The Hydrocephalus Scoop on Capital Hill for June/July 2023

The Hydrocephalus Association has been advocating with key congressional offices to ensure that Hydrocephalus is a condition that remains eligible for the Congressionally Directed Medical Research Program (CDMRP). Hydrocephalus advocates have also worked hard to have $5 million set aside specifically for hydrocephalus research.

The U.S. House of Representatives is working fast to approve funding numbers for Hydrocephalus research and other key programs. The committee that decides on funding levels for next year has decided to flat fund research in the CDMRP. This isn’t the best news, as we want there to be an increase in funding that would allow for more breakthrough research. However, it’s also not a cut, so we can count that as a win.

So…let’s share some EXCITING NEWS. In last year’s round of research funding through CDMRP, hydrocephalus research projects were awarded five grants totaling over $18 million! 

• Dr. Maria Garcia Bonilla at Washington University in St. Louis received a Discovery Award for her project titled “Cerebrospinal Fluid Profiling in Preterm Infants with Hydrocephalus: Defining a Novel Pathway to Disability.”

• Dr. Bonnie Blazer-Yost at Indiana University received a Focused Program Award for her project titled “Development of Pharmacotherapies for the Treatment of Hydrocephalus and Associated Sequelae.”

• Dr. Blazeer-Yost also received an additional Expansion Award to establish a Hydrocephalus Research Center within Indiana University’s School of Science, which aims to encourage collaboration in hydrocephalus research and train future hydrocephalus researchers.

• Dr. Pat McAllister at Washington University in St. Louis received an Investigator-initiated Research Award.

• Dr. Yong-Kwon Hong at University of Southern California received a Technology/Therapeutic Development Award.

As you can see, there is great research happening. This would not have been possible without our advocacy efforts which successfully added hydrocephalus as an eligible condition for research dollars from the Department of Defense. Be proud of our work! We can continue to support the momentum of our scientists by continuing to push for research funding, particularly a dedicated funding line for hydrocephalus under the CDMRP. Please add your voice by visiting our Advocacy Action Center. Your members of Congress need to hear from advocates like you as they make important funding decisions! Take two minutes to add your voice and then share with your networks!

Medicaid beneficiaries historically have needed to routinely re-establish their eligibility. During the COVID-19 pandemic, Congress enacted the Families First Coronavirus Response Act (FFCRA) which required state Medicaid programs to keep beneficiaries continuously enrolled in their Medicaid program throughout the duration of the COVID-19 Public Health Emergency. At the end of March 2023, the continuous enrollment provision ended, allowing states to begin the Medicaid eligibility redetermination process.

States across the country are currently in the process of redetermining whether people covered by Medicaid should remain eligible. They are contacting everyone currently covered under their state’s Medicaid program.

If you or a family member are currently covered by a Medicaid plan, make sure your current address is on file with your state Medicaid program, and keep an eye out for correspondence from your state agency in the mail, which may be critical to keeping your coverage active. 

Here are some resources. Please share these with friends and family across social media.

Medicaid Unwinding: What Medicaid Recipients Need to Know (HA article)

Renew Your Medicaid or CHIP Coverage (medicaid.gov)

Medicare SEP Fact Sheet – This fact sheet assists people in determining whether or not they are eligible for Medicare coverage. (medicaid.gov)

All Hands On Deck: What YOU Can Do (medicaid.gov)

Medicare Part D Low-Income Subsidy, Medicaid, and the End of the Public Health Emergency: Tips for Advocates (Justice in Aging)

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

July 18 Rare Disease Congressional Caucus Briefing 

On July 18th at 12:00 pm ET, Rare Disease Legislative Advocates, in collaboration with the Rare Disease Congressional Caucus, will host a caucus briefing titled, “Delivering on the Rare Disease Community’s Imperative of Policies that Leave No One Behind”. You are invited to attend this briefing either virtually or in person in Washington D.C. For more information or to register, click here.

July 20 Rare Disease Policy Update 

Rare Disease Legislative Advocates (RDLA) will host a webinar on on Thursday, July 20th from 12:00pm ET-1:00pm ET. Attendees will be briefed on pressing health policy topics.. Closed captioning and Spanish translation services are available in real-time. Click here to register.

August 7-18 Rare Across America 

Registration closes July 11th. Join Rare Disease Legislative Advocates (RDLA) for Rare Across America! While all forms of Hydrocephalus across the age spectrum are not considered a “rare disease,” we are still members of the rare disease community as many etiologies themselves can fall into the rare category. Rare Across America allows you to join advocates from other disease and condition communities to make an impact on federal policy close to your home. RDLA organizes meetings with your Members of Congress and/or the Member’s staff during the congressional August recess. Virtual and In-Person meetings will take place between August 7th and 18th. All House meetings will be held in-person at the Representative’s district office and all Senate meetings will be virtual. The RDLA team also helps you prepare for meetings, provides legislative resource materials, and hosts pre-meeting training webinars. No prior experience is necessary.Click here to learn more and register.

Okay, Advocates,
LET’S GET TO WORK THIS SUMMER!