A Unique and Powerful Challenge, and Opportunity

#PASSHRES404 #dipgwontwait “Kids don’t deserve a death sentence.”

H. Res. 404 Press Summary (general description/brief history and background)

How any US RESIDENT can help H. Res. 404

Tagline: “Kids don’t deserve a death sentence.” Use Hashtags: #PASSHRES404 #DIPGwontwait

With DIPG, we have an important opportunity to raise awareness for childhood and rare cancers and the neglect of those most needy of cures for research funding.  By providing facts about childhood brain cancer, the DIPG Awareness Resolution leads one, through logical deduction, to be aware that our medical research investment culture follows corporate values first rather than our humanitarian values of saving lives and reducing suffering, especially for our most vulnerable citizens, our children afflicted with cancer.  This is truly a voiceless population in need of urgent attention.  This is the primary purpose of the DIPG Awareness Resolution, using the horrific example of DIPG and the statistics of childhood brain cancer to illustrate this neglect in stark simplicity. Decisions are routinely made with the default assumption that pediatric investment is “unimpactful” to institutions and investors.

The DIPG Awareness Resolution (H. Res. 404) suggests that consideration of mortality rate and years of life lost should be elevated in the grant decision-making process, both with private and public funding sources.  It also suggests that federal funding for childhood cancer research should be increased to meet the unmet medical needs of children.  The Resolution would also establish a national “DIPG Awareness Day” on May 17 to raise awareness for DIPG, pediatric brain cancer, and the need for greater support for childhood cancer research, and to remember the brave children and their bereaved families who fought this monster without enough of a fight from us.

The Challenge: we need 290 signatures for a “sure thing” House Vote

How can I help?

The House Rules restricted so-called “commemorative” resolutions in the 1990’s due to excessive overuse at the time, to conserve important floor-time for matters of import to the American People.  An exception clause was introduced in 2016 for bereavement and urgently needed action, to make way for the Patriot’s Day Resolution.  In order to by-pass the restriction rule we need to either achieve a super-majority (290) cosponsors in the 117th Congress (We currently have 110, November 2021) or, make the case to House Leadership with our lead sponsors that this resolution fits the requirements for being considered exceptional, qualifying it for a “suspension-of-rules” vote.  

“A resolution of bereavement, or condemnation, or which calls on others to take a particular action, is eligible to be scheduled for consideration.”https://www.majorityleader.gov/content/117th-congress-legislative-protocols

We have the opportunity to set a precedent of caring for children afflicted with deadly disease in our society today by asking our Members of Congress to recognize them with this resolution.  We cannot attract a cure quickly enough for terrible cancers like DIPG which are a death sentence.  Drawing the attention provided by our members of the House of Representatives standing together on this issue to be a voice for our children is one thing that Congress can actually do to help, and which will have a significant positive impact for our community. 

In addition, the Michael Mosier Defeat DIPG Foundation’s “Across the Map” project is petitioning for every state to issue a proclamation also designating May 17 as DIPG Awareness Day.  This activity which also began in 2016 has been unifying for the community and has influenced the language of the national resolution to designate May 17th as DIPG Awareness Day.

Accomplishments:

The resolution was first introduced to the House of Representatives on January 13, 2016, finishing the 114th Congress without a vote; it was reintroduced in January of 2017 as H. Res. 69 and finished the 115th Congress with over 50 cosponsors, and then in the 116th Congress, H. Res. 114, the resolution gained the support of nearly half the House with 215 signatures recorded at the close of the session, and was introduced for a fourth time on May 17, 2021 with 22 original cosponsors, by Debbie Dingell (D-MI-12) and David Joyce (R-OH-14).  

Senator Marco Rubio (R-FL) and Senator Jack Reed (D-RI) first introduced the DIPG/Pediatric Brain Cancer Awareness Resolution in the U.S. Senate in 2019, and again in 2020 and 2021 with passage of unanimous consent on each occasion, this last time on May 23, 2021 as S. Res. 223: A resolution expressing support for the designation of May 17, 2021, as “DIPG/Pediatric Brain Cancer Awareness Day, to raise awareness of and encourage research on diffuse intrinsic pontine glioma tumors and pediatric cancers in general.”  The Senate recognizes a day for one year only, whereas the House Resolution would designate the day in perpetuity. 

For a more complete history of the resolution please reference the press summary document.

For more details about DIPG Advocacy Group’s strategy, reference a previous post here.

NEXT STEPS:

DIPG Advocacy Group is scheduling staff meetings with as many Congressional offices as possible of 435 to educate about childhood brain cancer and the lack of adequate support for children with cancer in general, asking each Member to “cosponsor” or sign the resolution in support of drawing attention to this unseen population.  We would like to get a majority before the summer, so that before the fall the sponsors can ask the House E&C Committee for an official referral or deferral of jurisdiction to House leadership to ultimately decide the fate of this Resolution, and an exception to the House rule restricting resolutions for commemorative days, at which time the lead sponsors may petition House Leadership for consideration for a vote on H. Res. 404 before the close of the 117th Congress. 

However, attaining a significant majority of cosponsors this session of Congress of over 218, or better yet, 290 would render a House vote imminent.  

For more information, please contact:Janet Demeter, Jack’s Angels Foundation, Jacksangels1@gmail.com, DIPGadvocacy.org