‘We don’t do those anymore…’ Now what?
This is a brief description of an occasional yet pervasive challenge which DIPG Advocacy Group has met in its visits to Congressional Offices in Washington DC regarding the legitimacy of House Resolutions designating an awareness day, as the newly introduced H. Res. 114, the DIPG Awareness Resolution to the 116th Congress. It appears on the back of the Resolution text which accompanies a letter asking for support which will be circulating in all House Offices in February through May of 2019.
Since the first iteration of the DIPG Awareness Resolution (114th Congress H. Res. 586), we have occasionally experienced the disheartening “push-back” from certain legislative offices regarding an assumed abolishment of awareness days, which is not an altogether correct assumption. Apparently the designation of awareness days had become rather frivolous and was rightly limited by the 114th Congress, yet was not abolished entirely as many assume without further inquiry.
Though somewhat surprised at having come so far with this work as to help write legislative text in support of our cause with Congressman Knight’s office in September of 2015, and with conferring experts approval on data and statistics, only to have our project be declared null and void by the occasional critical legislative assistant, this was certainly depressing but not effective in deterring our mission. Finally after some digging during the 2nd iteration of the Resolution (115th Congress H. Res. 69), I found this account of the Republican Convention on House Rules, the actual Rule in question, and also the Protocol of that Rule which unequivocally qualifies our Resolution for suspension of rules, and for a vote to be scheduled under that process.
As an advocate, it’s been a daunting task to go about educating legislative staff, or at least making a sound and persuasive argument as to why this Resolution ought to have serious consideration, even though it’s verified by the rules themselves. We have to fight for the idea that the urgent needs of children and the dying ought to have greater consideration, which many of us feel is self-evident, but then, as outsiders to Congress, we have to fight to prove that our Resolution is viable. We strongly believe that indeed it is more than viable, as We The People are asking for Congress help in raising critical awareness to a much larger problem, and if ever there were a need for an awareness day, DIPG is a worthy candidate.
Rather than making it more important than other diseases, DIPG exemplifies in a powerful way this marginalization and chronic lack of support for research funding for the deadliest pediatric cancers, certain, tried and true killers of our children with certain annual regularity. Since the 2015 #Morethan4 movement of parent emails to NCI demanding answers to the small percentage of the annual research budget allocated to pediatric cancer as a whole, we parents have been told to shut up basically, that no one wants to work with “angry parents.” We demand greater transparency and a national conversation, not just promises of more money to temporarily placate us. Clearly our human values of prioritizing the dying and children, as they are in the Emergency Room, are not represented in the medical research industry. For those of us who have had to watch-on helplessly as our children die because ”they aren’t worth the investment”, we’ll fight with our own lives to see our values one day represented in the system.