The Hydrocephalus Scoop on Capitol Hill March 2021
The cherry blossoms are blooming in Washington, DC, which is a sure sign that the new Congressional session is well underway. Let’s get you up to speed on what’s been happening on hydrocephalus policy issues so far.
First, you might remember a little thing called the Congressional Pediatric and Adult Hydrocephalus Caucus, co-chaired by Representative Lloyd Doggett and Chris Smith. This bipartisan caucus is made up of members of Congress and has played a big role in helping your HA team educate legislators about hydrocephalus. In the good news department, Reps. Doggett and Smith have reinstituted the caucus for this Congressional session. We are well underway in our efforts to get more members of Congress to join.
Sounds great. Can I help?
Great question! Your mission, (if you choose to accept it, which you should), is to go to our Advocacy Toolkit to learn how to contact your members of Congress and ask them to get on board.
…but the fun doesn’t stop there!
As part of their work to focus Congressional attention on hydrocephalus, Doggett and Smith have also reintroduced the Hydrocephalus Awareness Month resolution, which recognizes September as Hydrocephalus Awareness Month. You can read the entire resolution here. It’s our job to get members of Congress to cosponsor the bill, and you can learn about how to write your Representative and ask them in our Advocacy Toolkit.
Oh, and while you’re at it, take a moment to thank Representatives Doggett and Smith for their support on Facebook or Twitter. You’ll find them at @RepLloydDoggett and @RepChrisSmith on both platforms.
OK, go it. Is that everything I should know?
Nope. Meanwhile, over in the research arena, events are underway to increase funding for the Congressionally Directed Medical Research Program (CDMRP) under the Department of Defense. Scientists use these grants to investigate the causes and impact of hydrocephalus, along with potential treatments. Your HA team is diligently working away on ensuring hydrocephalus continues to be a top priority in the program.
Another important federal research program is the Brain Research for Advancing Innovative Technologies Initiative, aka the “BRAIN” Initiative (see what they did there?). HA is working with the American Brain Coalition (ABC) to advocate to continue the almost $600 million Congress allocated for the program last year. Get engaged by going to the ABC site to send a letter to your legislators.
While at the ABC site, you may notice an alert about efforts to establish a Neuro Center of Excellence at the FDA, which would promote patient-centered decision-making along with finding new safe and effective treatments for conditions like hydrocephalus. HA is involved in this initiative. If you’re feeling motivated, go ahead and click on that same ABC link to send a letter to Congress asking them to support this effort.
A caucus, a resolution and research funding? That’s all, right?
Nope. After weeks of negotiations (and more than a few disagreements), the American Rescue Plan became law earlier this month. In addition to the $1,400 stimulus check you’ve been hearing so much about, this bill included a number of benefits for hydrocephalus patients and their families, including a special enrollment period to increase access to coverage, special grants for services to older Americans and those with disabilities, decreased premiums, and increased tax credits. You can read more about it here. And if you’re wondering “hey, what’s that special enrollment period all about?” be sure to check it out at Healthcare.gov before August 15th, 2021.
Phew! That was a lot to take in. So what am I supposed to do again?
- Visit our Advocacy Toolkit to contact your members of Congress to ask them to cosponsor H. Res. 20 and to join the Congressional Pediatric and Adult Hydrocephalus Caucus
- Go here to ask members of Congress to a) support funding for the BRAIN Initiative and b) support the development of an FDA Neuro Center of Excellence
- Go here to learn more about the current open enrollment period
That’s it on the big HA policy issues for now. Stay tuned for updates as Congress keeps working away. Things are always exciting on the hydrocephalus front.