Legislation & Advocacy
You can be the difference.
The EFEPA is here to keep you up to date on 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 if you feel strongly about an issue. Make your voice heard.
Representative Scott Perry has introduced the Charlotte’s Web Medical Hemp Act of 2014 (H.R. 5226) to remove therapeutic hemp from the Controlled Substances Act. This would expand the availability of this treatment option, by allowing cannabis with less than .3% THC to be grown as therapeutic hemp and make extracting cannabidiol (CBD) oil legal at the federal level.
There is no “one size fits all” treatment for epilepsy, and about a third of people living with epilepsy suffer from uncontrolled or intractable seizures, with many more living with significant side-effects, despite available treatments. Uncontrolled seizures can lead to disability, injury, and even death. This is why people living with uncontrolled seizures turn to medical cannabis when all other options have failed.
Medical use of cannabis has been legalized in 23 states and the District of Columbia, and people living with uncontrolled seizures have reported beneficial effects and reduced seizure activity when using medical cannabis, especially CBD oil.
But people living with uncontrolled seizures and in states where medical cannabis is not legal, don’t have access to this promoting treatment options. Some families split up, and one parent moves to a state where medical cannabis is legal to gain access to CBD for their child. But this is not an option for most people living with epilepsy.
Nothing should stand in the way of patients gaining access to this potentially lifesaving treatment when all other options have failed.
Please urge your Representative to cosponsor H.R. 5226. Click Here to contact your Representative today.
Protect Access to Medications: Exclude Epilepsy Medications from the Prescription Drug Monitoring Program
The Pennsylvania Senate is considering a bill, SB 1180, which would expand the state’s Prescription Drug Monitoring Program to include Schedule V drugs, including anti-epilepsy drugs (AEDs). The House considered a bill to expand the prescription drug monitoring program this fall and amended the bill to exempt Schedule V AEDs to protect access to epilepsy treatments. We need the Senate to do the same!
Drug monitoring programs have been established in many states, including Pennsylvania, to address prescription drug abuse by closely monitoring and restricting access to medications with abuse potential). We are concerned that the proposed expansion will limit access to anti-epilepsy drugs (AEDs) and negatively impact the health and privacy of people living with epilepsy in Pennsylvania, by creating potential barriers to physician directed care and an unnecessary administrative burden that may jeopardize patient access and privacy. For people living with epilepsy, access to appropriate and effective epilepsy medications is critical for achieving and maintaining seizure control.
The Epilepsy Foundation Eastern Pennsylvania strongly believes that including Schedule V and AEDs in the monitoring program will endanger the health and privacy of epilepsy patients and have urged the legislature to amend the bill to exempt Schedule V drugs. The House supports the epilepsy community and has exempted Schedule V AEDs. It’s time for the Senate to act and we need your Senator’s help!
Contact your Senator today and ask him or her to support an amendment that exempts Schedule V AEDs from the proposed expansion of the prescription drug monitoring program in order to preserve and protect access to medications and privacy for individuals living with epilepsy in Pennsylvania.
Representatives Blumenauer, Griffith, Rohrabacher, and Schakowsky, are circulating a letter with their Congressional colleagues urging the Secretary of the Department of Health and Human Services (HHS) to remove barriers for medical marijuana research. Studies on marijuana must go through extensive review processes beyond what is required for other Schedule I substances, making it harder for research into the connection between seizures and marijuana to take place. If you support reducing the schedule medical marijuana so that more research into this potentially life changing medication can be explored, contact your representative today.
The House of Representatives is considering legislation that will encourage charitable giving by allowing individuals over the age of 70 to donate up to $100,000 directly from their IRA with tax benefits. This incentive has prompted more than $140 million in gifts to nonprofits since it was enacted in 2006.
These charitable gifts are vitally important for nonprofits like the EFEPA and allow us to provide services to thousands of individuals throughout the country. Please take a moment to urge your Representative to support this important tax incentive and help nonprofits who depend on these important contributions.
The Keeping All Students Safe Act (S. 2036, H.R. 1893) would protect all students nationwide from unnecessary restraint and seclusion. In 2009, a Government Accountability Office study found that children were injured, traumatized, and even killed through restraint and seclusion in schools. The Civil Rights Data Collection concluded that almost 40,000 students were physically restrained in the 2009-2010 school year, and that over 110,000 students were subjected to restraint and seclusion in 2011-12. It also found that students with disabilities experience restraint and seclusion at a higher rate than the rest of the student body.
S. 2036 and H.R. 1893 would limit the use of restraint and seclusion by banning the techniques, except in emergency situations where there is the danger of physical harm to someone. This includes mechanical and chemical restraints, as well as those that impede breathing. These are incredibly dangerous restraint methods, and present great concern for all students, and particularly those with epilepsy and seizures.
Additionally, both the House and Senate versions of the bill would require that parents be informed if their child was restrained or secluded on the same day the event occurred, allowing parents to be vigilant in looking for signs of concussions, internal injuries, trauma, as well as creating a positive environment for their children by working with the schools. The Keeping All Students Safe Act would promote a necessary shift towards positive behavioral interventions that, evidence shows, will keep students safe.
Click Take Action to contact your Members of Congress, and urge them to support S. 2036 and H.R. 1893 to protect students from unnecessary restraint and seclusion that lead to injury, trauma and even death.
Check back often to see our current legislative and advocacy priorities!