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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

 

Current Legislation

See all the current legislation we are tracking

Advocacy Spotlights

Pennsylvania PDMP Expansion Will Limit Access to Epilepsy Medication

10/24/14 - The Pennsylvania legislature sent to the Governor’s desk legislation that would expand the state’s prescription drug monitoring program (PDMP) to include Schedule V medications (SB 1180). The expansion would make it harder for patients to access some epilepsy medications, and would create an additional reporting burden for physicians, which may discourage them from seeing and caring for epilepsy patients. The Foundation, our local affiliates, and legislative champions like Representative William Adolph (PA 165), have advocated throughout the year for an exemption for epilepsy drugs, because delays in accessing medication due to onerous drug monitoring requirements can lead to breakthrough seizures and related complications, including death.  Despite this setback, the epilepsy community will continue to raise awareness about the critical role medications play in seizure control and advocate for an exemption for epilepsy medications from the drug monitoring program, which intends to curb abuse of prescription medications. You can learn more about the issue at http://bit.ly/EFPenn.

Op-Eds by Affiliates in Kentucky and New England Highlight Access Barriers in Marketplace Plans

10/24/14 - Recent opinion editorials, by Epilepsy Foundation of Kentuckiana Executive Director, Deb McGrath, and Epilepsy Foundation New England Director of Advocacy & Policy, Bill Murphy, highlight barriers to quality care for individuals on Marketplace Plans created by the Affordable Care Act.  Many individuals living with pre-existing conditions, like epilepsy, can now gain access to health insurance through the Marketplace, but some are still facing barriers to care due to limited benefits, and high cost-sharing.  As a leader of the I Am Essential campaign, the Foundation and its affiliates have called on Health & Human Services Secretary Burwell to address barriers to care in Marketplace plans. With open enrollment for the Marketplace just a few weeks away (November 15th), we will continue to advocate for affordable access to medications and health providers with state and federal regulatory agencies and legislators, and raise awareness with local and national media about the need to improve access to care in Marketplace plans.  You can read the op-eds and learn more about the I Am Essential campaign at http://bit.ly/EFACA

Iowa Issues Proposed Rules on Prior Authorization Deadlines

10/24/14 - The Iowa Insurance Division recently released proposed rules on the prior authorization process. Despite the legislature’s intent to streamline and standardize the prior authorization process when it passed H.F. 2463, the proposed rules would lead to confusion by creating two urgent claim standards, and allowing plans up to 15 days for non-urgent claims. Some plans would have to respond to urgent claims within 24 hours (including Marketplace plans) while others would have up to 72 hours (including employer-sponsored plans and Medicaid). The Foundation submitted comments in partnership with the Epilepsy Foundation of North/Central Illinois, Iowa, & Nebraska, urging the Division to institute a 24 hour turnaround for all urgent claims, not just Marketplace plans, and no more than 72 hours for all other claims, not 15 days as proposed. Responding within 72 hours to a request for prior authorization, and within 24 hours for an urgent claim, is commonplace throughout the country and necessary for providing timely access to care, especially for individuals seeking access to lifesaving medications, like those needed by people living with epilepsy. Restricting access to physician-directed care through unnecessary delays can significantly increase medical costs related to preventable seizures, along with lost wages and productivity.  Read the comment letter at http://bit.ly/EFIAPA.

Advocacy Updates

California

Cost Sharing

8/21/14 - 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

Advocacy Day

6/18/14 - 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.

 

Colorado

Driving Laws

2/4/14 - 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.

 

Florida

State Funding

5/19/14 - The Epilepsy Foundation and the Epilepsy Foundation of Florida are urging the Florida legislature to increase funding for Florida’s Epilepsy Service Providers (FESP),  a vital source of epilepsy support in the state Floridians living with epilepsy.  The legislature understands the importance of these programs and has added additional funds for the FESP to the budget.  If you live in Florida please thank your legislators and ask them to urge the Governor to sign the General Revenue Budget at: http://bit.ly/EFFLGRB.

 

Illinois

Advocacy Day

5/19/14 - On May 16th the Epilepsy Foundation affiliates in Illinois held an advocacy day in Springfield where more than one hundred advocates came together to meet with their legislators.  These epilepsy advocates urged legislators to support funding for important epilepsy programs throughout the state as well as adding epilepsy as a qualifying medical condition for the state's medical marijuana program.

 

Iowa

Prior Authorization

10/24/14 - The Iowa Insurance Division recently released proposed rules on the prior authorization process. Despite the legislature’s intent to streamline and standardize the prior authorization process when it passed H.F. 2463, the proposed rules would lead to confusion by creating two urgent claim standards, and allowing plans up to 15 days for non-urgent claims. Some plans would have to respond to urgent claims within 24 hours (including Marketplace plans) while others would have up to 72 hours (including employer-sponsored plans and Medicaid). The Foundation submitted comments in partnership with the Epilepsy Foundation of North/Central Illinois, Iowa, & Nebraska, urging the Division to institute a 24 hour turnaround for all urgent claims, not just Marketplace plans, and no more than 72 hours for all other claims, not 15 days as proposed. Responding within 72 hours to a request for prior authorization, and within 24 hours for an urgent claim, is commonplace throughout the country and necessary for providing timely access to care, especially for individuals seeking access to lifesaving medications, like those needed by people living with epilepsy. Restricting access to physician-directed care through unnecessary delays can significantly increase medical costs related to preventable seizures, along with lost wages and productivity.  Read the comment letter at http://bit.ly/EFIAPA.

Compassionate Access

10/24/14 - On September 11th Iowa’s Cannabidiol Implementation Study Committee held a hearing to discuss the proposed rules for the program and what still needs to be done to bring meaningful access to the people of Iowa.  The Foundation partnered with the Epilepsy Foundation of North/Central Illinois, Iowa, & Nebraska to send a letter urging them to work towards a comprehensive cannabidiol program.

The affiliate also testified before the committee and urged legislators to create meaningful access to cannabis as a treatment option for people living with intractable epilepsy and uncontrolled seizures. The state’s current medical cannabis program does not allow for growing, processing, and dispensing cannabis and products derived from the cannabis plant. This means that families seeking this treatment option would have to travel out of state to obtain CBD oil, and break federal laws by bringing it across multiple state lines. Although a number of states have medical cannabis programs, none except Oregon allow out of state residents to legally access CBD oil, and even in Oregon the patient must obtain a registration card and a recommendation from a physician licensed in Oregon. Families may seek products marketed as CBD oil that may turn out to be unsafe preparations with little or no CBD oil or medical benefit. Additionally, clinical trials for drugs derived from medical cannabis have limitations on the numbers and types of patients they can enroll, making it hard or impossible for families to enroll in trials.

The epilepsy community urged the Committee to protect Iowa residents by recommending that the legislature allow for growing, processing, and dispensing of CBD so families can have safe and legal access to this treatment option. The Committee appeared to understand the concerns of epilepsy community and passed a motion in support of these steps. Read the comment letter and stay informed about the latest developments to ensure safe and meaningful access to CBD oil in Iowa by visiting the medical cannabis section of the Foundation’s website at http://bit.ly/EFAccessAdvocacy.

State Funding

6/18/14 - 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.

Prior Authorization

4/17/14 - 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.

 

Kentucky

Access to Care

10/24/14 - Recent opinion editorials, by Epilepsy Foundation of Kentuckiana Executive Director, Deb McGrath, and Epilepsy Foundation New England Director of Advocacy & Policy, Bill Murphy, highlight barriers to quality care for individuals on Marketplace Plans created by the Affordable Care Act.  Many individuals living with pre-existing conditions, like epilepsy, can now gain access to health insurance through the Marketplace, but some are still facing barriers to care due to limited benefits, and high cost-sharing.  As a leader of the I Am Essential campaign, the Foundation and its affiliates have called on Health & Human Services Secretary Burwell to address barriers to care in Marketplace plans. With open enrollment for the Marketplace just a few weeks away (November 15th), we will continue to advocate for affordable access to medications and health providers with state and federal regulatory agencies and legislators, and raise awareness with local and national media about the need to improve access to care in Marketplace plans.  You can read the op-eds and learn more about the I Am Essential campaign at http://bit.ly/EFACA.

Maine

Access to Care

10/24/14 - Recent opinion editorials, by Epilepsy Foundation of Kentuckiana Executive Director, Deb McGrath, and Epilepsy Foundation New England Director of Advocacy & Policy, Bill Murphy, highlight barriers to quality care for individuals on Marketplace Plans created by the Affordable Care Act.  Many individuals living with pre-existing conditions, like epilepsy, can now gain access to health insurance through the Marketplace, but some are still facing barriers to care due to limited benefits, and high cost-sharing.  As a leader of the I Am Essential campaign, the Foundation and its affiliates have called on Health & Human Services Secretary Burwell to address barriers to care in Marketplace plans. With open enrollment for the Marketplace just a few weeks away (November 15th), we will continue to advocate for affordable access to medications and health providers with state and federal regulatory agencies and legislators, and raise awareness with local and national media about the need to improve access to care in Marketplace plans.  You can read the op-eds and learn more about the I Am Essential campaign at http://bit.ly/EFACA.

Maryland

Step Therapy

4/17/14 - 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.

 

Massachusetts

Access to Care

10/24/14 - Recent opinion editorials, by Epilepsy Foundation of Kentuckiana Executive Director, Deb McGrath, and Epilepsy Foundation New England Director of Advocacy & Policy, Bill Murphy, highlight barriers to quality care for individuals on Marketplace Plans created by the Affordable Care Act.  Many individuals living with pre-existing conditions, like epilepsy, can now gain access to health insurance through the Marketplace, but some are still facing barriers to care due to limited benefits, and high cost-sharing.  As a leader of the I Am Essential campaign, the Foundation and its affiliates have called on Health & Human Services Secretary Burwell to address barriers to care in Marketplace plans. With open enrollment for the Marketplace just a few weeks away (November 15th), we will continue to advocate for affordable access to medications and health providers with state and federal regulatory agencies and legislators, and raise awareness with local and national media about the need to improve access to care in Marketplace plans.  You can read the op-eds and learn more about the I Am Essential campaign at http://bit.ly/EFACA.

Minnesota

Advocacy Day

4/17/14 - 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.

 

New Hampshire

Access to Care

10/24/14 - Recent opinion editorials, by Epilepsy Foundation of Kentuckiana Executive Director, Deb McGrath, and Epilepsy Foundation New England Director of Advocacy & Policy, Bill Murphy, highlight barriers to quality care for individuals on Marketplace Plans created by the Affordable Care Act.  Many individuals living with pre-existing conditions, like epilepsy, can now gain access to health insurance through the Marketplace, but some are still facing barriers to care due to limited benefits, and high cost-sharing.  As a leader of the I Am Essential campaign, the Foundation and its affiliates have called on Health & Human Services Secretary Burwell to address barriers to care in Marketplace plans. With open enrollment for the Marketplace just a few weeks away (November 15th), we will continue to advocate for affordable access to medications and health providers with state and federal regulatory agencies and legislators, and raise awareness with local and national media about the need to improve access to care in Marketplace plans.  You can read the op-eds and learn more about the I Am Essential campaign at http://bit.ly/EFACA

Medicaid Expansion

4/17/14 - 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.

 

New York

SUDEP

5/19/14 - The New York legislature is considering legislation (SB 6232 and AB 8444) which would require the medical certificate portion of a death certificate to include whether the deceased suffered a sudden, unexpected death in epilepsy (SUDEP). Illinois and New Jersey already have passed similar SUDEP laws. Collecting SUDEP data is critical to improve our understanding of epilepsy related deaths and will allow us to discover risk factors and ways to prevent it. If you live in New York please urge your legislators to pass this important legislation at http://bit.ly/EFNYSUDEP.

 

Ohio

Prescription Drug Monitoring Program

6/18/14 - 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.

Prescription Drug Monitoring Program

2/4/14 - 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.

 

Pennsylvania

PDMP

10/24/14 - The Pennsylvania legislature sent to the Governor’s desk legislation that would expand the state’s prescription drug monitoring program (PDMP) to include Schedule V medications (SB 1180). The expansion would make it harder for patients to access some epilepsy medications, and would create an additional reporting burden for physicians, which may discourage them from seeing and caring for epilepsy patients. The Foundation, our local affiliates, and legislative champions like Representative William Adolph (PA 165), have advocated throughout the year for an exemption for epilepsy drugs, because delays in accessing medication due to onerous drug monitoring requirements can lead to breakthrough seizures and related complications, including death.  Despite this setback, the epilepsy community will continue to raise awareness about the critical role medications play in seizure control and advocate for an exemption for epilepsy medications from the drug monitoring program, which intends to curb abuse of prescription medications. You can learn more about the issue at http://bit.ly/EFPenn.

State Funding

7/22/14 - On July 10th, Governor Tom Corbett signed the Pennsylvania budget which included $550,000 for epilepsy programs administered by the two Pennsylvania affiliates, the Epilepsy Foundation of Eastern Pennsylvania and the Epilepsy Foundation of Western/Central Pennsylvania.  Our affiliates advocated with the legislature and the Governor’s office to maintain epilepsy funding, which will support training for school nurses and teachers, local support groups, information services, and other important programs for Pennsylvanians living with epilepsy.

State Funding

6/18/14 - 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

6/18/14 - 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

Advocacy Day

4/17/14 - 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

4/17/14 - 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.

 

Rhode Island

Access to Care

10/24/14 - Recent opinion editorials, by Epilepsy Foundation of Kentuckiana Executive Director, Deb McGrath, and Epilepsy Foundation New England Director of Advocacy & Policy, Bill Murphy, highlight barriers to quality care for individuals on Marketplace Plans created by the Affordable Care Act.  Many individuals living with pre-existing conditions, like epilepsy, can now gain access to health insurance through the Marketplace, but some are still facing barriers to care due to limited benefits, and high cost-sharing.  As a leader of the I Am Essential campaign, the Foundation and its affiliates have called on Health & Human Services Secretary Burwell to address barriers to care in Marketplace plans. With open enrollment for the Marketplace just a few weeks away (November 15th), we will continue to advocate for affordable access to medications and health providers with state and federal regulatory agencies and legislators, and raise awareness with local and national media about the need to improve access to care in Marketplace plans.  You can read the op-eds and learn more about the I Am Essential campaign at http://bit.ly/EFACA

Virginia

Northam

(Lieutenant Governor Ralph Northam, back center, surrounded by contest winners and Virginia Representatives)

2/4/14 - 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.

 

 

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State Laws and Regulations

Click on the links below for information regarding state laws and regulations that are important to the epilepsy community.

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