The Hydrocephalus Scoop on Capital Hill for August 2023

Let us introduce…

Please help us welcome Davis Kaderli to our Advocacy Team. Davis recently joined HA as the Advocacy Engagement Manager. He will manage our advocacy work and focus on strengthening HA’s relationship with federal lawmakers. Some of his work will include overseeing policy research, tracking relevant legislation, and working to strengthen House membership in the Congressional Pediatric and Adult Hydrocephalus Caucus. He will also focus on building our Hydrocephalus Action Network – our advocacy program dedicated to empowering members of our community to advocate for all those living with hydrocephalus. If you’re reading this newsletter, that’s you! He is looking forward to strengthening our community voice on legislation ranging from funding for hydrocephalus research, the development of pathways for new medical devices and drugs to come to market faster, and supporting legislation in the areas of education, employment, healthcare, and disability so that we can all live our best lives.

Davis is a recent graduate from George Mason University. During his time at GMU, he was able to complete multiple stints interning on Capitol Hill in the House of Representatives and Senate and work as an organizational advocate for Tourette Association of America. He also spent his time competing as a Division 1 athlete on the George Mason men’s volleyball team. His background in congressional politics and disability advocacy has given him a unique point of view from both sides of the policy debate which will help him push HA’s advocacy mission to new heights.

You can meet Davis at our next Advocacy Update on Wednesday, September 6th, at 7:00 pm.

We’re Back in Business

We are getting the band back together, and by that, we mean reconstituting the Congressional Pediatric and Adult Hydrocephalus Caucus. Every year the Caucus needs to be reconstituted (a fancy way for saying the paperwork needs to be filed). We are currently working with the co-chairs to reauthorize the caucus. Once this is done, HA can begin recruiting new members and start holding caucus briefings. These briefings are extremely important in educating the members and their staff about hydrocephalus. They are also effective in spreading awareness about different pieces of legislation that affect our community.

In addition to our work on the caucus, HA will also be meeting with members of the Senate Appropriations Committee to recruit new Senate champions to support hydrocephalus’ continued inclusion in the Peer Reviewed Medical Research Program (PRMRP). The PRMRP is part of the Congressionally Directed Medical Research Program (CDMRP) out of the Department of Defense, which seeks to fund research proposals on various diseases related to military health, including hydrocephalus. HA was able to secure $15 million in funding through last year’s PRMRP award cycle and we are looking to continue our success this go around. Our estimates show that 180,000 veterans have Normal Pressure Hydrocephalus and more are at risk of developing it as they get older.

Congress is Back in Town! 

After a long summer recess, Congress will be back in session. The Senate returns on September 5, while the House returns on September 12. This return means that lawmakers of both chambers will be back on Capitol Hill to vote on bills, attend committee meetings, and meet with constituents in their DC offices. With the expiration of several health programs going into effect on September 30, there is limited time for the two chambers to hash out their disagreements on various bills. Some of the key health legislation up for reauthorization is the Labor-HHS-Education spending bill, the Emergency Response and Pandemic Preparedness law, and several funding bills for health programs, including community health centers.

Telehealth Legislation Updates 

The Hydrocephalus Association recently signed up to endorse the bipartisan CONNECT for Health Act 2023 (S.2016), which was reintroduced earlier this year. The bill would permanently establish a majority of the Medicare flexibilities implemented during the COVID-19 Public Health Emergency. Increases in telehealth access is extremely important to the Hydrocephalus Community given their diverse geographical makeup and the flexibility that telehealth provides.

The Threat of a Looming Government Shutdown 

On top of the important health bills congress is looking to pass before the end of the fiscal year, there is also the risk of a possible government shutdown. This means that both chambers will need to agree on a stopgap funding bill before September 30. If a shutdown occurs, “non-essential” government employees are then put on unpaid furlough until an agreement is met. The possibility of a shutdown is extremely damaging to federal programs and funded research. If congress fails to pass a continuing resolution, the NIH would not be able to accept new patients or process new grant applications. For those interested in learning more, the Committee for a Responsible Federal Budget created an overview of what a shutdown will entail.

Lastly…Sign up for the Hydrocephalus Action Network! 

We are going to need grassroots advocates to push forward our message throughout the country. If you are interested in becoming a member of the Hydrocephalus Action Network (HAN), we would love to have you. HAN members receive this monthly newsletter, live bi-monthly Advocacy Updates from our HA advocacy team, information and invitations about upcoming events, advocacy training, and requests to engage your Congressional members. Use this link to sign up as a grassroots advocate.

OTHER OPPORTUNITIES TO ENGAGE

We are members of some wonderful advocacy coalitions that allow us to amplify our voice in a larger patient community. Here are some other opportunities for you to engage:

September 1-30 Hydrocephalus Awareness Month 

September 1st marks the first day of Hydrocephalus Awareness Month – our month to raise awareness about hydrocephalus. We will have many opportunities for you to engage with your elected officials during Hydrocephalus Awareness Month (HAM). Stay tuned and get updates on our webpage HERE.

September 6 Hydrocephalus Advocacy Update 

Don’t forget to join us for our next Advocacy Update. Come meet Davis, learn about what the Hydrocephalus Association is working on, and get answers to your questions about policy, happenings on Capitol Hill, and ways to engage with your elected officials. Click here to register.

September 14 Rare Disease Congressional Caucus Briefing 

The Every Life Foundation for Rare Diseases is holding their annual Rare Disease Congressional Caucus Briefing. The caucus is bipartisan and bicameral (House and Senate members) and seeks to bring awareness to policy issues affecting the rare disease community. The event is centered around economic costs, personal impact, and policy solutions. To register online for the event, click HERE.

September – November WALK to End Hydrocephalus Events 

The WALK to End Hydrocephalus season has begun! We have over 40 WALK celebrations around the country. This is a great way to meet other individuals and families living with hydrocephalus. To find the WALK near you, visit our WALK page.

Good luck to all of our young advocates as they start the new school year! 

We’re here to keep you updated on the issues facing our community.  JOIN OUR ADVOCACY EFFORTS HERE! 

Your opinion is important to us! Click here to read where HA stands on the issues. Email us with any comments or suggestions at advocacy@hydroassoc.org.