Pascrell Offers Testimony in Support of Traumatic Brain Injury Programs

Energy and Commerce Subcommittee holds hearing on Pascrell bill to renew programs

WASHINGTON, DC – Congressman Bill Pascrell, Jr. (D-NJ-09), the co-chairman Congressional Brain Injury Task Force, today offered testimony to the House Energy and Commerce Subcommittee on Health as the panel held a hearing on his legislation, H.R. 7208, the bipartisan Traumatic Brain Injury Program Reauthorization Act. Pascrell recently introduced the measure with his task force co-chair, Rep. Don Bacon (R-NE).

“The TBI Act has been the major federal program to support the medical and societal needs of 5.3 million individuals living with lifelong disabilities due to TBI,” stated Rep. Pascrell in his testimony. “From vehicle accidents to youth sports to servicemembers wounded in combat, the causes of brain injuries are diverse and those suffering with the after affects need our attention and federal resources to combat this silent epidemic. I hope this committee will consider including [our] suggested policy changes…”

Specifically, Congressman Pascrell called on the Health Subcommittee to help:

• Reauthorize the Traumatic Brain Injury Act
• Increase the authorization level for the TBI State Partnership Program from $7.3 million to $19 million for fiscal years 2025 to 2029
• Federally designate brain injury as a chronic condition
• Prioritize clarifying service eligibility for the TBI Act to make distinctions between external force injuries and internal force injuries
• Continue to Authorize the CDC TBI Programs and National Concussion Surveillance System
• Include the Administration for Community Living Protection and Advocacy Program in any amended TBI Act

Founded by Congressman Pascrell in 2001, the Congressional Brain Injury Task Force’s mission is to further provide education and awareness of brain injury (incidence, prevalence, prevention and treatment) and support funding for basic and applied research on brain injury rehabilitation and development of a cure.

“Over two decades ago, I co-founded the Congressional Traumatic Brain Injury Task Force. The issue of Traumatic Brain Injury (TBI) became a personal matter to me early in my first term when I met with one of my constituents, Mr. Dennis John Benigno. Dennis’s 15-year-old son, Dennis John, was critically injured the summer of 1984 after being struck by a car. Dennis John suffered a severe brain injury that left him totally disabled. Before then, I had no intimate knowledge about TBI nor its terrible impact on families. This became the impetus behind my passion for championing the cause in the Congress … Dennis’s courage, dedication, and love became my primary inspiration to try and make a difference in the fight for Americans living with TBI.” Pascrell told the committee about his Clifton, New Jersey, constituents. Dennis John Benigno sadly passed away in late January.

Brain injury was the signature wound in both the Iraq and Afghanistan wars. According to the Centers for Disease Control and Prevention, between 3.2 million and 5.3 million people live with a TBI-related disability in the United States.

“The reauthorization of the TBI Act in 2024 is a pivotal opportunity to strengthen our nation’s response to the significant prevalence and complex challenges associated with brain injury. We urge Congress to consider these proposed improvements, informed by consensus within the brain injury community, to ensure that every individual affected by a brain injury receives the care and support they need to live functional and independent lives,” stated the Brain Injury Association of America, the National Association of Head Injury Administrators, and the United States Brain Injury Alliance in their testimony supporting the Pascrell/Bacon legislation.

Pascrell’s complete written testimony is below.

The Honorable Bill Pascrell, Jr. Testimony before House Energy and Commerce Subcommittee on Health

Legislative Proposals to Support Patients and Caregivers

2123 Rayburn House Office Building

February 14, 2024

Chair McMorris Rodgers, Ranking Member Pallone, Chair Guthrie and Ranking Member Eshoo, thank you for holding today’s hearing and including my legislation, H.R. 7208, to reauthorize Traumatic Brain Injury programs.

First authorized in 1996, the TBI Act has been the major federal program to support the medical and societal needs of 5.3 million individuals living with lifelong disabilities due to TBI. In fact, 2.5 million Americans experience a brain injury annually. Since the bill’s introduction, I have heard from stakeholders seeking important amendments to this measure and would like to suggest some proposed changes to the program in my testimony.

Over two decades ago, I co-founded the Congressional Traumatic Brain Injury Task Force. The issue of Traumatic Brain Injury (TBI) became a personal matter to me early in my first term when I met with one of my constituents, Mr. Dennis John Benigno. Dennis’s 15-year-old son, Dennis John, was critically injured the summer of 1984 after being struck by a car. Dennis John suffered a severe brain injury that left him totally disabled. Before then, I had no intimate knowledge about TBI nor its terrible impact on families. This became the impetus behind my passion for championing the cause in the Congress.

The Benignos helped me to become acutely familiar with the issue of traumatic brain injury as their son was unable to communicate or care for himself. As the family struggled to find a cure for Dennis John, it became clear to them that there existed very little awareness and treatment for TBI. Dennis and his wife Rosalind chose to act in promoting TBI awareness. Dennis’s courage, dedication, and love became my primary inspiration to try and make a difference in the fight for Americans living with TBI.

Thereafter, I began championing Dennis’s cause by working with other external stakeholders along with my colleagues in Congress. Two important steps were taken in our effort to address this silent epidemic: First, in the 106th Congress, thanks to this committee we passed the Children’s Health Act of 2000 [P.L. 106-310], which included important amendments to the Traumatic Brain Injury Act of 1996. This bill created a new education and awareness campaign run by the Centers for Disease Control and Prevention (CDC) and required the U.S. Department of Health and Human Services (HHS) to make grants to states to create TBI registries that aided in critically important data collection. Secondly, in 2001, I along with Congressman Jim Greenwood (PA-8) co-founded the Congressional Brain Injury Task Force. Today, I am proud to report that the Task Force has grown to nearly 70 bipartisan, bicameral Members working across the aisle on behalf of the 5.3 million Americans living with a permanent traumatic brain injury.

The primary mission of our Congressional TBI Task Force is to: (1) increase awareness of the incidence and prevalence of brain injury in the United States; (2) explore research initiatives for rehabilitation and potential cures; (3) study and address the effects such injuries have on families, children, education and the workforce; and (4) bring improved services to individuals with brain injury. We held our first Task Force congressional briefing on June 27, 2001. Twenty-three years later, our Task Force serves to inform fellow Members of Congress and their staff about cutting-edge research, findings from recent studies on rehabilitation, and the challenges faced daily by those with brain injuries.

Regrettably, Dennis John passed away on January 29, 2024, after a 40-year battle with TBI. One of the best ways to thank him for his being the inspiration for our task force, and all the change and progress it was inspired, is memorialize his legacy in perpetuity by renaming H.R. 7208 to be the Dennis John Benigno Traumatic Brain Injury Reauthorization Act of 2024.

My second priority as we negotiate H.R. 7208 in Committee is to Increase the Authorization Level for the TBI State Partnership Program from $7.321 million to $19 million for fiscal years 2025 to 2029. Realizing that we are under the strict budget rules, the increase in authorization closely aligns with the brain injury community’s annual appropriations requests to ensure that every state is funded at an adequate level. Presently, there are 31 states participating in the Administration for Community Living’s (ACL) State Partnership program given the 50:50 matching requirement (see attached.) There are 19 states that do not participate.

We have learned that states participating in ACL’s State Partnership grant had higher levels of community participation and life satisfaction on average for people with living with TBI. Conversely, the non-participating states cannot afford the state matching funding that is required to accompany federal dollars, resulting in poorer health outcomes for TBI patients. ACL’s State Partnership Program was created to aid survivors of a TBI with person-centered, culturally competent systems of services to support maximum independent living. This federal initiative helps states to access technical assistance for brain injury programs, allowing for ACL to integrate brain injury focus into their other programs. Other areas of focus include mental and behavioral health as well as those persons with a dual diagnosis, older adults, and independent living. I urge you to increase the authorization funding levels to $19 million for fiscal years 2025 to 2029.

Third, the next priority for the 2024 Traumatic Brain Injury Reauthorization Act is to Designate Brain Injury as a Chronic Condition. The reason for this request is to help standardize a medical definition that denotes the long-term effects of persons living with a brain injury. Currently, our U.S. health care system and the public often view brain injuries as a one-time event. However, this medical condition should be viewed as the beginning of a process of recurring and/or persistent effects that can lead to the development of recurring, persistent, and/or dynamic effects in a significant segment of brain injury survivors.

While many people who sustain a brain injury experience only temporary symptoms or neurological impairment, other people experience permanent changes and are impacted throughout their lives. This evidence-based update on how brain injury is perceived in the clinical community and the public at large will help further clarify what is occurring in practice with respect to the lifelong impact of TBI, as well as the chronic treatment of brain injury over the lifespan. As such, I am requesting that the Committee, through the mark-up process, amend language to address this issue as follows: “In collaboration with the Director of the Centers for Disease Control and Prevention (CDC), the Secretary shall examine the evidence base for designating brain injury as a chronic condition that can impact individuals with brain injury across the lifespan.”

Fourth, I am requesting that the Committee prioritize Clarifying Service Eligibility for the TBI Act. Particularly, within the Brain Injury community, there are two types of injuries to note: external force, through a force that constitutes a traumatic brain injury, and internal force, through a loss of oxygen to the brain deemed as acquired (ABI). ABI is a classification of brain injury based on a non-traumatic event which includes, but is not limited to stroke, tumor, arteriovenous malformation, and aneurysm. In contrast, TBI is manifested by an external force resulting from the following events including, but not limited to car crashes, falls, and assaults.

The current definition of “traumatic brain injury” within the legislation is inclusive of both traumatic and nontraumatic/anoxic brain injury, which has caused confusion about the target of developing services. Due to the increases in brain injury from loss of oxygen to the brain (anoxic brain injury) from intimate partner violence, substance use disorder, and other causes, many state programs are serving systems that support both traumatic and non-traumatic brain injury. While the current definition does include both traumatic and nontraumatic/anoxic brain injury, this definition is more inclusive of all types of brain injury and is recognized and accepted by many of the major brain injury organizations. This update in language will clarify the current intent of the law and reflect what is occurring in practice.

Fifth, I am requesting that the Committee amend H.R. 7208 to Continue to Authorize the CDC TBI Programs and National Concussion Surveillance System. Specifically, our proposed recommendation would be to reauthorize the CDC TBI Programs, including the National Concussion Surveillance System (NCSS) through 2029 at the current authorization level of $11.75 million annually with $5 million allocated to the National Concussion Surveillance System. This would equal total funding of $58.75 million over five years, which is the same as the current authorization level.

The justification for this increase is predicated upon CDC’s TBI Program, which is responsible for assessing and reporting on the incidence and prevalence of TBI in the United States. The 2018 TBI Reauthorization Act created a NCSS as part of the CDC to support better data collection on TBI, particularly concussions. Unfortunately, existing national data underestimate the prevalence of brain injury across the country. Most estimates are projected solely from data collected through emergency department admissions, which is not reflective of the many individuals who do not seek care for concussions, receive care outside of emergency departments, or those who are not reported from the emergency room.

Recently, the CDC conducted a pilot program to validate its methodology for better data collection of this condition. The pilot of the NCSS has indicated much higher levels of brain injury than are currently reported, with adult respondents reporting more than 30 times as many brain injuries in the past 12 months compared to estimates using emergency department data from national datasets. Children and adolescents reported approximately 17 times as many brain injuries in the past 12 months, as compared to estimates using emergency department visits from national datasets. The NCSS needs to be fully funded at $5 million for CDC to continue its vitally important work in this area.

Lastly, on behalf of the Brain Injury community, I am requesting amended language for inclusion of the ACL Protection and Advocacy Program. Specifically, we are proposing an increase in the authorization level to $6 million and to allow Protection and Advocacy access to federal facilities (e.g., VA Hospitals and federal prisons) through 2029. The TBI Act currently authorizes every state to have a Protection and Advocacy for Individuals with Traumatic Brain Injury program, funded at a minimum of $50,000 per state. Effective Protection and Advocacy services for people with a TBI can lead to increased independence and community participation. This increased federal funding and access to federal facilities for Protection and Advocacy would create greater access for the states.

Thank you for your considering the TBI Act reauthorization. From vehicle accidents to youth sports to servicemembers wounded in combat, the causes of brain injuries are diverse and those suffering with the after affects need our attention and federal resources to combat this silent epidemic. I hope this committee will consider including the suggested policy changes we have been in collaboration with key stakeholders including the Brain Injury Association of American, the National Association of Head Injury Administrators and the United States Brain Injury Alliance. Thank you for your help advancing this important measure.

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