Congress is about to destroy decades of brain injury research in one vote

Congress is about to approve millions in federal spending that will teeter on the edge of compromising decades of scientific progress. S. 2898, the Dennis John Benigno Traumatic Brain Injury Program Reauthorization Act, requires the study of long-term effects of traumatic brain injury, or TBI, but its current draft undermines the very science it intends to promote. By redefining the statutory definition to include brain damage not caused by an external force, such as anoxia or infection, this bill creates a methodological nightmare by promoting the idea that combining traditional TBI survivors with non-traditional TBI survivors is scientifically acceptable. This mix would render any research findings invalid.

As a 64-year-old survivor of a pediatric traumatic brain injury who went on to complete my education and become a master-level social worker and research scientist, I cannot underscore the urgency for well-designed studies to help lead the way for all those who come — or will come — after me, even if some brain injury advocates might push for the inclusion of non-TBI as a traumatic brain injury.

I appreciate the proponents’ general position for this — to access much-needed funding and services and to generate greater public awareness, to name a few. Both TBIs and acquired brain injuries, such as anoxia, happen unexpectedly. But the trajectory of recovery may be much different. TBI survivors must also deal with the experience of trauma, such as that from a car crash or domestic violence. The proponents are right in a way — they might share overlapping symptoms such as memory impairment and chronic fatigue. But the telling tale is that all TBIs are acquired brain injuries, but not all acquired brain injuries are TBIs. We need to keep them separate in both legislation and research to better serve each population group.

Proponents arguing for this redefinition may have gone too far. We must retain the traditional understanding of TBI and keep the definition consistent with those across the field. For instance, the Centers for Disease Control and Prevention states that TBI is an injury that affects how the brain works. This injury may be caused by an external force, such as a blow to the head sustained from a motorcycle accident.

Combining traditional TBI survivors with patients sustaining non-traumatic acquired brain injuries will distort the study results in unpredictable ways and threaten their use for both groups. The outcome of any given study would depend entirely on the composition of the study sample. Some studies may include more non-traumatic acquired brain injury survivors than traditionally defined TBI survivors, while other studies may not even include a single TBI survivor. This is because, under the proposed redefinition, they are all now considered the same.

REDEFINING TRAUMATIC BRAIN INJURY SOUNDS COMPASSIONATE. IT’S ACTUALLY A DISASTER

This does more than just muddy the data. It can misinform clinicians and therapists on the best approaches to care and treatment. It can distort the views of patients and their families who may be looking for guidance on what they could expect. We cannot misattribute the challenges of recovery for one population group with another, even if they share common symptoms. At a societal level, if institutions and organizations begin to question the merits of scientific work, they could pause launching more long-term studies, according to Sten Vermund at Yale School of Public Health. All of these examples or reasons will lead us down the wrong path. The draft legislation, if left unamended, will waste taxpayer money on flawed science. This is one of many concerns that researchers work hard to guard against — compromising scientific standards in their work.

It is unlikely that the statutory definition applies only to the count of how many people live with a TBI, but not to the study of the long-term effects of one. The redefinition must be grounded. It must be applied across the board to all sections of the legislation — not selectively applied to whatever suits the proponents’ interests at a single moment in time. We cannot risk decades of progress on a faulty push to remake traumatic brain injury for expediency. We must demand a basic level of scientific integrity for the promises of the TBI reauthorization act to come true.

Brason Lee is a retired research scientist for the California Department of Public Health.

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[ H/T Washington Examiner ]