In the States
Epilepsy Foundation Advocacy Across the States
The Epilepsy Foundation recognizes that a great deal of the action in access to care for people with epilepsy is occurring at the state level States are facing critical budget shortages and cuts being proposed in Medicaid and other health care support programs that many people
Affiliates also work to build their state based advocacy programs, urging people to participate in the Speak Up Speak Out program. We want an active, involved voice for people with epilepsy in every state capitol. with epilepsy rely upon. The Epilepsy Foundation and its affiliates act in a variety of ways to protect access to necessary epilepsy services and supports.
We encourage you to join our Speak Up Speak Out network to follow national and state legislative activities to help protect programs that are vital to the health care needs of people with epilepsy.
Read a summary of advocacy across the states here
Governor Jay Inslee signs SHB 1541 into law
Emergency Medication Thank You
Thanks to the work of advocates and the tireless effort of the Epilepsy Foundation Northwest the epilepsy community has secured another great advocacy victory.On May 8, Gov. Jay Inslee signed a bill into law that allows for the administration of emergency medication in schools.The Washington State Legislature passed Substitute House Bill 1541, this legislation allows designated and trained employees who are not school nurses to administer necessary medication to students. The Epilepsy Foundation supported this bill because we know how critical access to emergency medication can be for safety and peace of mind in school settings. SHB 1541 includes requirement for simple safety training and it eliminates any criminal or civil liability in the event of student injury or death, provided that all instructions are followed. This is an important inclusion for school personnel.
It makes sense to provide for this accommodation in the school setting. For many students, it can be an emergency need for quick administration of a needed medication to avoid severe neurological and physical injury or even death. This vital need also speeds the recovery process so that the student may be back in class as soon as possible. Students should have access to medication while they are at school to maintain their roles in classrooms, educational activities, and all school functions. Participating in classroom activities and field trips are important to a well-rounded education, and a lack of simple laws and regulations should not stand in the way to equal access to the classroom for students.
SHB 1541 passed both houses of the legislature unanimously in March and April and is a great reflection of the important advocacy work the Epilepsy Foundation Northwest has been doing as well as the impact many of our epilepsy advocates have made by speaking up.
You can show your support for this legislative victory by taking action on the Epilepsy Foundation's page http://capwiz.com/efa/issues/alert/?alertid=62656981.
Prescription Drug Monitoring
Massachusetts is considering amendments to the Controlled Substances Act, which in its current form would establish a Prescription Monitoring Program (PMP) forcing doctors to consult this program before taking on a new patient. Programs like this are necessary and laudable in order to limit prescription drug abuse, but the inclusion of anti-epilepsy drugs (AEDs) is a real danger to those living with epilepsy. Such programs can cause interruptions in medication regimens as patients switch doctors or as young adults move on from pediatricians and children's hospitals. These breaks can be incredibly dangerous and even life threatening as a break in medication can bring about a series of seizures. AEDs and other Schedule V drugs should not be included in the PMP due to the low risk of abuse and addiction, and the Epilepsy Foundation has encouraged Massachusetts to exempt these drugs from PMP regulations. To read the Epilepsy Foundation's letter to the Massachusetts Department of Public Health click HERE.
The Texas legislature is considering creating a standard form for all prior approval requests for prescription medication made to health insurance providers in order to expedite the process and allow for a much simpler process. The Epilepsy Foundation wrote a testimony in support ofthis bill that you can read HERE. The Foundation supports policies that provide simple and expedited appeals process for inclusion and coverage of medications. In particular, any prior authorization process or requirements for coverage of physician directed care that is not on a formulary should be available, and information on how to appeal should be well publicized.
If you live in Texas, or have family and friends there, please take a moment to share this link to support this bill: http://capwiz.com/efa/issues/alert/?alertid=62442346
Maryland is considering two companion bills (HB1015 and SB746) that would limit how long patients can be made to follow step therapy procedures and would allow physicians to override the procedure entirely if they find it medically necessary.The Epilepsy Foundation supports this bill and has signed onto a letter written by the Maryland State Medical Society (MedChi) that expresses serious concerns about step therapy.To see the MedChi letter click HERE.
If you live in Maryland, or have family and friends there, please take a moment to share this link to support this bill: http://capwiz.com/efa/issues/alert/?alertid=62438021
The Arkansas legislature is considering a bill that would undermine the patient-physician relationship by allowing pharmacists to substitute a completely different medication without prior authorization of the physician. To permit these substitutions at the pharmacy counter undermines the treatment decisions made between patient and physician based on the patient's individual medical needs and life circumstances. HB 1185 would put the health of those with epilepsy at risk by allowing pharmacists to substitute a completely different medication in a drug class without physician approval. Many epilepsy patients must take multiple medications to keep their symptoms under control, and the balancing of these prescriptions takes an intimate knowledge of the patient and the interactions between all of the active ingredients. Allowing these substitutions without the input of the patient's physician could seriously endanger the life of a person living with epilepsy.
If you live in Arkansas, or have family and friends there, please take a moment today to share this link to oppose this bill: http://capwiz.com/efa/issues/alert/?alertid=62428301
Sudden Unexpected Death in Epilepsy
Advocates in New Jersey and the Epilepsy Foundation are working to support training for medical examiners about sudden unexpected death in epilepsy (SUDEP) and encouraging the medical information and the brain donation of the deceased for further research about SUDEP. SUDEP is the most common cause of epilepsy-related death.SUDEP may be underreported for many reasons, including unawareness among medical examiners and those filling out death certificates, coupled with the misconception that seizures cannot have fatal consequences. With better data on those who die and identification of risk factors for SUDEP, progress can be made to diminish the danger of SUDEP.
Join the Epilepsy Foundation in asking New Jersey to help promote awareness, education and prevention of SUDEP. Read more here: http://capwiz.com/efa/issues/bills/?bill=62407226