Big Wins for Hydrocephalus on Capitol Hill

In 2020, HA’s advocacy program achieved several goals related to research, Congressional awareness, and surprise billing.

Research: In concert with the Defense Health Research Consortium, we protected hydrocephalus research at the Department of Defense by ensuring funds continue to be allocated for the Congressionally-Directed Medical Research Program (CDMRP). In addition, working with Senator Patty Murray and her staff, we further ensured hydrocephalus continues to be eligible for funding under the CDMRP Peer-Reviewed Medical Research Programs. These funds must be approved every year and are often the subject of Congressional scrutiny.

Awareness: We continued our work building membership in the Congressional Hydrocephalus Caucus, resulting in a total of 10 members by the end of the 116th Congress (2019-2020). In addition, we worked with the chairs of the caucus, Congressman Chris Smith (R-NJ) and Congressman Lloyd Doggett (D-TX), to recognize Hydrocephalus Awareness Month through statements in the Congressional Record. Learn more about the Congressional Hydrocephalus Caucus members.

Surprise Billing: HA joined patient groups across the country in calling for a fix for “surprise billing” circumstances where patients are faced with unexpected medical bills because their insurance doesn’t cover critical services. Congress passed a patient-supported fix to the problem in December 2020.

HA Partners with Bergen County Board of Commissioners to Raise Awareness

For Hydrocephalus Awareness Month, the Hydrocephalus Association partnered with the Bergen County Board of Commissioners to bring more attention to the condition. In a new video series, "Conversations with our CEO," Diana Gray, the Hydrocephalus Association's President & CEO, interviewed Bergen County Commissioner Steven Tanelli about his passion for this cause and hopes for the future.

In addition, the Bergen County Board of Commissioners adopted a resolution naming September Hydrocephalus Awareness Month. The resolution was introduced by Mr. Tanelli.

“As we just celebrated my grandson's 4th birthday, I clearly recall the days leading to his birth. We received the news that he would need to be rushed into surgery to alleviate the excess accumulation of fluid compressing his brain or a condition known as hydrocephalus. Prior to that day, not one person in my family had heard of the life-threatening condition. The experience changed our lives forever. We are eternally grateful for the amazing quality of care my grandson received at Hackensack University Medical Center. Since his birth, my mission has become to raise hydrocephalus awareness and it is my hope that this resolution along with our social media partnership with the Hydrocephalus Association serves as another small step toward that goal,” said Bergen County Commissioner Steven A. Tanelli.

The resolution adopted by the Bergen County Board of Commissioners on September 2, 2020, recognized the need to increase public awareness, research funding, and information regarding hydrocephalus in Bergen County and throughout the United States.

“On behalf of the over one million people living with hydrocephalus in the U.S., we are grateful to Commissioner Tanelli and the entire Bergen County Board of Commissioners for their support of Hydrocephalus Awareness Month. Hydrocephalus affects hundreds of thousands of Americans, in every stage of life, from infants to the elderly, yet it is relatively unknown among the general public. Efforts like this resolution will go a long way toward raising awareness of this condition in New Jersey,” said Amanda Garzon, National Director of Program Services and Communications for the Hydrocephalus Association.