Brain Injury Community Pushes for Recognition of Brain Injury as a Chronic Health Condition

Every year, an estimated 2.8 million Americans sustain a traumatic brain injury, and more than 5 million people are living with a permanent brain injury-related disability – that’s one in 60 Americans. Yet, the long-term impacts of brain injury are not well known outside of the community.

The Brain Injury Association of America (BIAA) is calling for the Centers for Disease Control and Prevention and the Centers for Medicare and Medicaid Services to designate brain injury as a chronic condition, and that brain injury should be recognized, treated, and covered as such. BIAA has published an article Brain Injury: A Lifelong Journey that gathers the perspectives of survivors, caregivers, and medical professionals about what designating brain injury as a chronic condition would mean.

Research has shown time and time again that brain injury can evolve into a lifelong health condition that impairs the brain and other organ systems and may persist or progress over a person’s lifetime.

• Evidence suggests that functional outcomes after traumatic brain injury can show improvement or deterioration up to two decades post-injury, and rates of all-cause mortality remain elevated for many years.
• Chronic pain affects approximately 60 percent of people living with traumatic brain injury, even up to 30 years post-injury.
• About half of all people with traumatic brain injury are affected by depression within the first year after injury, and nearly two-thirds are affected within seven years after injury.

Additionally, the lived experience of TBI survivors supports these findings.

“There’s not much that’s familiar about my life since my injury,” says Stacia, a TBI survivor who sustained a brain injury after a bicycling accident in 2011. At the time of her injury, she was at a pivotal point in her teaching career, having taken on a new role in administration as the next step in her aspirations to run her own school. She was married with three children on the cusp of adulthood, had a robust social life, and was recovering well from back surgery two years prior. Her brain injury, and the lingering effects of it, changed everything.

Her story is not uncommon. TBI survivors often speak about their lives in two stages – the person they were before their injury, and the person they are post-injury.

“My life totally changed,” shares Angela, who sustained a severe TBI following a crash with an 18-wheeler in 2008. “There was an acceptance journey that happened, once I was able to accept that Angela One died on July 31, 2008, and Angela Two was born on that same night.”

There is a lack of understanding amongst the general public as well as within much of the medical field about the long-term effects and chronic nature of brain injury, particularly amongst those survivors living with invisible disabilities. But designating brain injury as a chronic health condition that can require lifelong management of symptoms would go a long way toward correcting misconceptions about a condition that impacts millions of Americans.