The Epilepsy Foundation Middle & West Tennessee makes great efforts to ensure that clients have information about local, state and national laws and pending legislation that affect them.
Patient Protection Act: Tennessee state law that went into effect July 1, 2007
For some people with epilepsy, identifying the right medication(s) and the specific dosage for good seizure control may take months or even years. Once control is established, any change or subtle difference in the medication can result in breakthrough seizures, with the potential for catastrophic results. EFMWT sponsored a resolution, which was passed by the Tennessee General Assembly on May 11, 2006, affirming the importance of public safety protection for people with epilepsy regarding uninformed substitution of their anti-epileptic medication. In 2007, the Patient Protection Act was introduced in the state legislature to further protect people with epilepsy. The act stated that a pharmacist may not interchange an anti-epileptic drug, brand or generic, or manufacturer for manufacturer, without first notifying the patient and prescribing physician. The bill passed the Senate unanimously and the House with only one dissenting vote. The act became law and went into effect July 1, 2007. Postcards outlining the law were sent to 1,606 pharmacies in Tennessee in June 2007. Our goal is to ensure that clients, pharmacies, and physicians are well-informed of the law during this next year. The Epilepsy Foundation is grateful to the bill’s sponsors, Representatives Lois DeBerry, Joanne Favors, Joe Armstrong and Gary Odom, and Senator Tim Burchett for their support of this important law.
Diastat Bill: Tennessee state law that went into effect July 1, 2008
Federal and state laws guarantee every child the right to participate in free, appropriate public education in the least restrictive setting, and provide for administration of medicine, as needed, to students with disabilities. The purpose of these laws is to ensure that children with chronic health conditions like epilepsy can receive education and participate in activities with their peers. When a child with epilepsy is susceptible to prolonged or cluster seizures that can cause serious injury and even death, his/her doctor may prescribe Diastat (rectally administered diazepam designed for use by non-medical caregivers) to be administered on an emergency basis. Unfortunately, in many Tennessee public schools, there are times when a school nurse is not available. The Diastat Bill proposed that in any school where a child with epilepsy has been prescribed Diastat, two volunteers may be trained to administer the Diastat in the event of an emergency when the school nurse is unavailable. The bill passed both houses unopposed. The Epilepsy Foundation is currently working with the Tennessee Departments of Education and Health to establish guidelines. The Epilepsy Foundation thanks Senators Bill Ketron, Beverly Marrero, and Jamie Woodson and Representative Mark Maddox for their sponsorship of this bill.
ADA Amendments Act of 2008: Federal law that went into effect January 1, 2009
On September 25, 2008, President Bush signed the ADA Amendments Act of 2008, which secures protections against workplace discrimination for every American with a disability. The bill marks a historic move toward securing the promise of the original Americans with Disabilities Act (ADA), signed into law in 1990. However, Supreme Court decisions over the past 18 years narrowed the definition of disability leaving thousands of people without civil rights protections in the workplace. The legislation clarified for the courts that people with disabilities should not lose civil rights protections because their condition is treatable with medication. The new law gives hope to the 45 million Americans living with disabilities, including the 3 million people with epilepsy. The Epilepsy Foundation Middle & West Tennessee thanks Senators Bob Corker and Lamar Alexander and Representatives Marsha Blackburn, Steve Cohen, Jim Cooper, David Davis, Lincoln Davis, John Duncan, Bart Gordon, John Tanner, and Zach Wamp for their support of the ADA Amendments of Act of 2008.
The staff of EFMWT strives to help our clients recognize their own strengths and to understand how they can become their own best advocate, including preparing our clients so that they have the confidence to speak for themselves. When a parent needs support at his/her child’s Individual Education Plan (IEP) meeting to discuss side effects of medication or the effect of uncontrolled seizures on their child’s education, EFMWT will accompany them. EFMWT encourages self-advocacy and currently sponsors three Support Training Exceptional Parents (STEP) workshops a year to prepare and assist parents in their efforts to obtain optimal educational services for their children. Furthermore, for a number of years, EFMWT has taken volunteers to the Epilepsy Foundation of America’s Public Policy Institute and Kids Speak Up! in Washington, D.C. to generate grass roots support.
If you have any questions about these bills or would like more information about how you can contact your legislators and express your support on pending legislation, please contact the Epilepsy Foundation at (615) 269-7091 or (800) 244-0768.