In 2013, the EAU established the Political Advocacy Committee. Our goal is to ensure that the interests of people with epilepsy are being addressed, present new laws (when needed) and carry our awareness and advocacy to a new level: Capitol Hill. We are looking for lobbyists and volunteers to assist with this effort. Anyone interested in participating should contact PAC@Epilepsyut.org.
In 2008, Utah was the 4th state in the Union to enact a prescription substitution bill tailored to the needs of people with epilepsy. The Association worked tirelessly with legislators to enact HB 361 which:
“Requires a pharmacist or pharmacy intern who substitutes a drug product equivalent for an epilepsy drug prescribed to a patient to treat or prevent seizures to notify the prescribing practitioner prior to the substation.”
In 2013 The EAU was the first epilepsy organization in the country to support legislation to legalize a form of cannabis extract for seizure control. Creating an affiliate: Hope 4 Children with Epilepsy, the EAU was able to share resources and work collaboratively with hundreds of people to support 2014’s HB105: Plant Extracts Amendments (Charlee’s Law). Signed into law on March 25th 2014, Charlee’s Law allows hundreds, possibly thousands of people in Utah to legally use a high-cbd/low-thc cannabis extract as a treatment for seizure management.
The HB105 effort also led to a pharmaceutical IND at the University of Utah, Primary Children’s Hospital for 25 selected patients. The IND medication, Epidiolex, is free of charge to participants.
The EAU has been advocating for a bill that would allow the delegation of seizure rescue medication to a qualified volunteer in a school setting in the absence of a nurse. In the State of Utah, school districts are allowed to refuse the administration of a rescue medication and in some districts there are policies in place that refuse to allow anyone to receive any rescue medication. The EAU feels this is arbitrary and dangerous considering the passage of 2008 HB101: AMENDMENTS TO EMERGENCY INJECTION FOR ANAPHYLACTIC REACTION ACT, which allows for the administration and delegation of epinephrine in an emergency situation.
The EAU is also meeting with members of the Department of Health, Utah State Office of Education, Utah School Nurses Association, Utah Nurses Association and Primary Children’s Hospital to standardize the management of care for student with seizures.