Over the last several months, Congress has taken some exciting steps to help the Hydrocephalus community! Legislators are working to improve healthcare outcomes for patients with neurological conditions. These actions could make a big difference in the lives of patients living with hydrocephalus, but in order to make sure Congress continues to move forward, we need to continue to tell them how important these measures are to our community.
One of the issues that has been top-of-mind for legislators is the development of a national registry for neurological diseases. Last year, the House of Representatives passed sweeping legislation called the 21st Century Cures Act (H.R. 6), which aims to improve the development of new treatments. The bill includes language that would create a National Neurological Disease Surveillance System. This system would track data pertaining to neurological conditions like hydrocephalus.
The Senate is currently working on a package similar to 21st Century Cures called the Senate Innovation Initiative. Like the House bill, it would create a National Neurological Disease Surveillance System. The Hydrocephalus Association is working as part of a coalition of organizations to help both the House and Senate strengthen this provision so that any final agreement maximizes benefit to researchers and individuals living with neurological conditions. The surveillance system’s inclusion in both 21st Century Cures and the Senate Innovation Initiative package demonstrates recognition among members of Congress that researchers and patients alike would greatly benefit from a standardized means of tracking neurological conditions.
In addition, Congressman Chris Smith (R-NJ-04) has introduced and is actively promoting a bill to create a registry specifically for hydrocephalus. The Advancing Research for Hydrocephalus Act (H.R. 2313) calls upon the Centers for Disease Control and Prevention (CDC) to collect information on the incidence and prevalence of hydrocephalus across a wide range of demographics, including changes in epidemiology over time. This type of registry does not currently exist on a national scale and the data collected could help researchers better understand how hydrocephalus affects various populations and thereby develop superior treatments for the condition.
To raise awareness for H.R. 2313, the Hydrocephalus Association and the Pediatric Hydrocephalus Foundation hosted a Congressional Hydrocephalus Caucus briefing to educate Caucus members, as well as other members of Congress, about hydrocephalus and the need for a registry. The briefing was informative and emotional, with a patient, Adrienne D’Orio, telling her story of the struggles of a childhood plagued by hydrocephalus. Dr. Abhay Moghekar of Johns Hopkins Medicine also spoke at the briefing, explaining the desperate need for a registry like the one proposed by H.R. 2313. Congressman Chris Smith delivered a rousing address encouraging attendees to sign on as co-sponsors of H.R. 2313 and to support the hydrocephalus community. This briefing was a strong first step towards educating members of Congress about the impact of hydrocephalus and the need to create a registry. Moving forward, we must continue to tell Congress our stories and encourage them to join the Congressional Pediatric and Adult Hydrocephalus Caucus to remain up-to-date on legislation relevant to the condition.
Clearly, Congress is hearing our message and starting to act on measures that will help hydrocephalus patients and their families. And that’s really exciting! But in order to make sure legislators continue to prioritize these measures, we need to keep pushing our message to the forefront on Capitol Hill. To continue to build upon the momentum we’ve gained, we need your help.
There are a couple ways you can take action. First, you can follow a few easy steps right now and ask your lawmakers to co-sponsor the Advancing Research for Hydrocephalus Act (H.R. 2313).
Once you’ve sent that action alert, you can take your advocacy game to the next level by setting up a face-to-face meeting in your legislators’ offices close to home. In August, members of Congress leave Washington, DC, and return to their states or districts to meet with people just like you, their constituents. Find the office closest to your house and set up a meeting with the staff in that office to tell them how hydrocephalus has affected you and what a difference a registry could make for the hydrocephalus community.
These seemingly small actions can have a powerful impact in ultimately making a patient registry for hydrocephalus a reality.