Advocacy Update, November 2019

Believe it or not, the impeachment debate isn’t the only thing happening in Washington, DC!
Here’s a quick rundown.

Congressional Hydrocephalus Caucus

Our Caucus Briefing last month was very successful. We educated over 60 staff members from Congressional offices about hydrocephalus and its impact on the individuals living with the condition – from health to school to military service to work. We shared stories representing our entire patient population, from children through seniors. Now it’s time to turn our attention to finding Representatives to join the Congressional Pediatric and Adult Hydrocephalus Caucus! This group, which is comprised of members of the House of Representatives, is essential to raising awareness of hydrocephalus on Capitol Hill. We need their support to be heard—and agreed with—in upcoming healthcare and other pertinent debates.

Be sure to call and/or email your House representative and ask him or her to join ASAP. You can find your Representative here. Email if you receive an affirmative response so that we can follow up with the office staff.

Government Shutdown?

Government funding will expire on November 21st unless Congressional leaders can agree on an extension, which most observers believe will happen (although that’s never a guarantee). We’re following this because the Patient-Centered Outcomes Research Institute (PCORI), which funds hydrocephalus research, and the Congressionally Directed Medical Research Program (CDMRP), which funds Department of Defense research into brain injuries, might get caught up in the debate.

More Concerns about PCORI…

PCORI also faces a long-term threat. Without Congressional action, the law allowing PCORI to exist will expire. A new authorization that includes more stable funding and better patient representation is making its way through the process.

…and CDMRP

Likewise, the law governing CDMRP’s grant decisions for next year also faces delays. There’s no reason to believe CDMRP would go away, but we’re still monitoring—just to be sure!

Drug Costs and Surprise Medical Billing

Congress continues to consider bills to lower drug prices and stop surprise billing. Although time and attention are limited, legislators would still like to address these issues soon.

Join our Hydrocephalus Action Network to receive our Advocacy Newsletter in your inbox as well as other action alerts with instructions on how you can take immediate action on issues we are following as they happen!