Traumatic Brain Injury (TBI) represents a massive underserved personal and economic burden in the United States, with an estimated $80 billion in lifetime costs alone. According to the Centers for Disease Control and Prevention (CDC), from 2006-2014, the number of TBI-related emergency department visits, hospitalizations and deaths increased by 53% to 2.87 million, of which more than 837,000 events were among children.
TBI disproportionately affects vulnerable populations, particularly military service personnel, at an alarming rate. According toDefense and Veterans Brain Injury Center, from 2000-2019, more than 413,858 service members have been diagnosed with TBI with more than 15,000 cases of mixed severities in 2019 on its own. Recent news reports indicated more than 100 U.S. soldiers are suffering brain trauma after Iran’s missile strike on Al Asad Air Base in Western Iraq.
TBI is often caused by a bump, blow or jolt to the head that disrupts normal function of the brain. According to the CDC, injuries related to blasts, objects hitting head and falls commonly occur to those in the military.
Severity of TBI can be mild and temporary, or severe and life-altering, presenting patients with many complications and comorbidities. Those affected often suffer from a cascade of life-altering health conditions, including movement and sensation, anxiety/depression, epilepsy, sleep deprivation, personality changes, alcohol or opioid abuse and memory loss. Among veterans with positive TBI screens in VA facilities, 80% indicate comorbid psychiatric diagnoses.
Healthcare System Difficult to Navigate
Upon diagnosis, individuals with TBI transition through many stages, from acute patient in the hospital, to long-term care in medical intervention and rehabilitation. Long-term care can range from weeks up to 20+ years of ongoing symptom management. During this time, individuals living with TBI require a wide array of medicine, including high use of anticonvulsants, opioids and muscle relaxants to antidepressants, antipsychotics and sleep medications.
To better address this staggering public health issue, the Department of Health and Human Services (HHS) must create a National TBI Registry to assist with prevention, surveillance, and to help develop a standardized level of care for individuals living with TBI. The current tracking system, which is decentralized and relies on states and regions to construct their own registries, is inadequate and leaves millions without resources to manage their TBI comorbidities.
Nationwide Centralized Registry Needed
A centralized comprehensive registry would collect data on individuals with TBI in the U.S. and include pertinent information like how they obtained a TBI, how they were treated, outcomes and long-term effects. This type of information would facilitate more – and better – prevention development, surveillance/tracking, and development of clinical trials for new innovative approaches to advance treatment options. It also would serve as a resource for individuals with brain injury and caregivers to better navigate the healthcare system for support. Ultimately, the goal is to find a cure, but in the meantime, there is progress to be made.
There is currently an experimental stem cell therapy in clinical trials that aims to treat paralysis, uncontrolled movements and other motor deficits that often accompany TBI. It is exactly this kind of research that should be accessible to everyone affected by motor deficits after brain injury.
I’m pleased to share that there was a Brain Injury Task Force Congressional Hearing on Capitol Hill this March, where Reps. Bill Pascrell Jr. (D-N.J.) and Don Bacon (R-Neb.) showed their support for one centralized TBI Registry. This proves the leaps and bounds we’re already making in the TBI space to improve care and ultimately save individuals with TBI from overspending on treatment options for their comorbid condition. TBIs are an epidemic amongst our service members and veterans, which deserve first-in-class care and treatment options – yet our current processes and infrastructure are falling short by a long shot when it comes to TBI knowledge and resource-sharing nationwide.
Written By: Stephanie A. Kolakowsky-Hayner, PhD, CBIST, FACRM; National TBI RegistryCoalition (or President Elect, American Congress of Rehabilitation Medicine)