You can be the difference.
The EFEPA is here to keep you up-to-date on the legislative efforts that have a potential impact on the lives of those with epilepsy. You can help us create a safer and more understanding community by taking action and contacting your representatives, and make your voice heard.
The Epilepsy Foundations of Pennsylvania are the only organizations providing dedicated education and training programs about epilepsy and seizure disorders in PA. The FY 2018-19 budget includes a statewide appropriation of $550,000 for epilepsy support services. This allocation is shared between the Epilepsy Foundation Eastern PA and the Epilepsy Foundation Western/Central PA. Specifically, these funds from the PA Department of Health support programs that educate schools and first responders on epilepsy awareness and seizure first-aid. These initiatives are essential to making our state safe. There are over 200,000 individuals, including nearly 19,000 school aged children, living with epilepsy in PA.
Life with epilepsy poses a unique set of challenges that affect individuals across all walks of life. From parents who don’t know where to turn for answers about diagnosis, treatment and struggles with school, to adults who need help finding health insurance or working out accommodations on the job, first responders and law enforcement treating seizures in the community, and teachers who need to know more about how to help children—the EFEPA is there for guidance, support, and services. Consider the following statistics on the prevalence and impact of epilepsy:
- 1 in 26 individuals will be diagnosed with epilepsy at some point in their lifetime.
- 1 in 1,000 with seizures will die from SUDEP (Sudden Unexplained Death in Epilepsy) each year.
- The total annual indirect and direct cost of epilepsy in the United States is estimated to be $15.5 billion.
We need your help! Each year the allocation for Epilepsy Support Services is reviewed by our legislators. They emphasize the importance of hearing directly from constituents how our services have impacted their lives. Please contact your legislators about the importance of these services to the physical and emotional safety of Pennsylvanians living with epilepsy.
In Pennsylvania, the Achieving Better Care by Monitoring All Prescriptions (ABC-MAP) Act allows the state to monitor prescription drugs in Schedules II – V. While ABC-MAP has protected Pennsylvanians from potentially addictive medications in Schedules II – IV, the law has also created access barriers for non-narcotic, non-opioid epilepsy medications in Schedule V.
The Epilepsy Foundation and the Epilepsy Foundations of Pennsylvania strongly support exempting Schedule V non-opioid medications (which include epilepsy medications) from ABC-MAP requirements. Prescription drug monitoring programs like ABC-MAP are designed to help reduce prescription drug abuse, particularly of opioid drugs. The Epilepsy Foundation is not aware of any research to suggest people with epilepsy abuse their epilepsy medications. However, we do know firsthand the dramatic consequences of delaying or restricting access to epilepsy medications — which include breakthrough seizures, medical complications and expenses, and even death.
Exempting Schedule V non-opioid medications is a simple way to ensure timely access to physician directed care while still addressing prescription drug abuse via the monitoring program.
Senator Gene Yaw has written a memorandum to all members of the PA Senate regarding his support for exempting epilepsy medications from the state’s prescription drug monitoring program. In spring 2017, Senator Yaw introduced Senate Bill 728, a bill that would exempt non-narcotic, non-opioid epilepsy medications from the query requirements in ABC-MAP.
UPDATE 12/22/2017: Governor Wolf signs Yaw Epilepsy Exclusion Bill
During the 2017 state and federal legislative sessions, the Epilepsy Foundation has closely monitored and advocated for legislation designed to increase access to medical cannabis and cannabidiol (CBD) for people with epilepsy. We continue to support lifting federal barriers to research on cannabis and CBD and support access to these potential therapies, through state-regulated programs, for individuals when other treatment options have failed.
In Congress, the Epilepsy Foundation supports:
- The CARERS Act (S. 1374), a bill which would protect patients and physicians in states with medical cannabis programs and remove federal barriers to cannabis research.
- The Compassionate Access Act (H.R. 715), a bill that would provide for the medical use of cannabis in accordance with state law, and exclude cannabidiol from the federal legal definition of marijuana.
- The Therapeutic Hemp Medical Access Act (S. 1008), which amends the Controlled Substances Act to exclude cannabidiol and cannabidiol-rich plants from the definition of marijuana, as well as the similar Charlotte’s Web Medical Access Act (H.R. 2273).
- The Cannabidiol Research Expansion Act (S. 1276), which would require the Attorney General to determine whether cannabidiol should be a controlled substance, and to expand research on the possible medical benefits of cannabidiol and other marijuana components.
Even if you don’t want to speak out about a specific issue, educating those around you about epilepsy is an empowering form of advocacy. A letter to your local newspaper editor is a great way to gain media exposure for National Epilepsy Awareness Month! If you have a personal connection to epilepsy, meaning either you or a loved one has epilepsy, sharing your experiences in a letter is a great way to educate others about how seizures can impact someone’s life.
Find contact information for your local media outlets at: http://capwiz.com/efa/dbq/media/.
Additional information is available at advocacy.epilepys.com/Pennsylvania. Check back often to see our current legislative and advocacy priorities!