Redefining traumatic brain injury sounds compassionate. It’s actually a disaster

As the Senate considers Bill 2898 (the Dennis John Benigno Traumatic Brain Injury Program Reauthorization Act), brain injury advocacy faces a critical inflection point. As a 64-year-old elder statesman of pediatric traumatic brain injury, I see growing tensions that can harm all survivors. The most consequential one is the dilution of TBI as we now know it.The TBI community does not make up one voice. We make up many voices, punctuated by the spectrum of severity levels, the scope of access to care, and many other factors.SB 2898 breaks from the traditions of prior reauthorization efforts, in part by broadening the statutory definition of traumatic brain injury to include brain damage caused by infection, surgery, or toxicity. While this might sound compassionate, this expansion actually hurts all TBI survivors in the long run. It changes the scope of who will be covered and inflates the numbers of those with TBI by weakening its meaning. Under this proposed change, TBI will no longer be seen as an injury that is caused by an outside force, a forceful bump, blow, or jolt to the head or body. TBI will now include stroke, anoxia, infection, toxicity, surgery, and vascular disorders. The expanded definition could artificially increase the number of TBI survivors from 6.4 million to 10.4 million and, as a result, balloon federal funding from roughly $25 million to about $40 million.Survivors under a more traditional understanding of TBI will lose their main legislative hand as a way to improve access to care. There is no figure for the average time survivors can wait for rehabilitation care. It can take as short as a week or as long as several months, influenced in part by factors ranging from bed availability to insurance reauthorization and injury severity. A statutory increase in the number of persons with TBI will likely create a bottleneck in those seeking rehabilitation and increase the chance of a worsening outcome for survivors if the timing of rehabilitation care is, in fact, a crucial factor to recovery.We do not need to expand the statutory definition of TBI. We need to do better in reaching out to survivors who are underserved and left behind.Why extend services if we, in the field of brain injury, have not resolved the existing disparities in care among those with actual traumatic brain injuries? What about survivors living in rural areas? Or those from socially or economically disadvantaged communities? Let me say this more directly: What about survivors from ethnically and culturally diverse communities and those from lower-income households? Where are they? We cannot leave them behind in a rush to broaden the mandate that is, at best, only partially realized for a segment of its targeted population.NOVO NORDISK SUED OVER WEIGHT-LOSS DRUG SPIN. NOW IT’S DOING THE EXACT SAME THINGWe don’t need to expand the statutory definition to elevate the importance of TBI. The last thing survivors need is to have advocates push for something that will hand health insurance companies the precise reason why they should deny our claims — that we are somehow exaggerating our symptoms.Using semantics to inflate the number or seriousness of TBI will backfire. To better serve brain injury survivors, Congress must keep S. 2898 focused on its original purpose: to reduce the incidence of TBI and to improve access to TBI health services.Brason Lee is a retired research scientist for the California Department of Public Health.