SUDEP legislative initiatives in the US: 2 case studies
[Part 1: Facts; Stanton TF & Stevenson MJ]
SUDEP awareness and advocacy has gained considerable ground in the United States (US) over the past three years. However a missing link in America has been the medical examiner/coroner community. Without proper identification and classification of SUDEP cases, the medical community can only anecdotally determine the impact and health burden that SUDEP places on society. In the US, four States - New Jersey, Illinois, Colorado and New York - have pursued legislation to require mandatory reporting of epilepsy related deaths by medical examiners and coroners, and the required use of the recently created North American SUDEP Registry (NASR). In three states it has been families impacted by SUDEP that have spearheaded the action. At this point, the campaigns in Illinois and New Jersey have been successful, and the Colorado legislation did not pass. Illinois and Colorado case studies provide valuable insights into this process.
The Illinois Experience
In January 2013, Illinois State Senator Dan Kotowski introduced Senate Bill 1226, or the ‘Danny Stanton SUDEP Act’. The purpose was to mandate the reporting of SUDEP cases to NASR. Senator Kotowski, a person with epilepsy and a board member of the Danny Did Foundation (a Chicago-based advocacy organization focused on SUDEP awareness), drafted the legislation as a means to formalize data collection behind SUDEP cases, an endeavor directly connected to the medical examiner or coroner handling of the death. Accurately counting the number of SUDEP deaths in Illinois, or any jurisdiction is critical in calculating the public health impact of SUDEP, and in galvanizing campaigns for funding research and education.
The Illinois Bill addressed three outcomes: 1) that all autopsies conducted in Illinois include an inquiry to determine whether the death was a direct result of a seizure or epilepsy, 2) that if a case of SUDEP is found, the medical examiner, examining physician, or coroner shall indicate SUDEP as the cause of death on the death certificate and forward a copy to NASR within 30 days, and 3) that medical examiners and coroners in all 103 Illinois counties be trained and educated to detect cases of SUDEP. Central to success of this effort was early outreach and collaboration with the Illinois Coroners and Medical Examiners Association (ICMEA). Some initial opposition was relieved once the leadership of ICMEA realized that they would be integral to finalizing the Bill’s language and execution. Also beneficial was the combination of a respected public official in Senator Kotowski working in unison with advocacy organizations that are well respected in the community.
The Bill defined SUDEP as ‘a death in a patient previously diagnosed with epilepsy that is not due to trauma, drowning, status epilepticus, or other known causes, but for which there is often evidence of an associated seizure’. The most significant concern related to the Bill was its cost, a common theme in jurisdictions where government budgets are limited. To alleviate this concern, the Bill’s original requirement to fund the training and education of coroners and medical examiners was dropped. The rationale was to pass a streamlined edition of the Bill that still achieved major goals, with the intent to add the training and education components later. This effort took more than six months of meeting with politicians, testifying before panels, and explaining the impact of epilepsy and SUDEP. After passing through both chambers of the Illinois Congress, the resolution was signed by the Illinois Governor in August 2013. Its implementation was effective January 1, 2014. One subsequent challenge has been tracking the outcomes of the new law; how many ME’s/coroner’s know about it, and how much, if at all, has it increased SUDEP reporting? We’re learning that implementation and follow up are nearly as important to the process as passage.
The Colorado Experience
SUDEP legislation was initiated in February 2013 by the colleague of a father who lost his son to SUDEP. The colleague was participating in a legislative fellowship in the Senate and heard about the New Jersey legislation. She approached the Epilepsy Foundation of Colorado (EFCO) Executive Director and an EFCO Board member who lost his son to SUDEP. The Colorado Legislature is considered a ‘part-time’ legislative body that is only in session from January to April each year. The following week EFCO members visited the State Capital and found a Representative (a physician) to sponsor the Bill. Since the legislature was more than 30 days in session, members obtained approval from the Speaker of the House and President of the Senate to submit a late Bill. A Senator (also a physician) was brought onboard to co-sponsor the Bill. Colorado House Bill 13-1256 ‘The Sudden Unexpected Death in Epilepsy Reporting Requirement Act of 2013’ was drafted. Members of the Colorado Coroners Association (CCA) received notice of the pending Bill and hired lobbyists to challenge it. Colorado has a mostly elected medical examiner and coroner system in each of its 64 counties. There is no medical background required to be elected as a county coroner. Most medical examiners (MEs) are physicians including forensic pathologists, but MEs only serve in larger cities and counties.
The Representative co-sponsoring the Bill held a meeting with the EFCO organizers, representatives from CCA and a representative from the State health department. The CCA presented several arguments against the Bill including: 1) the Bill was meant to dismantle the coroner system in Colorado, 2) the Bill would bring financial burden upon counties, 3) if anyone with epilepsy died in a car accident from cancer, or another condition/event, the Bill would require SUDEP be placed on the death certificate, 4) it was not appropriate for the MEs/coroners to approach families about donating tissue to the NASR, this should be done by the patient’s physician/ neurologist prior to the death, 5) MEs/ coroners would get sued for removing the brain, or tissue from the deceased, and 6) the new requirement and short time-frame to extract the brain and tissue and send to NASR would require that MEs/coroners be on call 24-7-365. EFCO countered CCA’s arguments, but in the end the Representative decided to retract the Bill. A compromise was reached where CCA would allow a SUDEP presentation at their annual conference. In June 2014, an international expert on SUDEP along with several parents bereaved by SUDEP presented at the CCA conference.
Lessons learned from the Illinois and Colorado actions include 1) don’t rush a Bill thorough the legislative session; be prepared well in advance, 2) include the State ME/coroner association and State health department early in the process to get their buy-in, and 3) establish relationships with the House/Senate members early in the process to better prepare them for potential conflicts. These legislative campaigns began as a grass roots effort by those personally touched by SUDEP. The aim is to ensure that the epilepsy mortality data is accurately captured and a strong case is made for federal funding of SUDEP research and prevention.
Thomas F Stanton, Danny Did Foundation, USA
Mark J Stevenson, USA
Reviewed Apr 2018; Original Dec 2014
Since this article first published in 2014, a new state in the USA - New York - passed a law in 2017 that is similar to the legislation in Illinois. New Yor became the third state joining Illinois and New Jersey, to have SUDEP-related legislation. The New York effort was led by Jeanne Donalty , who lost her 21 year old son Christopher to SUDEP in 2002.
How to cite:
Stanton TF & Stevenson MJ. SUDEP legislative initiatives in the US: 2 case studies. In: Panelli R, Hanna J, Jeffs T, Brockett P, editors. Continuing the global conversation [online]. SUDEP Action & SUDEP Aware; 2018 [retrieved day/month/year]. Available from: www.sudepglobalconversation.com.