Get the Hydrocephalus Scoop on Capitol Hill for July 2024

Hydrocephalus Association’s

JULY ADVOCACY NEWSLETTER 

Join the Hydrocephalus Association and use your voice to advocate for the condition of hydrocephalus!
September 4th, at 7:00 pm ET

Register HERE for the Hydrocephalus Advocacy Update

The end of July means….AUGUST RECESS. For the majority of August, Members of Congress will be back in their district. The period allows constituents to meet directly with them to discuss issues pertinent to their community. In our case, it means hydrocephalus awareness! 

Lawmakers are interested in hearing about the issues most important to their voters. By educating them on the condition and sharing your story, it provides them with the reasoning for why this issue is important. They may not be knowledgeable about hydrocephalus. Therefore, your advocacy can open their eyes to the common struggles of hydrocephalus patients living in their district and around the country.

Lawmakers will return to Washington in early September. Among the most important issues they must address upon their return is averting a government shutdown. Yes…you have heard this story before. Congress must pass a bipartisan Continuing Resolution to keep the government open.

NEW CAUCUS MEMBERS KEEP COMING

The Pediatric and Adult Hydrocephalus Caucus welcomed 3 new members in July! Congressman Jason Crow (CO-6) became the third member of the Colorado delegation joining Congresswoman Caraveo and Congresswoman Pettersen. The Hydrocephalus Caucus also brought on its first two members from Northern California, Congressman Kevin Mullin (CA-15) and Congressman Kevin Kiley (CA-03). These new members bring the total number of California Caucus members to four. 

Since reconstitution in November, the tally has grown from 13 to 34 members of Congress. The dedication and hard work of hydrocephalus patient advocates continues to fuel this momentum. To view the current list of the Congressional Hydrocephalus Caucus, click HERE.

SUPPORT FOR CONTINUOUS MEDICAID AND CHIP COVERAGE 

The Hydrocephalus Association recently signed onto a letter from our partner, Families USA, in support of the Stabilize Medicaid and CHIP Coverage Act (S. 3138 & H.R. 5434). The legislation was introduced by the offices of Senator Sherrod Brown (OH) and Representative Debbie Dingell (MI-12). 

The bill would establish continuous 12 month Medicaid and CHIP (Children’s Health Insurance Program) eligibility for qualifying beneficiaries across each state. This means that once an individual qualifies for the program, they are eligible for the benefits and coverage for at least 12 months. The expanded coverage would provide ease of mind to the many hydrocephalus and chronic condition patients who regularly rely on these government healthcare programs. Strict requirements and administrative mistakes may cause beneficiaries to be wrongly thrown off the program while still being eligible. Coverage gaps caused by these mistakes can leave patients unable to access regular checkups and medical services. There are 5 states who already provide 12 month continuous eligibility for all or some adults.

CONGRESSIONAL CHAMPION SPEAKS AT NATIONAL HYDROCEPHALUS CONFERENCE

The Hydrocephalus Association recently hosted its 18th National Hydrocephalus Conference in Tampa, FL. The conference was headed by a welcoming message from Senator Maggie Hassan (NH). The message centered around the need to strengthen healthcare access for individuals like her son, who was born with hydrocephalus. Her family’s story was one of the main factors that fueled her interest in running for public service. 

To view the whole video, click HERE.

OPPORTUNITIES TO ENGAGE

SEPTEMBER 18-19 RALLY FOR MEDICAL RESEARCH ALONGSIDE THE HYDROCEPHALUS ASSOCIATION

The Hydrocephalus Association is taking part in the Rally for Medical Research Hill Day and we want YOU to attend and advocate for the hydrocephalus community. The event will invite patient advocates from across the country to Washington, D.C. to advocate for renewed funding of the National Institutes of Health (NIH). The NIH funds a variety of groundbreaking hydrocephalus research each year and is crucial in ensuring a cure for hydrocephalus.