More H. Res. 114 Info

What is the meaning of H. Res. 114; what does it really do?

(Click here for a short press summary and history)

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.

The DIPG Awareness Resolution (H. Res. 114) is a simple House Resolution requiring only a House vote to pass; it is not a law. It is apolitical with no funds allocated. It does, however, suggest that for any given cancer type, that the years of life lost associated it as well as the mortality rate be given elevated consideration in the research grant process with public and private funding sources. It shines a national spotlight on an issue of human suffering which has remained in obscurity and imposed irrelevance for decades.

H. Res. 114 raises awareness to the lack of adequate research funding into cures for pediatric cancer, and the statistics around pediatric brain cancer, CNS tumors being responsible for more childhood deaths than any other disease in the US. H. Res. 114 suggests that the years of life lost, and mortality rates associated with a given type of cancer be prioritized in the decision-making process for research grants with our government funds and private sector funds. It doesn’t dictate process; it suggests this as an important part of the solution to the problem of inadequate funding to save our kids lives. They deserve more of a fight from us. The Resolution text cites the numbers. Be aware of its contents for maximum effectiveness in your advocacy.

Letter to Congress

Signable Letter to House Leadership

Congressional Briefing Quotables from experts in pediatric neuro-oncology, philanthropy, industry, from clinicians, parents, and DIPG patient, Jace Ward.

Support Statement from Seven Experts

Support Letter from the Alliance for Childhood Cancer

Resolution Text

YOU HAVE THE POWER!–We said at the Congressional Briefing 2-13-2020. Our children afflicted with deadly cancer in urgent need of solutions, the most vulnerable population, the most under-represented, clearly warrant this attention from the House of Representatives. With a simple signature of support, each Representative has the power to attach the word “HOPE” to pediatric brain cancer, and DIPG, the very worst of the worst. It also brings the spirit of collaboration and determination to helping these children–and to letting them know that “WE GOT THIS.” –That we’re fighting for them. If there ever were a worthy case for an awareness day, THIS IS IT.

116TH CONGRESS LEGISLATIVE PROTOCOLS

The following Legislative Protocols are proposed guidelines to help the Majority Leader’s Office schedule and consider legislation on the House floor.  While these aren’t the sole determining factors in the introduction of legislation, a good-faith adherence to the protocols will be necessary for legislation to be scheduled. 

1) Commemoratives
Purpose
This protocol is meant to provide further guidance on House Rule XII, clause 5, related to the prohibition on scheduling legislation that is commemorative in nature. [includes a “commemorative” day]

Protocol
The Majority Leader shall not schedule any bill or resolution for consideration that expresses appreciation, commends, congratulates, celebrates,  recognizes the accomplishments of, or celebrates the anniversary of, an entity, event, group, individual, institution, team or government program; or acknowledges or recognizes a period of time.

A resolution of bereavement, or condemnation, or which calls on others to take a particular action, is eligible to be scheduled for consideration.  

History

The DIPG Awareness Resolution: FINALLY–As the childhood cancer community, has been striving for A NATIONAL CONVERSATION about the chronic lack of research funding for childhood cancer, referring directly back to the #MoreThan4 movement of 2014-5.

The general public is not aware, for the most part, that childhood cancer is not a priority in the medical research system, due to the way it has been traditionally structured to accommodate corporate expedience in investment profits and catering to large numbers of patients for clinical trials of pharmaceuticals.  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 claim does not give a complete picture, despite the progress made in the past 40 years with the treatment of leukemia.  This is addressed in our Letter to Congress.

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