The Hydrocephalus Scoop on Capitol Hill for September 2023
Hydrocephalus included in the CDMRP CRRP
Our House champions were able to secure a provision in the recent House Defense Appropriations bill that will make hydrocephalus eligible for the Combat Readiness Research Program (CRRP) under the Congressionally Directed Medical Research Program (CDMRP). The CRRP focuses on research relating to forward-deployable solutions that address life threatening conditions for service members on battlefield settings. This includes solutions for mitigating or quickly measuring the impact of a traumatic brain injury (TBI), one cause of hydrocephalus. It is estimated that 14% of individuals who suffer from a severe TBI could develop hydrocephalus. Funding opportunities through the CRRP are in addition to funding through the Peer Reviewed Medical Research Program (PRMRP), of which hydrocephalus qualifies. We will now follow the final approval process closely to see if this eligibility is included in the final Defense Appropriations bill that is approved by the Senate and signed by the president.
Rally for Medical Research 2023
On September 14, the Hydrocephalus Association participated in the Rally for Medical Research. Davis Kaderli, HA’s Advocacy Engagement Manager, joined other patient organizations to lobby Congress for FY2024 National Institutes of Health (NIH) funding increases. The NIH National Institute of Neurological Disorders and Stroke (NINDS) funds a variety of hydrocephalus research studies that directly benefit our community. Davis met with multiple Senate and House offices to lobby for NIH and educate members on the important work of NINDS.
HA has joined the rest of the research community in urging congress to pass a NIH budget of at least $51 billion for FY2024 cycle, a slight increase over last year’s funding. The House Appropriations Subcommittee on Labor, Health and Human Services, Education (LHHS-E) recently passed its LHHS-E appropriations bill that would provide $44.66 billion for NIH base funding, which would be a $2.8 billion decrease in funding from FY2023. This would be extremely damaging to the lifesaving research carried out by the NIH. While the House passed a decrease in funding, the Senate Appropriations subcommittee passed its LHHS-E appropriations bill that would provide $49.22 billion in funding to the NIH; roughly the same funding as FY2023. We believe the Senate funding line should be the absolute bottom line amount for FY2024 funding cycle.
HA’s Medical Advisory Board Talks Advocacy
The HA Medical Advisory Board will hold its second meeting of the year at the end of September. On the agenda will be legislation that will be of focus to legislators on Capitol Hill in 2024. We will specifically discuss telehealth legislation and the ever-changing landscape of technology and medicine, including the use of artificial intelligence (AI), augmented reality (AR), and machine learning (ML). We are excited to host lively conversations on these topics and to gain the perspective of the medical providers. It’s not just the doctors we want to hear from! We will be briefing all of you on our findings and get the patient perspective on these issues. Having the perspectives of both our patient and physician communities will help us shape our advocacy efforts.
The SSI Savings Penalty Elimination Act
HA recently joined other patient advocacy groups in endorsing the SSI Savings Penalty Elimination Act. This piece of legislation raises the asset limit for individuals receiving Supplemental Security Income from $2,000 to $10,000. It also raises the asset limit for married couples from $3,000 to $20,000. This limit, which was established in 1974, has not been raised since 1989. Changing the asset amount would provide a much needed update that would bring the limit on track with recent inflation.
This bill would significantly help individuals in the hydrocephalus community who rely on SSI benefits. An updated asset amount would strengthen the opportunity for individuals with disabilities to achieve financial independence while still qualifying for SSI benefits. On top of this, an analysis by the Center on Budget and Policy Priorities found that an asset limit increase would reduce the number of beneficiaries who have their benefits reduced or terminated. This would reduce overall administrative costs for the Social Security Administration while expanding the number of qualified beneficiaries in the program.
New CMS Rule to Increase MSP Enrollment
The Centers for Medicare and Medicaid (CMS) recently finalized a rule that would allow older Americans and individuals with disabilities to more easily enroll in the Medicare Savings Program. The rule automatically enrolls Supplemental Security Income (SSI) recipients into the Qualified Medicare Beneficiary eligibility group (a type of medicare savings program). Although there are more than 10 million individuals that are eligible for the Medicare Savings Program, many do not enroll due to administrative complications. CMS projects that this new rule will save those with disabilities around 19 million hours in paperwork each year and will reduce state administrative time.
Congressional Members Support Hydrocephalus Awareness!
THANK YOU to all of you who participated in the inaugural World Hydrocephalus Day and continue to participate in Hydrocephalus Awareness Month. Representative Lloyd Doggett (D-TX-35) and Representative Abigail Spanberger (D-VA-7) got into the act! Rep. Doggett’s posts can be found on Twitter and Facebook. Rep. Spanberger’s posts can be found on Twitter. If you’re their constituent, take a second to comment on their post thanking them. There are still some days left in September! Continue posting for #HAM23 and make sure to tag your member of Congress.
Awareness got LOCAL, too!
Advocates around the country worked with their Governor’s offices to have September declared Hydrocephalus Awareness Month in their states. The following states have issued proclamations for this year: Arkansas, Delaware, Kansas, Louisiana, Massachusetts, Michigan, Missouri, Nebraska, New Jersey, South Carolina, Texas, Utah, Virginia, Indiana, Pennsylvania, Wisconsin, Colorado and DC. Congratulations to all of our advocates for helping raise awareness at the state level.
Lastly…We are Building our Grassroots Network! That’s You!
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. Please spread the word!
OTHER OPPORTUNITIES TO ENGAGE
November 1 Hydrocephalus Advocacy Update
Don’t forget to join us for our next Advocacy Update on November 1st. If you haven’t signed up yet, click here to register.
November 4 HA Virtual Conference
Join the largest worldwide online conference about hydrocephalus! The conference opens Friday, November 3rd with online networking opportunities and closes on Sunday, November 5 with our Kids Camp. The main event takes place on November 4 and features educational sessions to address the medical, educational and social complexities of living with hydrocephalus hosted by world-renowned medical professionals and researchers. Learn more and register.
November 10 HA 40th Anniversary Gala
Join HA as we honor our legacy and look toward the future at our 40th Anniversary Gala in Anaheim, California. Justin Willman, the mastermind behind Netflix’s hit sensation Magic For Humans, will headline the event. Learn more!
November 11 Southern California Education Day
In partnership with Children’s Hospital Orange County, HA will host a half day in person educational event featuring presentations from neurosurgeons and medical professionals from across Southern California. The event is free and open to all ages. Please note this is in person and will not be recorded. Join us in SoCal!
September – November WALK to End Hydrocephalus
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.
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.