SUDEP Legislation in Illinois: A milestone in Epilepsy support, Awareness and Research.

Following New Jersey, Illinois is only the second state to pass into law, required SUDEP (Sudden and unexpected death in epilepsy) reports.

The Illinois SUDEP Act took effect January 1, 2014. The Act was inspired by Danny Stanton (Danny Did Foundation). We want to thank the efforts of Illinois State Senator Dan Kotowski, who was a staunch supporter in the passage of the act into law.

The act is named after Danny Stanton, who died from SUDEP in December, 2009, shortly before his fifth birthday. At the time of his death and before the passage of the Act, there was no state level or federal level act to document cases of SUDEP. Therefore there was not enough information including causes, incidence and risk factors to deal with SUDEP effectively.

SUDEP accounts for about 17 percent of deaths in epilepsy. The figure is higher among children.  It is estimated that it is as high as 30% in children with epilepsy.  According to recent research the risk of sudden death in epilepsy is sixteen times higher than in the general population. As such there was the need to take an in-depth look as to why this occurs and to take preventive measures. The Illinois SUDEP law is expected to serve as a national model in the fight against sudden and unexpected deaths in epilepsy.

Before the law was passed in August, 2013, there were not much substantial state level or federal level tools in researching issues of epilepsy and SUDEP. The Illinois law will help document evidences as well as incidences of SUDEP. The law is also expected to create more awareness in epilepsy and the debilitating effects of SUDEP.

Even though more efforts need to be done, the passage into law indicates the seriousness of the situation and need to curtail the incidence of SUDEP including prevention and the treatment of epilepsy in general. The New Jersey and the Illinois SUDEP law show that states are now taking a critical look at mitigating SUDEP and Epilepsy.

SUDEP is defined as “sudden, unexpected, witnessed or unwitnessed, non-traumatic and non-drowning death, occurring in benign circumstances, in an individual with epilepsy, with or without evidence for a seizure and excluding documented status epilepticus” The SUDEP law therefore requires all autopsies to rule out alternative causes of death in people with epilepsy to create a definite SUDEP data base.

The Act mandates medical examiners and coroners to include an inquiry into autopsies to determine if the death was a direct result of a seizure or epilepsy. According to the law, if the findings in an autopsy of a medical examiner, examining physician, or coroner are consistent with known or suspected sudden, unexpected death in epilepsy (SUDEP), then he or she shall indicate SUDEP as the cause of death in the person’s death certificate.

The law also mandates the examiner to forward a copy of the death certificate to the North American SUDEP Registry within 30 days.

You can read about the new Illinois SUDEP law by clicking on the following link: http://www.ilga.gov/legislation/publicacts/fulltext.asp?Name=098-0340