BethAnn Telford, an endurance athlete and brain cancer survivor, advocate for brain cancer patients–especially children, made a special delivery for the DIPG Advocacy Group this past week on Capitol Hill. A letter to the leadership of the Energy and Commerce Committee in the House of Representatives, the Speaker of the House, and Committee Staff was first drafted on October 18th as a formal request for a hearing for DIPG, diffuse intrinsic pontine glioma, the DIPG Awareness Resolution (H. Res. 114) and the consequences of a DIPG diagnosis through the testimony of Jace Ward, a 20 year-old law student, from Wamego KS recently diagnosed with the disease which usually affects very young children. H. Res. 114, which exposes facts about DIPG, pediatric brain cancer, and the failure of our medical research system to adequately fund research into cures for pediatric cancer in general, was introduced to the House of Representatives on Feb. 8 of this year by Jackie Speier (D-CA-14) and David Joyce (R-OH-14) amid 17 initial cosponsors, and currently has the signatures of 66 members of Congress as of October 22. The Resolution also designates May 17 as National DIPG Awareness Day.
The courier for the request letters could have not been a more perfect match for the project. BethAnn Telford is especially concerned with pediatric brain cancer support due to the inequities in research funding for the #1 killer of children in the United States with cancer. She speaks out with her activism and creates hope with her amazing feats of athletic prowess, including the World Marathon Challenge in January 2017 for ABC2, Accelerate Brain Cancer Cures, all while living with a brain tumor and the many related challenges it brings. “I try to be an example to others to show that anything is possible, and to never, never, never give up no matter your difficulties. The fact that I inspire others is something that I truly enjoy, especially for the many young children who are battling cancer that I advocate for. It’s the smiles on their faces, which motivates me to keep going.”
Pediatric brain cancer is the leading cause of disease-related childhood mortality in the United States, and DIPG is responsible for the majority of those deaths every year. The second most common brain tumor in children, there has been no change in the standard treatment protocol of radiation and palliative care for DIPG since Neil Armstrong’s daughter died of it in 1962. The DIPG Awareness Resolution has for its purpose to shine a light on a very dark place in our society where death by childhood cancer has somehow become acceptable due to the small patient population sizes, relatively speaking, typically associated with any pediatric cancer sub-type. Corporate interests and immediate returns on investments dominate the decision-making in the medical research industry; in any given year over the past decade, the US government has purposed less than 4% of the cancer research budget to pediatrics, a wholly inadequate amount to produce significant results in creating solutions for children suffering from brain cancer.
Ms. Telford delivered on Friday, Nov. 1, 2019 the Hearing Request Letter with accompanying documents to Frank Pallone (NJ-9), Chairman, Committee on Energy and Commerce; Greg Walden (OR-2), Ranking Member of the Committee; Anna Eshoo (CA-18), Chairman, Health Subcommittee, and Dr. Michael Burgess, Ranking Member of the Health Subcommittee on Energy and Commerce. Also the Speaker of the House of Representatives, Nancy Pelosi (CA-12) was included in the deliveries, as well as the Energy and Commerce Committee Staff. The request for the hearing precedes the DIPG Advocacy Groups final push for a House Vote on H. Res. 114 before May 17, 2020, with the Fall support letter for H. Res. 114 to be sent out to the entire House of Representatives before the Winter Break.
Email and snail-mail copies are being sent to all other Energy and Commerce Committee Members. “After 4 years of traveling to Washington to deliver information to the Offices of Congress on Capitol Hill, I do know that DIPG Advocacy Group will never attain the numbers of boots on the ground that other advocacy groups and cancer lobbies enjoy. With wings in the air, we represent the bereaved, children who will never have the chance to speak, and those fighting to stay alive right now. A hearing would get the information to the Membership directly, which is the best we can do in our democracy today. Pray for us,” states Janet Demeter, organizer of DIPG Advocacy Group, about this next phase of strategy to get “the little bill that could,” more attention, and hopefully a House vote before the end of the 116th Congress. The first version of the bill was introduced to the second session of the 114th Congress in 2016.
Accompanying the hearing request is a joint statement of experts attesting to the value of DIPG research with respect it’s important contribution to oncology and neurology, penned by Dr. Adam Green of the University of Colorado Denver, and expert in pediatric neuro-oncology at Children’s Hospital CO. Other supporting experts lending their signatures were: Dr. Charles Keller, Scientific Director, Children’s Cancer Therapy Development Institute (Beaverton, OR), Dr. Sabine Mueller, Director of DIPG Centre of Expertise, University Children’s Hospital Zurich, Switzerland, Dr. Michelle Monje, Associate Professor of Neurology, and by courtesy, of Pediatrics, Pathology, Neurosurgery and Psychiatry, Stanford University (Palo Alto, CA), Dr. Miriam Fouladi , Chair COG, CNS Committee and Director, Brain Tumor Center Chair, Cancer and Blood Diseases Institute, Children’s Hospital Cincinnati, and Dr. Marc Souweidane, Director of Pediatric Neurosurgery, Weill-Cornell Medical College and Memorial Sloan-Kettering Cancer Center (New York, NY).
DIPG Advocacy Group is an association of pediatric cancer foundations and individual childhood cancer advocates organized in support of H. Res. 114, also named #Moonshot4Kids, first convening in Washington DC in December 2017. Notably Janet Demeter, founder of Jack’s Angels Foundation in Agua Dulce, CA, Elizabeth Psar with Julia Barbara Foundation in Knoxville TN, and Paul Miller, childhood cancer advocate from the greater Denver CO area, are co-founders of the group. Jack’s Angels was involved with the first DIPG Awareness Resolution introduced to the California Legislature in 2014 by CA Assemblyman Scott Wilk (currently State Senator) and CA Senator Steve Knight, who in 2015 was elected to represent California’s 25th District and introduced the first national DIPG Awareness Resolution to US Congress in January of 2016. Since then, with the help of the Michael Mosier Defeat DIPG Foundation in Bethesda MD and its affiliates across the country, its “DIPG Across the Map” program helped ensure that in 2019, 32 States have declared a gubernatorial proclamation or legislative resolution for DIPG Awareness Day May 17th, also designated in the National Resolution.
Coincidentally, Jace Ward’s diagnosis date May 17, 2019 for DIPG has brought Lisa Ward JD, his mother, Jace, and his sister Brooke to Washington DC to join with DIPG Advocacy Group on their last trip to Capitol Hill in September 2019. The group supports this family with the rare opportunity for a patient to speak in real-time to the experience, as most DIPG patients are 5-9 years of age and live an average of 9 months post-diagnosis with treatment. DIPG children experience the decline of their bodies, losing function until respiration ceases while retaining full cognitive awareness of the experience. Most never have the opportunity to speak to the experience, and seldom do families feel inclined toward hopeful advocacy. Jace’s experience addresses, in real-time, the tragic challenges so many children face with access to few treatments which are almost entirely funded by philanthropy, by parent-led foundations.
While DIPG Advocacy Group has struggled to have the reach of 435 Districts in the House of Representatives, they had luck in the Senate, as S. Res. 223 passed unanimously on May 23 of this year, led by Senators Marco Rubio (R-FL) and Jack Reed(D-RI), retroactively declaring May 17, 2019 as National DIPG Pediatric Brain Cancer Awareness Day. Due to the continuing work of the group to see such a Resolution pass before the big day, the Senators have agreed to put the Resolution through again for 2020. “At this point, all we can do is keep moving, and keep our fingers crossed!” A hearing with the House of Representatives or no hearing, the group returns the Capitol Hill the week of January 13, 2020. For more information about the day-to-day workings of the group, visit the DIPG Advocacy Group facebook page, and their website at www.dipgadvocacy.org.
