The Honorable Speaker of the U.S. House of Representatives, Nancy Pelosi (CA-12); The Honorable Majority Leader, Steny Hoyer (MD-5); The Honorable Minority Leader, Kevin McCarthy (CA-23); The Honorable Majority Whip, James Clyburn (SC-6), and The Honorable Minority Whip, Steve Scalise (LA-1)
To our Revered House Leadership:
We pray that you and your families, circles of friends and colleagues are safe and well amid this Covid-19 pandemic, and appreciate your taking a moment to consider those afflicted with the leading cause of childhood mortality due to cancer, pediatric brain cancer, and one of the most common types, DIPG, responsible for most of the annual deaths. There has never been, in the last four years, a convenient time to consider them for most of Congress including its leadership. Our champions in the Childhood Cancer Caucus, especially Rep. Jackie Speier (CA-14) and Rep. Michael McCaul (TX-10) have been crucial to the staying power of the National DIPG Awareness Resolution. Most of the afflicted for whom the Resolution stands no longer walk the earth; the few of us able to speak out for these children, among the many devastated and broken families, are counting on you to not look the other way.
Please consider the real-time words of Lisa Ward, from Wamego KS, mother of a DIPG patient:
“Our son Jace Ward is now 21 years old. He was diagnosed with DIPG on May 17th. We had never heard of DIPG and were devastated by what we learned. This monster of a brain tumor would strip all independence and dignity from our son before claiming his life while always leaving his bright mind intact. Candidly, we are still so devastated.
How could there be a disease treated in the same way today as it was 60 years ago? Look around, what else in your world or mine is the same as 1960? In 1960 we didn’t require seatbelts let alone airbags and auto intelligence braking to save lives. In 1960 premature births could not be saved. We had black and white TV and party line telephones and only recently the advent of fast food. Our world was so different, but treating DIPG was exactly the same.
That is what happens when we are not aware that DIPG kills 15% of children by death to cancer each year. When we gloss over the fact that cancer kills more children than any other disease annually. When we accept the loss of 21,000 years of life lost to DIPG annually in the US alone.
Lives like our son Jace’s at risk with a 0% survival rate. Jace is a junior at Kansas State University. Through his year of treatment he has maintained a 4.0 gpa in business with pre law emphasis. As he enrolled this week for his senior year he said “I sure hope I live to graduate”. He doesn’t know whether to take the Law School Admissions Test because only 5% of DIPG patients live 2 years. He’s not afraid of having a high enough score, he’s afraid he won’t live to start school! Let that sink in!! Yet what do you do when there is no effective treatment and you are literally 21 and waiting for this tumor which appeared without warning to claim your sight, hearing, all motor function so you can no longer walk, or text, or eat. What do you do before it takes your voice, swallow and finally stops your heart?
For Jace, you speak up. You speak at the NIH, at gala events and at the first Congressional Briefing in Feb 2020. Yet you don’t feel heard by Congress it seems no one is listening. While the world battles Covid 19 you feel your chances for the current victims of DIPG slipping away. You know DIPG Won’t wait for more time before claiming more lives. In fact you see on Facebook a child dying every single day on average. You hate DIPG for all the devastation it will bring to your sister just 17 months older and forever tied to you, to your parents who have no idea how to save your life, for every family of DIPG where it seems a child is lost every day.
The current funding for DIPG is woefully inadequate to move research and treatment forward. Without awareness, we can’t expect enough people to know or make a difference.
House Res 114 asks for just one thing. It asks Congress to recognize creating a day of Awareness for DIPG not only honors those like Jace in the fight and those families who lost loved ones, but it puts the spotlight on the dark corner of cancer which desperately needs private and public attention. It asks that there be one day we use that focus as a platform to tell the story and when making funding considerations we acknowledge years of life lost and suffering in the consideration…”
DIPG exemplifies in a powerful way the challenges in treating pediatric cancer and the daily tragedies which ensue from the general lack of solutions our medical research industry has for deadly pediatric disease. Like Covid-19 it exposes weaknesses, failures frankly, in the way we invest in, and conduct, medical research. Because of the #Moonshot4Kids Briefing, 2/13/2020, a novel NIH SPORE grant proposal is in process which would be multi-institutional in scope for pediatric brain cancer.
H. Res. 114 is a plea to Congress for help; it creates awareness for doctors to know there are clinical trials worth trying as we seek to move hopeful treatments forward. These children might be given treatment access priority during a pandemic when a few weeks delay can mean missing a life-saving opportunity. Awareness gives parents crucial knowledge at diagnosis concerning experimental research when a matter of days can mean life or death. Indeed, clinicians would be alerted to the common signs of brain cancer, increasing the chances of early detection, life-extension, and survival. With greater awareness we could save lives now, but the urgency of this is often lost amid a barrage of commercials asserting that 80 percent of children with cancer survive.
Here there is no “tough choice”, no money, no politics. Rather than detracting from COVID-19, H. Res. 114 supports the call for systemic change to accommodate our most vulnerable citizens in most urgent need of help. The virus will come and go; DIPG will continue to kill our children with annual consistency.
Awareness Days were restricted because they were designated frivolously. If there were ever a clearly, monumentally helpful occasion to support one, wouldn’t this be it? DIPG acts as ambassador for deadly pediatric disease, to the urgent needs of the most vulnerable populations, to put our humanity first, to not be the country that looks the other way. Speaker Pelosi, I watched your press interview about the Stimulus, “for the children.” Is it really impossible, when the House makes up its own rules, to make a day of recognition for these children? The tens of thousands who have bravely faced their death in full cognitive awareness as their bodies decline, with no one to reassure them or give them an answer, knowing they’re going to die? Can we not at least give them this, and ensure that the Powers That Be know, and are made aware, of this urgent need?
We now have a quarter of the House supporting it, and the Senate in full. Please, we need the House of Representatives to represent us.
God bless you, our revered House Leadership, and may God bless America.
DIPG Advocacy Group
Janet Demeter, Organizer, Jill Morin, Secretary, Lisa Ward, Executive Parent Advocate
The end of Lisa’s letter:
Please, right now while cancer, and specifically the most aggressive brain tumor DIPG, refuses to wait, agree to cosponsor. Ask yourself what in your life is the same as in 1960? Ask yourself would you be satisfied with 1960’s treatment if your life depended on it? Then simply cosponsor 114 for DIPG Awareness.
Roger and Lisa Ward
2201 Columbian Rd
Wamego, KS 66547
Jace Ward (DIPG Warrior)
Wamego, KS (sister)
Blake and Lauren Ward
13303 W 104th
Lenexa, KS 66215
San Marcos, TX (grandmother)
Russell Springs, KY (grandmother)
Manchester, KY (close cousins)
Rhonda and Todd Tipton
Dani and Nick Watts
Camden, OH (close cousins)