The DIPG Awareness Resolution
Did you know that brain cancer is the leading cause of death in children with cancer? It’s also one of the least-funded areas of cancer research. DIPG, diffuse intrinsic pontine glioma, is perhaps the deadliest of them all. The experience of DIPG is a terrible wake-up call: with no viable solutions, the discovery that profits and numbers count more than the value of your child’s life, DIPG exemplifies in a profound way the experience that so many children with cancer and their families endure–to watch their children die in utter helplessness.
And so, why DIPG; why is it important?
DIPG, diffuse intrinsic pontine glioma, exemplifies in a powerful way the marginalization of and chronic lack of adequate research funding for pediatric cancers, on the part of the government and the private sector. Neither terminal prognosis nor standard treatment for DIPG have changed since 1962 when Neil Armstrong’s daughter died of it. It’s the 2nd most common pediatric brain cancer, which leads in childhood cancer incidence and cause of death by childhood disease.
Despite the recent passage of the STAR Act (10 years after the signing of its failed precursor), the RACE Act, 21st Century Cures Act, and the Creating Hope Act, still, less than 4% of the National Cancer Institute budget for research has been designated for all childhood cancers combined in any given year over the last decade. The truth is, the experiential status quo has not changed for us; there are few solutions for children with cancer. The battle for awareness continues, and bereaved parents must shoulder the burden of funding the research.
So it’s not a law, it’s an Awareness Resolution.
What does it do?
- Raises awareness to DIPG, pediatric brain cancer, and the inadequacy of our medical research system in funding PEDIATRIC CANCER IN GENERAL.
- Asks that pediatric and high mortality-rate cancers be given greater consideration in the research grant process with public and private funding sources.
Whereas Federal funding for research for pediatric cancer should be increased to address the level of unmet medical need for this vulnerable population…” #Moonshot4Kids
Support the DIPG Awareness Resolution in Congress, H. Res. 114
“Expressing support for the designation of the 17th day in May as ‘‘DIPG Awareness Day’’ to raise awareness and encourage research into cures for…pediatric cancers in general.”
“…encourages all people of the United States to become more informed about…the current challenges to the medical research system in designating sufficient research funding for pediatric cancers…”
“…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…”
The Truth Is, without examples like DIPG for the public to consider, the status quo is likely to continue. So, let’s get a #HouseVote for H. Res. 114!
All pediatric cancers are marginalized as rare and receive inadequate research funding into cures. The DIPG Awareness Resolution calls for greater consideration for pediatric and high-mortality rate cancers for research funding, especially with our government resources. It also designates May 17 as National DIPG Awareness Day in the USA, as May is Brain Tumor Awareness Month.
Rep. Brian Fitzpatrick on the importance of funding for pediatrics: