Legislative declaration

(1) The general assembly finds and declares that: (a) Epilepsy is a brain disorder that causes recurring and unprovoked seizures and affects people of all ages, impacting approximately three million adults and four hundred fifty-six thousand children in the United States; (b) Thirty percent of people with epilepsy live with uncontrolled seizures; (c) People with epilepsy have a three times higher risk of early death than the general population, and that risk is increased for those with uncontrolled seizures; (d) Sudden unexpected death in epilepsy claims the lives of one of every one thousand people living with epilepsy and one of every one hundred fifty people living with epilepsy and uncontrolled seizures; (e) Annually in the United States, more than six thousand people with epilepsy die from causes like sudden unexpected death in epilepsy, status epilepticus, unintentional injuries, and suicide. This statistic underestimates the number of deaths caused by epilepsy or sudden unexpected death in epilepsy due to poor recognition, incomplete death records, and misattributed causes of mortality. (f) Sudden unexpected death in epilepsy is the most common cause of premature epilepsy-related mortality; (g) Sudden unexpected death in epilepsy is the term used when someone with epilepsy dies without warning and no other cause of death can be found; (h) Risk counseling focused on all causes of epilepsy mortality, including sudden unexpected death in epilepsy, can help mitigate risk and prevent unnecessary deaths. Unfortunately, these services are often unavailable due to a lack of awareness and education and the absence of consistent reimbursement for post-diagnosis education and case management services. (i) It is the intent of the general assembly to help mitigate risk and prevent unnecessary deaths by increasing awareness and education concerning sudden unexpected death in epilepsy.