We are fortunate to have Jackie Speier (D-CA-14) and David Joyce (R-OH-14) introducing the DIPG Awareness Resolution to the 116th Congress! Previously known as H. Res. 586 in the 114th congress, and then just last session as H. Res. 69, the
DIPG Awareness Resolution directly confronts the failure of our medical research system to adequately fund research into conditions and cures for pediatric cancers, and it asks that pediatric and high-risk varieties receive elevated consideration in the research grant process–both with our government and private sector funding sources.
While the #morethan4 movement in early 2015 was motivated by the deep disappointment and anger in the childhood cancer community about the fact that consistently over time the NCI designates less than 4% of its research budget to projects specified for pediatric cancer, it resulted in the PC-ing up of the larger advocacy groups sidling up to big pharma and government agencies in protecting the current corporate domination of health care. “No one wants to talk to angry parents..” and, “pharmaceutical companies won’t deal with angry parents–and after all, they’re our best friends. They’re eventually going to cure cancer…” is commonly heard as individual advocates attempt to speak painful truth to power, seeking assistance.
The DIPG Awareness Resolution is an attempt to create the kind of national attention and awareness that this problem so urgently needs. If the general public were more aware of the tragedy that DIPG so horrifically exemplifies, that we must be resigned to watch our children die in complete helplessness because the size of their annual patient population doesn’t warrant the investment, in the often-boasted wealthiest and most technologically savvy country in the world, it wouldn’t be tolerated. The purpose of the resolution is to allow people to realize that the number one disease-related killer of our children in the United States is one of the least-funded areas of research. Standard treatment for DIPG, the deadliest pediatric brain cancer, the #1 cause of death in kids with cancer, has not changed nor its terminal prognosis since 1962 when Neil Armstrong’s daughter died of it. If you have not seen First Man, please do.
The introduction date is not yet set in the House of Representatives–we are guessing around the end of February but will update! DIPG Advocacy Group’s can be found on our transition site: EVENTS .
The Senate bill goes through a slightly different process; it will get a vote on May 17th after an introduction in early May.
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