SR0535 103RD GENERAL ASSEMBLY

SR0535 LRB103 34837 ECR 64694 r

SENATE RESOLUTION

WHEREAS, Epilepsy Awareness is a nationwide effort to raise awareness about and change the conversation around epilepsy, seizures, and side effects as well as to improve and save lives through care, advocacy, research, new therapies, public health, and education; and

WHEREAS, Epilepsy is a brain disorder characterized by recurrent and unprovoked seizures that can affect anyone at any age at any time; and

WHEREAS, Epilepsy is also a spectrum disease comprised of many diagnoses and experiences and includes a wide range of seizure types, comorbidities, control, severity, and outcomes that vary from person-to-person; and

WHEREAS, Epilepsy is the fourth most common neurological disorder; approximately 3.4 million people in the United States live with active epilepsy, including 137,000 people in the State of Illinois; and

WHEREAS, In the U.S., approximately more than 324,000 Hispanic Americans and more than 578,000 Black, non-Hispanic Americans live with epilepsy, with latter more likely to be diagnosed with epilepsy over their lifetime due to a variety of factors, such as strokes and head injuries; for some people with epilepsy, disparities in care exist that lead to worse outcomes; for instance, individuals often experience significant delays in obtaining an appropriate diagnosis if they are American Indian, Alaskan Native, Asian, Pacific Islander, Native Hawaiian, or a member of other indigenous groups; and

WHEREAS, An increasing number of people are diagnosed with rare epilepsies which are largely complex, severe, chronic, and even life-threatening; collectively, rare epilepsies account for a growing percentage of the epilepsy population; and

WHEREAS, People with epilepsy need access to affordable, comprehensive, physician-directed, and person-centered healthcare; delays in accessing effective treatments increase the likelihood of breakthrough seizures and related complications, including injury, disability, or even Sudden Unexpected Death in Epilepsy (SUDEP); each year, it is thought that one in 1,000 people with epilepsy die from SUDEP, and this number increases drastically to one out of 150 for people whose epilepsy is not controlled by treatment; and

WHEREAS, Many treatments are approved to treat seizures, yet 30 to 40% of people with epilepsy still live with uncontrolled seizures, and epilepsy-related medical costs associated with uncontrolled epilepsy are two to ten times higher than those of controlled epilepsy; and

WHEREAS, In the last year, 21% of people with epilepsy have reported not being able to afford their prescription medications; and

WHEREAS, Non-medical drivers of health, such as social, economic, and environmental conditions including housing, employment, food security, transportation, and education, account for 80 to 90% of a person's health outcome; and

WHEREAS, Epilepsy and/or seizures impose an annual economic burden on healthcare of $54 billion; and

WHEREAS, In the U.S., 470,000 children live with epilepsy and 336,000 kids have at least one seizure annually; on average, students with epilepsy aged 6 to 17 years old have missed 11 or more days of school during the past year; and

WHEREAS, Protections exist for those with epilepsy in the Americans with Disabilities Act and related civil rights laws; despite these protections, people with epilepsy still encounter discrimination in a number of areas, including employment, education, and housing; therefore, be it

RESOLVED, BY THE SENATE OF THE ONE HUNDRED THIRD GENERAL ASSEMBLY OF THE STATE OF ILLINOIS, that we declare November 2023 as Epilepsy Awareness Month in the State of Illinois; and be it further

RESOLVED, That suitable copies of this resolution be presented to the Epilepsy Foundation of Chicago, the Epilepsy Foundation of Southern Illinois, the Danny Did Foundation, and CURE.