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 with epilepsy rely upon.
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. 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
State Laws and Regulations
Click on the links below for information regarding state laws and regulations that are important to the epilepsy community.
- National Conference of State Legislatures Resource on Medicaid Prescription Drug Laws
- A list of general laws regarding Medicaid
- National Conference of State Legislatures Resource on Epilepsy Drug Substitution Laws and Legislation
- A list of states restricting epilepsy drugs from being switched at the pharmacy as well as legislation that has been proposed in the past.
- National Conference of State Legislatures Resource on Prescription Drug Information
- Information and resources for prescription drug processes and laws.
- Centers for Disease Control and Prevention Map on Prescription Drug Supply Limits
- A map of state laws on the limits for how many days supply of drugs you can get at any one time.
- Centers for Disease Control and Prevention Map on Prescription Drug Laws
- A map of state laws on prescription drugs covering a variety of drug laws.
The California legislature is considering legislation (AB 1917) that would limit cost-sharing in state commercial health insurance plans, including plans sold in the state’s Health Insurance Marketplace. For persons living with chronic conditions, like epilepsy, this would improve access to lifesaving medications by making them more affordable. At the August 5th Senate Appropriations Committee hearing on AB 1917 the committee heard testimony from an epilepsy advocate who has struggled to maintain access to the medication his physician recommends. The bill passed out of committee, and we need your help to get it through the full Senate and to the Governor’s desk. If you live in California, please ask your Senator to support AB 1917 at http://bit.ly/AB1917.
The Epilepsy Foundation of Greater Los Angeles' Big Brain Exhibit "Love Your Brain Now" on the lawn in front of the State Capitol helped to increase awareness about epilepsy.
On June 16th Ohio’s Governor John Kasich signed into law legislation that will exempt Schedule V drugs, including many anti-epilepsy drugs (AEDs), from the state’s prescription drug monitoring program (HB 483). The Epilepsy Foundation urged the Ohio legislature to exempt Schedule V drugs from the monitoring program. The inclusion of Schedule V drugs in the monitoring program caused unnecessary delays and prevented timely access to physician-directed care. HB 483 removes unnecessary barriers to care for people living with epilepsy and other conditions treated by Schedule V medications. Read our letter to the Ohio legislature at http://bit.ly/OHExempt.
The Epilepsy Foundation of Eastern Pennsylvania and the Epilepsy Foundation of Western/Central Pennsylvania are advocating to preserve state funding for epilepsy services like Project School Alert, training for school nurses and teachers, patient education conferences, local support groups, and first responder training. Without state funding, these programs face cuts that would severely impact the epilepsy community of Pennsylvania. Currently, the state budget includes funding for epilepsy programs in the Department of Health budget, but that funding may be in jeopardy as the state government deals with revenue shortfalls. If you live in Pennsylvania please take a moment to contact your legislators and urge them to support the funding for epilepsy programs at http://bit.ly/EFPAFunding.
Prescription Drug Monitoring Program
The Pennsylvania Senate recently passed legislation (SB 1180) which would expand the state’s prescription drug monitoring program to include Schedule V drugs and create an additional reporting burden for physicians who prescribe Schedule V drugs. These changes would cause unnecessary delays and prevent timely access to physician-directed care. We are urging the legislature to amend SB 1180 to include an exemption for Schedule V anti-epilepsy drugs (AEDs) similar to the one championed by Representative Adolph in the House version of the bill (HB 1694). The reporting burden will negatively impact access to epilepsy care if physicians are reluctant to see epilepsy patients or to prescribe AEDs due to the burden of reporting and checking the database. Read our letter to Representative Adolph at http://bit.ly/SB1180Adolph.
Iowa Governor Terry Branstad signed into law legislation (HF 2463) which increases funding for the Epilepsy Foundation of North/Central Illinois, Iowa, and Nebraska so they can expand their services into the eastern portion of Iowa. The increased funding will support training for first responders, medical professionals, and school personnel, as well as support and education programs for people living with epilepsy.
HF 2463 also funded the Home and Community Bases Services (HCBS) waiver program to allow those living with disabilities to receive services in their home and community. These programs are especially important for individuals living with uncontrolled or intractable epilepsy who cannot drive and experience many transportation and mobility challenges. Read our letter to the Governor in support of HF 2463 at http://bit.ly/EFHF2463.
The EF Affiliates in Pennsylvania host an annual legislative breakfast in the capitol rotunda each year to educate members of the PA General Assembly and urge them to continue funding epilepsy programs in the state budget. On Tuesday, March 11,2014 Board members, staff, youth leaders and families gathered in the East Wing Rotunda of the Pennsylvania Capitol Building wearing buttons that proudly proclaimed either “I am 1 in 26” or “I love 1 in 26” to host a continental breakfast. Over 40 House and Senate members stopped by to learn more about the programs supported through the line item in Pennsylvania’s state budget that funds epilepsy programs. Most prominent among those attending was longtime Pennsylvania epilepsy advocate and Chairman of the House Appropriations Committee, Representative Bill Adolph from the Philadelphia area. House Majority Leader Mike Turzai, who represents a district outside of Pittsburgh, also stopped by briefly to say hello and offer his help. Members from nearly every region of the state were present and all of those in attendance were supportive and offered to support funding for epilepsy programs.
Following the breakfast, advocates from both the Epilepsy Foundation Eastern PA and the Epilepsy Foundation Western/Central Pennsylvania met with leadership from both sides of the aisles in both the House and Senate from the Appropriations Committees to stress the need to continue funding for epilepsy services. The current state budget includes $550,000 in state funding for epilepsy programs.
Advocates also took the time to visit each and every one of the 253 offices of the Pennsylvania General Assembly, both the House and Senate. Each office received a message card about epilepsy in Pennsylvania and a summary of the Epilepsy Foundation’s request for funding in Pennsylvania. Each card outlining our request also included a set of purple “ear buds” attached to a quote from Woodrow Wilson, “The ear of the leader must ring with the voices of the people.” And, a reminder that 1 in 26 Pennsylvanians will have epilepsy at some point in their lifetime.
By law, Pennsylvania must pass a state budget by June 30, 2014. Pennsylvania advocates are hopeful that the final state budget will included continued funding for epilepsy programs.
Drug Monitoring Program Expansion
The Pennsylvania Senate is considering a bill (SB 1180) that would expand the state's prescription drug monitoring program (PDMP) to include all Schedule V drugs, including anti-epilepsy drugs (AEDs). The Epilepsy Foundation is concerned that including AEDs in the PDMP will lead to delays in access to epilepsy medication due to onerous monitoring requirements. The House passed a similar expansion bill that included an amendment to exclude Schedule V epilepsy medications from the monitoring program and we need your help to secure a similar amendment in the Senate.
If you live in Pennsylvania ask you Senators to exempt all Schedule V AEDs from the monitoring requirements at http://bit.ly/PASB1180.
On March 4th more than 65 advocates from across the state participated in the Epilepsy Foundation of Minnesota’s advocacy day in St. Paul. Advocates raised awareness about the challenges of living with epilepsy and urged the legislature to promote improved access to medical care, support programs to end discrimination and stigma, and Sudden Unexpected Death in Epilepsy (SUDEP) education.
The Iowa Senate is considering a Human Services Appropriations bill (HF 2436) which includes language that would standardize the prior authorization process and require insurance companies to respond to all prior authorization requests within 72 hours to improve access to care and health outcomes for Iowa residents living with epilepsy and other chronic conditions. The inclusion of this language comes on the heels of, a Prior Authorization Reform bill (HF 2376), which passed the House with overwhelming support but stalled in the Senate. The Iowa legislature will adjourn for the year soon and we need your help.
If you live in Iowa ask your Senators to ensure people living with chronic conditions, including epilepsy, have access to medications in a safe and timely manner at http://bit.ly/IAHF2436.
Both chambers of the Maryland legislature passed a bill (SB 622) that would limit step therapy and “fail first” policies before adjourning for the year. The bill is awaiting the Governor’s signature. Step therapy can unnecessarily prolong ineffective treatment and limit access to appropriate medications for people with epilepsy jeopardizing seizure control and quality of life for people living with epilepsy.
Last month Governor Maggie Hassan signed a bill that expanded Medicaid to provide health insurance to an estimated 50,000 low-income adults in a 2 and a half year pilot program that will pay private health insurers with federal Medicaid money. New Hampshire estimates that 12,000 adults could receive coverage within the next month through an existing program to subsidize employer-based coverage, while 38,000 adults would receive coverage through New Hampshire’s Medicaid managed care program starting on or shortly after July 1st.
Medical Marijuana Legislation in the States
There has been a lot of movement in the states surrounding medical marijuana and cannabidiol (CBD) oil legislation. Below is an update on bills that have been signed into law, have passed the legislature and are awaiting the Governor’s signature, or are still being debated.
Kentucky passed a bill (SB 124) that will allow doctors at two university research hospitals to prescribe CBD oil. On April 10th the Governor signed the bill into law.
Utah passed a bill (HB 105) that will allow families to posses CBD oil so long as they have a state issued card. On March 20th the Governor signed the bill into law.
The Mississippi legislature overwhelmingly supported a bill (HB 1231) that would allow patients with epilepsy to access CBD oil from the University of Mississippi. The Governor has voiced concerns over legalizing medical marijuana, but we remain hopeful he will sign the bill.
The Illinois House is considering legislation that recently cleared the Senate (SB 2636) that would add CBD oil to the state’s medical marijuana program and allow patients under the age of 18 to access CBD oil (currently the medical marijuana program is limited individuals 18 and older, and epilepsy is not listed debilitating condition).
The Wisconsin legislature is considering a bill (AB 726) that would allow individuals living with uncontrolled or intractable seizures to use CBD oil. If you live in Wisconsin ask the Governor and your Senator to support the bill at http://bit.ly/EFWIAB726.
Maryland passed medical marijuana bills (HB 881 and SB 923) that amend their current medical marijuana program, which hasn’t been fully implemented. The new program would allow licensed growers to provide marijuana to dispensaries, similar to many other programs throughout the country. On April 14th the Governor signed the bill into law.
The Louisiana legislature recently introduced a bill (SB 541) that would create a medical marijuana program in the state. The Epilepsy Foundation of Louisiana is advocating for expanding the program to include access for children with epilepsy and to explicitly include CBD oil. As currently written, SB 541 restricts access to medical marijuana to individuals 21 and older. If you live in Louisiana, ask your State Senator to support the bill at http://bit.ly/SB541LA.
The Colorado legislature is considering a bill (HB 14-1068) that would require a physician to report if a patient has epilepsy and seizures, so the state can immediately revoke the individual's driver's license. The proposal endangers the confidential nature of the relationship between patients and their physicians, and would lead epilepsy patients to withhold information from their physicians or even forgo medical care. It also reflects a poor understanding of epilepsy by the authors of the legislation. If you or someone you know lives in Colorado, please click HERE to send a letter to your local Representatives and urge them to oppose HB 14-1068.
(Lieutenant Governor Ralph Northam, back center, surrounded by contest winners and Virginia Representatives)
On January 14th, the Virginia state legislators gathered for the annual Use a Helmet Prevent Epilepsy campaign awards breakfast to congratulated students from across the state who designed the winning posters for the awareness campaign. The event, organized by the Epilepsy Foundation of Virginia, was held at the General Assembly Building in Richmond. Virginia's Lieutenant Governor Ralph Northam, a pediatric neurologist, addressed the families and teachers in attendance.
The Ohio legislature held a hearing today to consider changes to the state's monitoring program, which currently monitors Schedule V anti-epilepsy drugs (AEDs) and restricts samples provided by physicians. This endangers the health of epilepsy patients by creating unnecessary barriers to physician directed care, which is critical for achieving and maintaining seizure control. The Epilepsy Foundation and the two Ohio affiliates wrote a letter to State Representative Smith urging him to amend HB 341 to exempt AEDs from the prescription drug monitoring program and from sampling limits. To see the letter, click HERE.
If you're an Ohio resident please contact your Representative today and ask them to exempt Schedule V drugs or, at a minimum, AEDs from the monitoring program, and to lift restrictions on samples provided by physicians. This exemption will improve and protect access to medications for individuals living with epilepsy in Ohio. To send an email to your Representative, please click HERE.