The Hydrocephalus Scoop on Capitol Hill – Sept/Oct 2021

Fall in Washington, D.C. is usually all about the federal budget, and this year is no different. The Hydrocephalus Association is playing a critical role in protecting hydrocephalus-related research dollars during the funding battles you’ve been hearing so much about. At the same time, we worked with members Congress to recognize National Hydrocephalus Awareness Month. Yep. It’s been busy.

Congress shows some love for National Hydrocephalus Awareness Month
In between battles over keeping the government open and passing an infrastructure bill, members of Congress took some time during September to recognize National Hydrocephalus Awareness Month. To honor and raise awareness of our cause, we have worked with U.S. Representative Lloyd Doggett (D-TX) and U.S. Representative Chris Smith’s (R-NJ) offices to introduce House Resolution 20 – Expressing support for the goals and ideals of “National Hydrocephalus Awareness Month”. This congressional resolution will highlight and elevate our efforts by allowing members of Congress to cosponsor and show support for the hydrocephalus community.

Click here to view the text of the resolution and find out if your member has cosponsored.

You’ll also want to take a look at the statement Representative Doggett posted in the Congressional Record!

We are also excited to have new members join the Congressional Pediatric and Adult Hydrocephalus Caucus. Representative Mike Levin (D-CA) and Representative Cindy Axne (D-IA) are the newest members to join. Thank you to the advocates who asked these members to join! 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 and if you don’t see your member of Congress, now would be a great time to ask them to join! (Visit our Advocacy Action Center where you can send an invitation right to your Representative.)

The love keeps rolling in…

On October 1st, Representative Earl Blumenauer, along with Representatives Bill Pascrell and Don Bacon, introduced the bipartisan Bringing Regulatory Advances Into Neuroscience (BRAIN) Act, to 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. Stay tuned for an action alert soon!

That’s not all Congress is working on, right?

No, not by a long shot. In the coming months, Congress must navigate some very difficult financial waters to keep the government funded and ensure that hydrocephalus-related programs like the Congressionally-Directed Medical Research Program (CDMRP) continue to operate. As a reminder, this program at the Department of Defense provides grants for research into a variety of different conditions. Because hydrocephalus funding must be affirmed every year, we are continuing to work closely with our champions in Congress to ensure those research dollars continue to flow. Congress passed and the President signed a Continuing Resolution to fund the U.S. government until December 3rd. This takes off some pressure and avoids a government shutdown for a few months. Your HA team will monitor this debate and keep our community updated!

So Where Does Our Advocacy Efforts Come In?

Good question. Easy answer. Hop on over to the Hydrocephalus Association’s action center here. 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 can’t get what we want if we don’t ask. Now that so much is happening in Congress, we have to be sure we have a seat at the table.