The Hydrocephalus Scoop on Capitol Hill: Jan/Feb 2022 Update

Here’s what the Hydrocephalus Association has been up to on Capitol Hill!

Congress has many obstacles to overcome in the coming weeks and most key items have been resolved, but we still have lots of work to do in our advocacy efforts. Currently, hydrocephalus research funding is stuck at last year’s funding level because Congress has been unable to pass a final budget for FY22. This debate will continued in January, as current temporary funding for the government runs out on February 18th. We will continue to monitor and actively push for increases to critical research budgets.

Remember the BRAIN ACT? 

As you will recall from earlier updates, Representative Earl Blumenauer, along with Representatives Bill Pascrell and Don Bacon, recently introduced the bipartisan Bringing Regulatory Advances Into Neuroscience (BRAIN) Act (see what they did there?), to establish a Neuroscience Center of Excellence (NCOE) at the Food and Drug Administration (FDA). The NCOE would seek to speed access to safe and effective treatments for patients with brain and central nervous system conditions, including hydrocephalus.

And why are we talking about it now? 

Good news! Another much larger bill, known as CURES 2.0, includes the provisions proposed in the BRAIN Act. This bodes well for the establishment of an NCOE, because this much larger bill is higher on the Congressional Agenda. You can learn more and send a message in support of this new legislation here at our Action Center.

Take Action on BRAIN!

New Legislation Alert! Cosponsor the CONNECT for Health Act 

The Hydrocephalus Association has joined dozens of other patient groups in supporting the Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act of 2021, which has been introduced in both the U.S. Senate (S 1512) and U.S. House of Representatives and Senate (HR 2903). If passed, this bipartisan bill would expand coverage of telehealth services through Medicare, make permanent COVID-19 telehealth flexibilities, improve health outcomes, and make it easier for patients to safely connect with their doctors. Improving access to care through telehealth opportunities would offer significant benefits to the hydrocephalus community. By removing geographic restrictions on health services, more patients would be able to receive care from their home and/or qualified sites from medical professionals experienced in hydrocephalus diagnosis, treatment and care. Please take a moment to ask your elected officials to cosponsor this legislation in our Action Center.

Take Action on CONNECT!

Congressional Hydrocephalus Caucus Keeps Growing! 

The Congressional Pediatric and Adult Hydrocephalus Caucus continues to grow. Our most recent member of Congress to join is Representative Mariannette Miller-Meeks (R-IA). As the new year starts, we will be focusing our efforts on this caucus to educate members of Congress and their staff, as well to promote our policy agenda. Here is the latest list of members of Congress who are on the Caucus. If you don’t see your member of Congress, now would be a great time to ask them to join! If you do see them, thank them for joining!

Ask to Join the Caucus

Say Thanks for Joining

So Where Do Our Advocacy Efforts Come In? 

Good question. Easy answer. Hop on over to the Hydrocephalus Association’s Action Center. There you can learn more about the issues we’re working on and make your voice heard by sending e-mails to your legislators. In particular, we really need your help in getting support for the BRAIN Act, as well as to get more members of Congress to join the caucus, so please take action and share it with your networks!

Visit the Action Center