California must call for equity in federal brain injury bill

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OPINION — Senators Adam Schiff and Alex Padilla, of California, along with their colleagues in the Senate and House, must demand equity before passing Senate Bill 5600, the Dennis John Benigno Traumatic Brain Injury Program Reauthorization Act. 

The original legislation was signed into law in 1996. Yet, three decades later, deep disparities in care have continued to exist among those living in rural areas and those from racial and ethnic communities. 

California residents have a lot at stake when it comes to this legislation, considering that it is home to about 2.3 million residents living in rural areas and home to one of the largest communities of racial and ethnic groups in the country — 15.7 million Hispanics, 6 million Asians and 2 million Blacks.

Health equity is not just a buzzword to throw around in lecture halls and black-tie fundraisers. For me, as a pediatric survivor who sustained a severe cerebral contusion in 1981 and received care at Sharp Rehabilitation in San Diego, I live with this thought on a regular basis: Too many TBI survivors today will not have access to the opportunities that came my way nearly half a century ago. 

The reasons for this have nothing to do with any federal law. My recovery during the early 1980s was not driven by federal law, but because enough people cared enough to work with a young survivor who was lost and without hope.

I may have been lucky. There is compelling evidence from a 2023 scoping review of the literature by Leslie Johnson and Isabella Diaz (North Carolina Central University) that race and ethnicity was the most commonly reported social factor impacting TBI followed by health insurance status. Minority patients were also less likely to be discharged to inpatient rehabilitation than their non-Hispanic white counterparts.  

In California, these issues are compounded by the distance that patients have to travel for general inpatient care as well as specialized care. There are limited numbers of hospitals and rehabilitation facilities that specialize in the care of brain injury survivors. According to CARF International, a nonprofit accreditor of health services, and the California Department of Rehabilitation, there are no inpatient rehabilitation programs for brain injury survivors in many counties throughout the state, stretching from Plumas to Calaveras and Imperial Counties.

My experiences and observations force a hard question that every lawmaker must wonder: Why haven’t the disparities in care among those living in rural areas and those racially and culturally diverse communities been reduced in a measurable way with all the money being spent on public awareness? Black, Hispanic and Native American children were more likely to die in the hospital following TBI than non-Hispanic White children, according to a 2021 study from the Neurosurgical Associates of San Antonio and the University of Texas Health Science Center at San Antonio.

Congress needs to ensure that safeguards are built into S. 5600 when lawmakers from both chambers vote on this reauthorization act. We cannot pass S. 5600 without fiscal safeguards to ensure taxpayer and donor funds actually reach the traditionally defined TBI survivors. The TBI Act, from my view, was passed to serve all TBI survivors — not just for a certain subgroup of people.

For example, I propose that the bill strikes the expanded definition of traumatic brain injury so that the TBI Act will retain its focus on those sustaining a traditionally defined definition of TBI, as opposed to including brain infections and other non-traumatic brain injuries. Additionally, I believe there should be mandatory independent audits and anti-lobbying requirements for any non-profit advocacy organizations receiving federal funds under S. 5600.

Our duty as a society is simple. Every child with a traumatic brain injury deserves equal access to care, and every child with a traumatic brain injury deserves a future beyond trauma.

This is why I fight the fight as a 64-year-old pediatric survivor — because some kid out there will sustain a traumatic brain injury and lose out on the chance of a good recovery and outcome. 

Brason Lee is a 64-year-old pediatric survivor of a severe traumatic brain injury.