How do you get help of your Representatives in Congress? This is what this journey has been all about. Well, you can call their office, write letters, etc… But who do they really listen to? H. Res. 114 began as an experiment to see if our lives really mattered when we voiced our most urgent concerns to Members of Congress. To most appearances, lobbies for big corporations seem to have more influence over our lawmakers than their constituents. I personally wanted to see if there were another avenue by which we could bring issues of urgency to our lawmakers which remained in obscurity, like DIPG, diffuse intrinsic pontine glioma, the 2nd most common pediatric brain cancer; and this is why. I was more pissed off at “the way things are” than I ever had been before.
In October of 2011 I heard that there were no solutions for my son Jack because his life didn’t matter to research investors, in the richest country in the world boasting the greatest technologies. To be honest, this angered me more than I can describe to you. I wanted to fight this thing; I didn’t want anyone to have to hear that, and have no choice but to accept it. This was an unacceptable reality to me. Especially when I discovered that brain cancer is the #1 killer of children with cancer, and that DIPG in particular was responsible for most of those pediatric brain cancer deaths every year. We hadn’t been struck by lightning, after all. And! There had been no change in it’s standard treatment of radiation and palliative care, or rather, “you can take him home and make him comfortable”, nor its terminal prognosis, since Neil Armstrong’s daughter died of DIPG in 1962.
A little history
In 2014 my CA-State Assemblyman Scott Wilk, who I had had the good fortune of meeting at a Santa Clarita Valley Chamber of Commerce event that January, introduced and passed with the help of CA-State Senator Steve Knight the first DIPG Awareness Resolution in California.
Steve Knight went on in 2015 to become Congressman for the 25th District in California, and in September of that year, I worked with his office in the drafting of the first national DIPG Awareness Resolution, introduced first to Congress in 2016, with Debbie Dingell of Michigan’s 12th District, in honor of Chad Carr and the ChadTough foundation in Ann Arbor. In the Dear Colleague letter for its introduction in January 2016, it was called, “Chad and Jack’s DIPG Awareness Resolution”. This was the answer to a prayer and the unfoldment of a dream to get a National Day for DIPG! Designated H. Res. 586, the Resolution included DIPG and pediatric brain cancer statistics, and pointed to the lack of adequate funding for pediatric cancer in general, born of the #morethan4 movement, an email-campaign of childhood cancer parents protesting the meager 3.8% of NCI’s budget which was directly purposed for pediatric research. The Resolution also designated the final week of May, Brain Tumor Awareness Month, as national DIPG Awareness Week, as did the first California Resolution. Dr. Michelle Monje was our conferring expert.
Because the Resolution was introduced in the 2nd Session of the 114th Congress, we would have to re-introduce it in January of 2017 with the designation H. Res. 69. In this version, the Resolution noted the fact that less than 4% of the NCI budget for research was directly purposed for childhood cancer as a whole. We also collaborated with the Michael Mosier Defeat DIPG Foundation, just founded in 2015, following the death of little Michael who passed away on May 17 of that year after having inspired the biggest fundraising campaign for Washington DC’s Race for Hope on the first weekend of May. We were honored to have the National DIPG Awareness Resolution H. Res. 69 designate May 17 as DIPG Awareness Day. Jenny Mosier, Michael’s mom and CEO of the Michael Mosier Defeat DIPG Foundation, began in 2016 the DIPG-Across-the-Map project, an attempt to attain as many state proclamations possible for a May 17 DIPG Awareness Day. In 2019, together we achieved 32 State legislative resolutions or gubernatorial proclamations.
Some House Offices were very difficult to contact, and then when you did make contact with the Health Policy Assistant, or Health L.A., they would not necessarily forward the information about the issue and the Resolution to the Member of Congress. Many, however, were supportive; to be fair and honest, yes, it was more of one political party, but there was resistance from both to, God forbid, acknowledging a particular disease. Honestly, I don’t think any major breakthrough into cures has been made in medicine without doing that. If there has, I’d like to know about it! No one was trying to dictate policy; we were asking for help in raising awareness to an issue of torturous suffering that was shrouded in obscurity and wouldn’t budge. For the Childhood Cancer Awareness movement, of which I was a strong part in 2014-2016 and beyond, DIPG seemed to exemplify all of it’s worst problems, so it just made sense to raise awareness with this awful disease, to help everyone.
So these were the objections, to each of which we have a strong rebuttal–oh, and I’ll add that this would happen even when I brought constituent requests to support the Resolution in honor of their child, or as a concerned citizen:
- Our policy is not to support anything disease-specific.
- Awareness Days? We don’t do those anymore.
- I only heard this once: “We don’t tell the doctors or agencies [NCI] what to do.”
And the Rebuttals are:
- A, the Resolution does not ask for money(as that’s usually the objection), B, it raises awareness to the larger problem of inadequate funding for pediatric cancer, an undisputed fact.
- Protocol 7 of Rule 28 of the 114th Rules Conference clearly permits consideration for the suspension of rules voting process for matters of urgency and bereavement such as this.
- Actually, that is part of the job description of our Representatives, to help constituents with government agencies, although the Resolution doesn’t dictate medical policy at all. It just suggests that we do more for children with cancer.
After a couple years going alone, I co-founded in September of 2017 the DIPG Advocacy Group with Paul Miller (founder of the DIPG Awareness for Family and Friends-Facebook) and Elizabeth Psar of the Julia Barbara Foundation, a member of the DIPG Collaborative. She lost her daughter Julia to DIPG on May 17, 2016, and discovered the Resolution after working on DIPG Awareness Day in her state with the Michael Mosier Defeat DIPG Foundation, which began a movement to get as many states as possible on board to have a DIPG Awareness Day, May 17.
We worked to find a new leading sponsor for the Resolution, as it didn’t get a vote before the end of the 115th Congress, and Steve Knight was not returning to Congress in 2018. Jackie Speier (D-CA-14) and David Joyce (R-OH-14) became our new champions for “the little bill that could,” or #Moonshot4Kids, introducing the Resolution as H. Res. 114 on Feb. 8, 2019 with a total of 17 cosponsors.
Today as I write, we are up to 68, minus two members of Congress who have stepped down…but we are hopeful for a potential House vote on suspension of rules, or by Hearing with the Health Subcommittee, or by actually gaining another 150 cosponsors.
This post is not yet finished…