Memo: Advocacy
Advocacy for Children with Cancer
and Deadly Rare Disease
#Moonshot4Kids #LetJaceSpeak #NoTimeToLose #DIPGbraincancer
The DIPG Awareness Resolution
FINALLY! In the childhood cancer community, ever striving for A NATIONAL CONVERSATION about
the chronic lack of research funding for children's cancers. Remember #MORETHAN4?
The general public is not aware, for the most part, that childhood cancer is not a priority in the medical research system. It is important that the public be given a poignant example of the experiences we are expected to accept and endure in our country today, amid commercials and promotions claiming 80% of children with cancer survive. This is an erroneous claim, despite the progress made in the past 40 years with the treatment of leukemia.
Brain cancer, the #1 killer of kids with cancer, has seen no progress of this kind.
It dawned on me, initially exploring advocacy in 2014 in Washington DC at my first Curefest, that DIPG was a prime example of the horrific experience that so many of us have because of the lack of solutions for our children with cancer. Finally, it seemed to me that DIPG could be, in effect, an ambassador for childhood cancer. Rather than to assert greater importance, DIPG exemplifies in a powerful way the utter failure of our system to address the lack of solutions for our most precious citizens--our children, and we must all be resigned to watching our kids die in utter helplessness because "the numbers aren't great enough for investors."
Currently, our society spends more money on potato chips annually than what we spend on pediatric cancer research. That we should witness the death of our children in complete helplessness is an unacceptable reality in one of the wealthiest countries in the world boasting the greatest technological prowess.
If we could put a man on the moon in 1969, surely we can do better for our children with cancer. #Moonshot4Kids
the national dipg awareness resolution
H. Res. 114
116th Congress
(scroll down for Resolution history; 116th Introduction Feb. 8, 2019)
H. Res. 114 is an attempt to raise awareness to the suffering which DIPG families and many other childhood cancer families are expected to endure: to witness, in utter helplessness, the decline and eventual death of their child, not knowing quite how, when, or why...because?
"THE NUMBERS AREN'T GREAT ENOUGH FOR INVESTORS."
The same standard treatment of radiation and palliative care/hospice is used today as in 1962 when Neil Armstrong's daughter died of DIPG, diffuse intrinsic pontine glioma, the deadliest pediatric brain cancer.
Most don't realize that brain cancer is prevalent in the childhood cancer community, that it's slightly more common than leukemia, and is the leading cause of death in children with cancer. DIPG is responsible for the majority of pediatric brain cancer deaths, and is the 2nd most common brain cancer in children.
ALL PEDIATRIC CANCERS ARE MARGINALIZED AS RARE and receive inadequate funding for research both from the private sector and our federal government. The press hasn't helped with this, historically; DIPG has repeatedly been called a very rare brain cancer, when this is misleading, as all childhood cancers are considered rare. As far as pediatric brain cancer goes, it's one of the most common ones.
H.Res.114 boldly addresses the inadequacy of our medical research system to fund the urgently needed research to provide solutions and greater options for these children facing certain or probable death.
H.Res.114 asks quite simply that, for any given type of cancer:
1. mortality rates and
2. years of life lost
be considered more significantly with both government and private sector research grants,
where numbers and profits currently dominate.
H.Res.114 also designates May 17 as DIPG Awareness Day, as May is Brain Tumor Awareness Month.
Currently, bereaved parents and parent-led foundations are making the research happen for pediatric brain cancer. Greater awareness will help a great deal in raising money for research while we work to get our government and pharmaceutical companies to contribute more.
The median survival time for a child diagnosed with DIPG with treatment is 9 months.
The children must bravely walk toward their death in full consciousness as their body shuts down.
We believe this is an unacceptable reality and encourage others to join us in voicing that the human values of children and saving lives should be represented more effectively in our medical research system.
A brief history
In 2014, then CA State Assemblyman Scott Wilk (now CA-State Senator) heard the story of DIPG from Jack's Angels Foundation, inspiring the first Awareness Resolution in the U.S. for DIPG, ACR 151, naming the 4th week of May of that year. Congressman Knight was a CA State Senator at that time. This contributed to our vision to have a National Day for DIPG Awareness.
The Resolution was first introduced by Congressman Knight as H.Res.586 to the 114th Congress 1/13/2016, and named the 4th week of May to be “DIPG Awareness Week” in the tradition of California’s first proclamation for DIPG Awareness in 2014, ACR151.
H.Res. 69 was introduced to the House Energy and Commerce Committee of the House of Representatives 115th Congress on January 30th, 2017 by Congressman Steve Knight (R-CA-25) with co-sponsor Jackie Speier (D-CA-14)
The 115th Congress version, H.Res.69, designates May 17th to support the nationwide advocacy effort of the Michael Mosier Defeat DIPG Foundation, www.defeatdipg.org, which coordinated with advocates across the country for the purpose of attaining as many State Proclamations as possible, with 21 in 2017, and 31 in 2018 and 32 in 2019.
Contact Jenny Mosier for the coordinated effort planned for 2020.
The current iteration of the DIPG Awareness Resolution, H. Res. 114, was introduced by Reps Jackie Speier (D-CA-14) and David Joyce (R-OH-14) and currently has 68 cosponsors at this editing (12/16/2019)
116TH CONGRESS
1ST SESSION H. RES. 114
“Expressing support for designation of the 17th day in May as ‘‘DIPG Awareness Day’’ to raise awareness and encourage the research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general.”
IN THE HOUSE OF REPRESENTATIVES
Ms. SPEIER (for herself, Mr. JOYCE of Ohio, Mrs. DINGELL, Mr. STIVERS, Mr. RASKIN, Mr. SCHIFF, Mr. VELA, Mr. FITZPATRICK, Mr. SMITH of New Jersey, Ms. GABBARD, Mr. COHEN, Mr. MCCAUL, Mr. LANGEVIN, Ms. BROWNLEY of California, Mr. BUTTERFIELD, Mr. KELLY of Pennsyl- vania, Mr. SOTO, and Mr. CA ́RDENAS) submitted the following resolution; which was referred to the Committee on Energy and Commerce
RESOLUTION
Expressing support for designation of the 17th day in May as ‘‘DIPG Awareness Day’’ to raise awareness and encourage the research into cures for diffuse intrinsic pontine glioma (DIPG) and pediatric cancers in general.
Whereas diffuse intrinsic pontine glioma (DIPG) affects 200 to 400 children in the United States each year with certain regularity;
Whereas brain tumors are the leading cause of cancer-related death in children;
Whereas DIPG is the second most common malignant brain tumor of childhood;
Whereas DIPG is the leading cause of childhood death due to brain tumors;
Whereas the median survival-time is only 9 months post diagnosis with treatment;
Whereas 5-year survival is less than 1 percent;
Whereas given the age at diagnosis and the average life expectancy, the number of life years lost annually because of DIPG is approximately 25,000 years of person life lost (calculated as the number of children diagnosed by average of male and female life expectancy from that median age, 300 × 80 = 25,000 years of person life lost annually);
Whereas prognosis has not improved for children with DIPG in over 40 years; and
*Whereas government funding for research for pediatric cancer is not commensurate with the level of unmet
medical need for this vulnerable population: Now, therefore, be it
Resolved, That the House of Representatives—
(1) supports the designation of ‘‘DIPG Awareness Day’’;
(2) encourages all people of the United States to become more informed about diffuse intrinsic pontine glioma (DIPG) pediatric brain cancer, and the current challenges to the medical research system in designating sufficient research funding for pediatric cancers;
(3) supports expanded research to better understand DIPG, develop effective treatments, and provide comprehensive care for children with DIPG and their families; and
(4) encourages public and private sources of research funding to elevate their consideration of the mortality rate of a type of cancer, as well as the life-years lost, as significant factors to be considered during the grant application process.
