Get the Hydrocephalus Scoop on Capitol Hill for May 2024

Hydrocephalus Association’s Advocacy Update

Healthcare Transition on the Hill!

The Hydrocephalus Association advocacy team has been busy meeting with congressional offices to educate them on issues specific to the complex care community. Our lobbying efforts have centered on an issue that is all relevant to pediatric hydrocephalus patients: the transition from pediatric to adult care providers. 

To address the need for action, HA recently co-launched the National Partnership for Pediatric to Adult Care Transition (NPPACT) with the Spina Bifida Association. Our main goal of the coalition is to engage with stakeholders in the patient advocacy community to eliminate what we call a “patient care cliff”. As young adults in the complex care community transition to an adult healthcare provider, many are left to navigate the ever-complex healthcare system on their own. The challenge can be described by the article, I Am Not The Doctor For You, which provides various examples why providers stay away from patients with disabling conditions. 

Adult neurosurgeons or other providers may not  take hydrocephalus patients due to the complexity of their condition. Lack of healthcare transition coverage and assistance on top of this can leave patients with feelings of loneliness and anxiety. These barriers can result in gaps that are life threatening. Patients may be dropped from pediatric neurosurgeons due to age limits. In the time it takes for a patient to search for an adult neurosurgeon, they may go into shunt failure. The patient risks having surgery performed by a neurosurgeon who may not understand their medical history or hydrocephalus altogether. Although terrifying, this is a common occurrence that many pediatric hydrocephalus patients must face. 

On top of educating congressional offices on the issue, NPPACT is working to guarantee an update from the U.S. Health and Human Services Agency (HHS) on what they are doing to assist pediatric individuals making this transition. A critical assessment of current government infrastructure is needed to provide valuable information for where patient stakeholders and lawmakers will go next. 

If you or a loved one has experienced challenges while making this transition, please reach out to to share your story!

Better Late Than Never! Telehealth Legislation Advances

You have recently heard ALOT about the importance of new telehealth legislation making the rounds in Congress; and for good measure! With the expiration of telehealth flexibilities occurring at the end of 2024, it is crucial that lawmakers either permanently or temporarily expand measures to ensure patients have access and coverage to virtual healthcare visits and services.

The House Ways and Means Committee unanimously advanced legislation that would expand Medicare telehealth flexibilities for two additional years after their expiration in December. The Preserving Telehealth, Hospital, and Ambulance Access Act (H.R. 8261) would ensure that Medicare patients will have access to telehealth services for an additional two years after the telehealth flexibilities expire in December, 2024. 

Additionally, the House Energy and Commerce Health Subcommittee passed similar legislation. The Telehealth Modernization Act (H.R.7623) would remove originating and geographic site restrictions for telehealth services and permanently ensure that Qualified Health Centers and Rural Health Clinics can provide telehealth services with adequate reimbursement. HA will be closely monitoring these bills as they reach the full House floor.

Safe Step Act Sign On Letter 

One of the crucial pieces of legislation supported by HA is the Safe Step Act (H.R. 2630). This legislation would establish a timely exemption process for step therapy protocol within group health plans. Step therapy is a practice where healthcare plans may require patients to “fail first” on a treatment before the plan will cover the treatment initially prescribed by their provider. 

Initially used to decrease costs, the procedure can lead to major delays for patients. Lags in needed treatments can make patient symptoms worse. Failed treatments may have additional health damages as well. The procedure essentially removes the decision making power from providers and allows health plans to decide what is best for patients. These quality care barriers are burdensome to the hydrocephalus community and we must create alternatives to strengthen accessibility to necessary treatments.

To reinforce the importance of this creating an exemption process, HA has signed on to a letter by the Safe Step Act Ad Hoc Coalition urging members of the Congressional Committee on Education and the Workforce to advance the legislation. 

Congressman Pallone (NJ-06) Joins the Hydrocephalus Caucus

Our most recent addition to the Hydrocephalus Caucus is Congressman Frank Pallone (NJ-06)! His membership is exciting for a few reasons. He joins as the 5th member of the New Jersey Congressional delegation.  He is also the ranking member of the powerful House Energy and Commerce Committee, which has jurisdiction on a variety of different healthcare legislation. This brings the Caucus total to 29! We are so close to 30. For those looking to increase this number, please reach out to become involved!

The Energy and Commerce Health Subcommittee recently voted up a piece of legislation important to the hydrocephalus community, which brings us to our next piece of news.

Important Legislation Reported out of E&C Health Subcommittee 

The Energy and Commerce Health Subcommittee unanimously voted through the Accelerating Kids Access to Care Act (H.R. 4758)! The bill, which HA and many others in the patient space have been supporting, would streamline the process for state pediatric providers to enroll on another state’s Medicaid program. By eliminating red tape in this process, it will strengthen the ability for kids with complex medical issues to receive life-saving care from physicians that are experts in their field. 

To read more about the subcommittee’s actions, click HERE!


July 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 July 3rd at 7 pm eastern. If you haven’t signed up yet, click here to register.

July 25-27 18th National Conference on Hydrocephalus – HA CONNECT   

HA CONNECT, the world’s largest conference on Hydrocephalus, takes place this July in Tampa, Florida. Come get insights into living our best lives with hydrocephalus through interactive sessions, expert speakers, evening events & more! Registration is open. Visit to learn more.


SAVE THE DATE! 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.

We will be sending out more information shortly. In the meantime, HERE is a link for those already interested in signing up. Remember this is an IN-PERSON event in Washington, D.C. Those who are interested to learn more, please reach out to


Was this article helpful?

Thanks for your feedback!