The Hydrocephalus Scoop on Capitol Hill for November 2023

The Government is Staying Open!

The House and Senate recently passed a short term bill to keep our government open. This means that there will be no government shutdown. The Continuing Resolution (H.R.6363) will fund key programs through January 19, 2024. Other key programs will be funded through February 2, 2023. This means that the National Health Service Corps and Community Health Center Fund will be funded until January 19th.

Congress was out of session last week for Thanksgiving and is back this week to vote on legislation. They will look to finalize key spending bills for the fiscal year 2024 budget that includes funding for the National Institutes of Health (NIH) and the Congressionally Directed Medical Research Program (CDMRP). You can ask your representatives to support increased NIH funding for FY 2024 by clicking HERE. Feel free to input your personal experience with hydrocephalus and how new avenues of research funding would impact you and provide hope for new treatments and cures!

HA Signs On to Letter Urging Changes for Orphan Drugs

The Hydrocephalus Association recently signed on to endorse a letter from the National Organization for Rare Disorders (NORD) urging the Biden Administration to tweak provisions in the Inflation Reduction Act (IRA) that would impact the approval process of orphan drugs for rare conditions. 

The first part of the letter urges the Biden Administration to clarify that the number of orphan drug designations FDA granted to a product has no effect on its eligibility for the Inflation Reduction Act’s (IRA) orphan drug exclusion. This “exclusion” means that orphan drugs with a single approved use will not be eligible for the Medicare drug price negotiation provision within the IRA. The second part of the letter asks for them to maintain the purpose of the orphan drug exclusion by clarifying that an orphan product becomes negotiation-eligible 7-11 years after it loses that exclusion.

You may be wondering what an orphan drug is and how this is relevant to our community. An orphan drug is a pharmaceutical that remains commercially undeveloped due to limited potential for profitability either because it will only treat a small number of people (those with a rare condition) or ones that are too costly to develop. (You can learn more here.) Future hydrocephalus drug treatments may be considered orphan drugs due to a small target population that they will benefit from. For example, the new clinical trial testing a drug combination will only benefit those who develop hydrocephalus from a brain bleed. These proposed changes could strengthen the approval process for new pharmaceutical drugs that are currently being studied. To learn more about the issue, click HERE!

CMS Publishes No Surprises Act Toolkit 

The Centers for Medicare and Medicaid (CMS) recently released a toolkit that was designed to help individuals navigate laws enacted by the No Surprises Act. The bill, which was signed into law in 2022, established consumer protections for individuals covered by group and individual health plans against surprise medical bills. 

It is important to know your rights within the healthcare system. The toolkit provides an overview of what to know about the bill and how it pertains to you. Click HERE to read over the toolkit!

New Members Join the Hydrocephalus Caucus! 

We are excited to have 3 new members, Congressman Ritchie Torres (NY-15), Congressman August Pfluger (TX-11) and Congressman Brad Schneider (IL-10), joining the Congressional Pediatric and Adult Hydrocephalus Caucus! The Caucus serves to inform the congressional community about the needs of those living with hydrocephalus, their families and caregivers. This includes funding for research from the National Institutes of Health and Department of Defense and other key health policy priorities impacting the community such as Medicare and Medicaid access, special education and rehabilitation services. 

The hydrocephalus community gains more congressional representation with every new member that joins the caucus. The support of new members will be crucial as we look forward to a busy legislative calendar in 2024. Send a message to your congressional office and ask them to join the Hydrocephalus Caucus today in our Action Center!

Senator Bob Casey (PA) Introduces the Disability Employment Incentive Act (DEIA)

U.S. Senator Bob Casey (D-PA) recently introduced the Disability Employment Incentive Act (DEIA) (S.3076). The legislation would add to three existing tax credits that help support employers who are hiring those with disabilities, including people living with hydrocephalus. 

The DEIA would increase the Work Opportunity maximum available Tax Credit from $2,400 to $5,000. This tax credit encourages employers to hire a person with a disability referred to them through the state Vocational Rehabilitation Agency, a person receiving Supplemental Security Income (SSI) benefits, or someone who is receiving Social Security Disability Income (SSDI) benefits. The DEIA would increase the Disability Access Expenditures Tax Credit from $5,000 to $10,000. This credit helps cover small business expenditures for the purpose of providing access to those with disabilities. Lastly, the bill would raise the Architectural and Transportation Barrier Tax Credit from $15,000 to $30,000. This tax credit helps cover some of the costs connected to the removal of existing physical barriers in facilities and transportation. It can also be used to cover the expenses for businesses that make their telecommunications and on-line business operations accessible for people with disabilities. 

NPH In The News!

Normal Pressure Hydrocephalus was featured on the Washington Post’s Medical Mysteries Column! The article talks about the long and tumultuous road it took for Cathy Haft to get a proper diagnosis for NPH. Her story is unfortunately all too common within the NPH community. To view the article, click HERE.

OPPORTUNITIES TO ENGAGE

January 3 Hydrocephalus Advocacy Update  

Be sure to visit our awesome Advocacy Center and take action on our legislative alerts. We need to ensure that Congress is hearing us loudly! Want to deep dive into these issues? Don’t forget to join us for our next Advocacy Update on January 3rd, 2024. If you haven’t signed up yet, click here to register.

December 5 Rare Disease Congressional Caucus Briefing

The Congressional Rare Disease Caucus is hosting a virtual caucus briefing titled: Rare Realities: Patient Experiences Driving Current Legislation. If you are interested in watching this briefing, click here to register. 

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.