allotted to the biorepositories program and sent it to “Appropriations” stating that childhood cancer is rare, and doesn’t need the money. Cancer is the leading disease-cause of death in our children in the United States today. Brain tumors are the leading cause of cancer-related death in children. DIPG is responsible for 80% of pediatric brain tumor deaths annually; it has no survivors, and has had no progress to that effect in roughly 40 years. It is hardly irrelevant. Every doctor that I have ever spoken with, read, or heard speak, who has had clinical experience with this tumor, flatly declares it to be the most aggressive and malignant tumor. Families have been made to feel freakish, as if struck by lightning; some are told there is no cause—that it just happens, and others that it’s too rare a brain tumor to be researched in more depth, and that there are no common denominators. In any case, little is being done to find those common denominators within hospital walls. Scientifically, the above statements about DIPG make no sense; the tumor occurs with fairly regular frequency, indicating some process of nature of work that we simply don’t understand. The tumor represents 12% incidence of pediatric brain tumors—which number roughly 170 in identified varieties—clearly it is one of the most common pediatric brain tumors. It is brain tumors, or whatever childhood cancer, that is declared rare. It’s this wholesale categorizing that takes place to divert funding from saving our children, and ultimately advancing our scientific understanding of biology and cancer and what causes it in these children.

Sadly, using DIPG as an example, the family begins grieving at diagnosis. One is given some hope in radiation treatment to delay death and relieve symptoms for an unknown period of time—until ‘it’ happens. Slowly—or quickly—while the child retains cognitive awareness, he or she is robbed of fine motor skills, then gross, slowly losing physical capabilities until finally respiration and heart are affected, and they die. The darkness of this experience cannot be overstated. I do what I do to raise awareness in the hope that this will change for those families to come, and those affected now.

Only 4% of the NCI’s budget is allotted to pediatric cancer research. The argument, if you can imagine there being one against our children, is that only 1% of patients are children. Yet scientific research is needed where our science is not working. We have found solutions and or improvements for so many adult cancers; pediatrics is an area where a very important part of our population is systematically being ignored. Children are not taxpayers; we are. Those that die of DIPG have no voice; hence, I don the angel wings with ribbons for children who have passed on, and support those awaiting the same unfortunate end. With my halo and sign, I sat in the Summit for the Congressional Caucus for Childhood Cancer. I listened to the Director of the NIH, and the Director of the Anderson Medical Center in Texas. I enjoyed listening to these gentlemen; the former, especially, cared very much for the children and his work with them. I could tell he was pained at the restrictions he endured. The Chief Medical Officer of Johnson and Johnson, and Jansenn, a global pharmaceutical company, was the only one making the 1% ‘argument’. There it is, I thought. There is the wall. Profits from pharmaceutical investment are coming before our children’s lives in the decision-making. Capitalism is taking the place of, rather than facilitating, democracy, in this particular area of our federal government’s reach.

At the Curefest Vigil for our kids at the White House (which happened on 9/20 while our Parade was happening), Jonathan Agin of the Cure Starts Now, noted attorney and outspoken writer in Washington DC, called for us parents to be more than advocates, but to be activists for our kids. Truly, this is the only way anything ever seems to change in our country, and thank God We the People have our First Amendment Right. I knew I was in the right place. I felt my inspiration to go on this trip was strongly confirmed, and has taken my own commitment to this cause, for me personally, to a new beginning. Many parents thanked me for my stunt with the angel wings and glaring signs displaying the unpalatable facts some of our children face. The silence is unacceptable. I can’t help it!

All the while I thought of Jack, of our community, of home in Agua Dulce and the Santa Clarita Valley. I thought of all the support we’d received in our struggle to continue life after Jack’s death and I was filled with gratitude, and pride also, because this is an amazing herd. I’m lucky to come from Agua Dulce. And I’m so glad we didn’t have to move this summer…