Policy Corner: February 5, 2024

Federal Updates

Traumatic Brain Injury Act Up for Reauthorization

The TBI Act was passed in 1996 and has been reauthorized five times since then. This landmark legislation specifically addresses TBI prevention, research, and service delivery through grants to states. The various versions of the TBI Act over the years have established surveillance or registry programs, funded brain injury research, funded projects to reduce the incidence of TBI, and has required federal agencies to develop a plan for the improved coordination of federal activities with regard to TBI. The TBI Act is up for reauthorization in 2024.

Senators Push for More Funding for Research on Long-COVID

On Thursday, the Senate Health, Education, Labor, and Pension (HELP) Committee, chaired by Senator Bernie Sanders (I-Vt.), held a hearing on issues related to long-COVID and the lack of care and treatment for these conditions and symptoms. Individuals spoke about problems with brain fog, difficulty with breathing, fatigue, chronic pain, and dizziness preventing them from resuming their previous life routine and jobs. A second panel consisted of doctors and researchers who described their work on long COVID and provided several suggestions for improving patient care, including research on the condition.

Michelle Harkins, MD, a pulmonary and critical care physician at the University of New Mexico and an investigator for the National Institutes of Health (NIH) RECOVER study, described treating a primary care doctor who had breathing difficulty and brain fog months after her COVID illness. Though diagnostic tests were normal, the doctor left her job because she did not have the mental recall to do her job.

BIAA Expresses Concerns to Census Bureau Regarding Disability Questions for Community Survey

As a member of the Steering Committee for the Disability & Rehabilitation Research Coalition (DRRC), BIAA signed on to the letter to the director of the U.S. Census Bureau, Robert L. Santos, expressing concerns with the proposed changes to the American Community Survey (ACS) questions measuring disability. In addition to DRRC’s concern that there was a lack of involvement of disability stakeholders in the process of changing the ACS questions, DRRC believes the questions will undercount important subpopulations, including people with psychiatric conditions and those with chronic illnesses, as well as those who are living with disabilities.

The ACS provides data that is important to federal, state, local, and tribal governments to make informed decisions on the allocation of resources, planning, and responding to natural disasters. DRRC requests that the Census Bureau halt the proposed changes to the ACS and engage with the disability community to develop a stakeholder-informed approach.

State Updates

California

A California Assembly bill that would ban tackle football for young children was pulled from consideration in the legislature in January. Democratic leaders in the California State legislature were looking to prevent children age six and under from playing tackle football starting in 2025, and then expanding to preventing children age 12 and under from participating in the activity by 2029 with AB 734. The bill received bi-partisan opposition from constituents as well as legislators, ultimately receiving a veto threat from California Governor Gavin Newsom. In a statement, Governor Newsom said “I am deeply concerned about the health and safety of our young athletes, but an outright ban is not the answer. My administration will work with the Legislature and the bill’s author to strengthen safety in youth football — while ensuring parents have the freedom to decide which sports are most appropriate for their children.” This decision comes amid emerging concern about CTE and concussion prevalence in contact sports.

Florida

Florida recently introduced House Bill 1627 which, if passed, would create a statute that would

• Require the Advisory Council on Brain and Spinal Cord Injuries to annually submit a report to the Governor and state legislative bodies that contains their findings and recommendations
• Allow the State Surgeon General to issue a health advisory with respect to contact sports for minors, which would require a signed notice from a parent or guardian to allow a minor to participate in the activity
• Allow the Governor to set a minimum age for contact sports

This bill comes after the state legislature found that adolescents are particularly vulnerable to the effects of concussion and brain injury and that these types of injuries are most common in contact sports. If passed, the statute would go into effect July 1, 2024.

Maryland

Earlier this month, Maryland introduced House Bill 195 to establish an alert program specific to missing persons with cognitive impairments, which could include brain injury. The Purple Alert Program proposed under this bill establish specific guidelines and procedures for police to search for a missing person with a cognitive disability or brain injury.

Missouri

Missouri introduced House Bill 2215 at the beginning of the 2024 legislative session, which would create provisions relating to alternative therapies for veterans with PTSD and traumatic brain injuries. The bill primarily focuses on the use of hyperbaric oxygen therapy, which is a type of treatment that involves breathing in pure oxygen in order to stimulate healing. If passed, HB 2215 would allow facilities that provide hyperbaric oxygen therapy to a veteran living in the state of Missouri who has been diagnosed with PTSD or TBI and meets all other requirements outlined by the bill to receive a reimbursement for the cost of the service provided.

New Jersey

New Jersey has introduced Assembly Bill 2961, which would permit a person to indicate that they have a brain injury on their driver’s license of identification card. This designation would assist law enforcement and emergency service providers in effectively communicating with the brain injury survivor in an emergency situation. A person who opts in to this system will have their information stored in a registry that contains the survivor’s license plate information, their emergency contact information, and any other information that may assist a law enforcement officer when communicating with the person.

Utah

A House bill introduced to the Utah legislature for the 2024 session modifies provisions regarding neurological and brain injury rehabilitation services, funds, and committees. This bill combines the existing Pediatric Neuro-Rehabilitation Fund, the Neuro-Rehabilitation Fund, and the Brain Injury Fund into a single fund called the Brain and Spinal Cord Injury Fund.

The Brain and Spinal Cord Injury Fund is a government-run program that will assist in:

• Providing funding to educate the public about brain injury,
• Providing access to evaluations and short-term care,
• Developing and information and referral system for people with brain injury and their families
• Providing grants to eligible brain injury organizations to support their work

Any Utah resident who has been diagnosed as having a brain injury or other neurological condition that results in cognitive or physical impairment that can be helped by the services listed is eligible to receive support through this Fund.

This bill also combines the Brain Injury Advisory Committee, the Neuro-Rehabilitation Fund, and Pediatric Neuro-Rehabilitation Fund Advisory Committee into a single advisory committee called the Brain and Spinal Cord Injury Advisory Committee. The Committee will be made up of a diverse group of individuals, including a member of the Department of Health and Human Services, an individual who has experienced a brain injury, a parent or caretaker of someone who has sustained a brain injury or spinal cord injury, a professional who works with people who have sustained a brain injury or spinal cord injury, and more. A full list of who will make up the committee can be found here.

The Brain and Spinal Cord Injury Advisory Committee will work to:

• Identify, evaluate, and review the quality of care provided to individuals with brain injury and spinal cord injury or children with non-progressive neurological conditions
• Explore, evaluate, and review other possible funding sources and make a recommendation to the legislature regarding sources that would provide suitable funding for the advisory committee to accomplish its responsibilities