Fighting for Hydrocephalus Funding in Congress. October Update

October has been an unusually busy time for Congress, and the Hydrocephalus Association has been hard at work ensuring that we have a seat at the table. We have an exciting new bill introduced and an update on congressional funding for hydrocephalus research.

Congress shows hydrocephalus-research a little love!

In late October, Senate Appropriations Committee Chairman Patrick Leahy released a first draft version of the Fiscal Year 2022 Defense Appropriations Act. In this draft proposal, we got the first glimpse of what we can expect for congressionally-directed military research, which is where we see opportunities for brain research. We are excited to announce that hydrocephalus is on the list of eligible conditions for the Peer Reviewed Medical Research Program (PRMRP). We will continue to work with our champions in the Senate to identify opportunities to highlight the need for hydrocephalus research. Hopefully, an agreement will be reached by December 3rd, the date when appropriations bills must be passed for next fiscal year.

And the love doesn’t stop there!

The Hydrocephalus Association joined a wide variety of patient-oriented groups in supporting the bipartisan Bringing Regulatory Advances Into Neuroscience (BRAIN) Act. This bill, introduced on October 1st by Representative Earl Blumenauer, along with Representatives Bill Pascrell and Don Bacon, would establish a Neuroscience Center of Excellence (NCOE) at the Food and Drug Administration (FDA). The NCOE would spur much-needed innovation to speed access to safe and effective treatments for patients with brain and central nervous system conditions, including hydrocephalus. This important bill focuses on patient-centered decision making, with the goal of bringing the right treatments and cures to patients who desperately need them. We will need your help to build support through this bill by asking your members of Congress to cosponsor the bill.

Speaking of building support…

Although September is over, it’s s not too late to ask your congressional office to cosponsor the National Hydrocephalus Awareness Month resolution, introduced by U.S. Representative Lloyd Doggett (D-TX) and U.S. Representative Chris Smith (R-NJ). This congressional resolution highlights and elevates our efforts by allowing members of Congress to show support for the hydrocephalus community. Click here to view the text of the resolution and find out if your member has cosponsored.

New Congressional Hydrocephalus Caucus Members!

A big shout out to Representative Mike Levin (D-CA) and Representative Cindy Axne (D-IA), our newest members of the Congressional Hydrocephalus Caucus! This caucus is an important way for members of Congress to show their support of our issues and to elevate the discussion about our key legislative priorities. Here is the latest list of congressional offices that are on the Caucus. If you don’t see your member of Congress, now would be a great time to ask them to join!

What about the infrastructure stuff we’ve been hearing about?

As you’ve no doubt heard on the news, Congress is in the midst of considering two infrastructure-related bills, one related to physical infrastructure (think roads, bridges, and mass transit), and the other related to much more controversial social infrastructure (think health care and leave policies). Your team at HA is monitoring both bills closely and will keep our community up-to-speed on provisions that might impact hydrocephalus patients and their families. The fates of the two bills are intertwined, so stay tuned for more as the House and Senate begin finalizing legislation and moving toward a vote.

So Where Do Our Advocacy Efforts Come In?

Good question. Easy answer. Hop on over to the Hydrocephalus Association’s Action Center. We really need your help in getting support for the BRAIN Act, so please take action and share it with your networks! There you can learn more about the issues we’re working on and send e-mails to your legislators about our concerns and what they can do to help. We have to be active in our efforts and ensure our voice is heard.