ADVERTISEMENT
ADVERTISEMENT

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.

 

 

Current Legislation

See all the current legislation we are tracking

Advocacy Spotlights

Maine Legislature Overrides Veto to Improve Health Plan Transparency

7/17/15 - On June 23 the Maine legislature overrode Governor LePage’s veto of LD 636, which would improve health plan transparency.  Health plans in Maine will now be required to post their prescription drug formularies online in a manner that will allow individuals to search and compare formularies and drug coverage.  Health plans will also be required to include information on access barriers like prior authorization, as well as cost-sharing requirements.  We applaud the legislature for overriding the Governor’s veto to help individuals living with epilepsy and other chronic conditions who need to be sure their medications are covered.
 

New York SUDEP Bill Passes Legislature

7/17/15 - As we mentioned in our last Highlights from the Hill, the New York legislature passed S. 1789 and A. 2359 which would require the medical portion of a death certificate to include a determination of whether the person suffered a sudden, unexpected death in epilepsy (SUDEP).  This data is critical to improve our understanding of SUDEP and epilepsy related death and allow us to better identify risk factors and preventive strategies. 

However, these bills still haven’t been signed in to law and are waiting for Governor Cuomo’s signature.  If you live in New York, please take a moment to urge Governor Cuomo to sign these important bills at http://bit.ly/15NYSUDEP.  You can learn more about SUDEP, including how to decrease your risk, at www.epilepsy.com/sudep.

California Senate Considering Legislation to Improve Access to Epilepsy Medications

7/17/15 - On Wednesday, July 15 the California Senate Health Committee passed a bill (AB 68) which would ensure that individuals living with epilepsy who are on Medi-Cal will have access to the treatments that their physician believes are the most clinically appropriate. This bill would require Medi-Cal to cover the anti-epilepsy drugs (AEDs) that have been prescribed by an individual’s treating physician so they can receive timely and appropriate care. The next step is for the full Senate to pass this important bill.  If you live in California be sure to look out for an email asking you to contact your State Senator when AB 68 gets closer to a vote.

 

Advocacy Updates

California

Access to Care

7/17/15 - On Wednesday, July 15 the California Senate Health Committee passed a bill (AB 68) which would ensure that individuals living with epilepsy who are on Medi-Cal will have access to the treatments that their physician believes are the most clinically appropriate. This bill would require Medi-Cal to cover the anti-epilepsy drugs (AEDs) that have been prescribed by an individual’s treating physician so they can receive timely and appropriate care. The next step is for the full Senate to pass this important bill.  If you live in California be sure to look out for an email asking you to contact your State Senator when AB 68 gets closer to a vote.

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

Compassionate Access

1/15/15 - In a complaint filed with the Supreme Court on December 18, 2014, the states of Oklahoma and Nebraska claim that Colorado’s Amendment 64, which permits the use and regulation of marijuana within the state, “is contradictory and obstructive to the CSA [Controlled Substances Act]”.

Oklahoma and Nebraska argue that the legalization of marijuana in Colorado has placed a burden on law enforcement to control the increased amount of marijuana crossing into their borders. They argue that the passing of Amendment 64 by Coloradoans has “created a dangerous gap in the federal drug control system” and allows marijuana to flow into their states. In a press release, Colorado’s attorney general, John Suthers, stated that the lawsuit has “no merit” and is rather an issue of "non-enforcement of federal laws regarding marijuana.”

This complaint was filed directly with the Supreme Court which handles all lawsuits involving two or more states. Cases between states are rare and in the past have mostly included boundary disputes and water rights issues. A case involving the burden placed on other states as a result of the legalization of marijuana in one state would set a new legal precedent. 

Some legal experts fear that a ruling in favor of Oklahoma and Nebraska would have dangerous implications on the already weakened limitations of Congressional authority set by a previous case, Gonzales v. Raich, which expanded the scope of Congress’ power to make marijuana illegal.  Permitting this lawsuit would also allow one state to interfere with the policies and laws enacted by citizens of another state, an action which could also have implications on a state’s constitutional right to implement its own laws. If there is a ruling in favor of Oklahoma and Nebraska, we do not believe that there would be any immediate impact on states with medical cannabis programs, but it could set a precedent for challenging these laws and impacting patients’ access to medical cannabis.

The complaint filed by Oklahoma and Nebraska can be found here: http://sblog.s3.amazonaws.com/wp-content/uploads/2014/12/Neb.-Okla.-original-suit-vs.-Colorado-12-18-14.pdf

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.

 

Connecticut

Access to Care

A recent op-ed by Epilepsy Foundation of Connecticut Executive Director, Linda Wallace, highlighted barriers to quality care for individuals on ACA Marketplace plans. As part of the I Am (Still) Essential campaign, 33 Epilepsy Foundation affiliates from across the country joined the letter to HHS Secretary Burwell and are raising awareness with local media and policymakers about the need to improve access to care in Marketplace plans.  You can read the op-ed and other recent op-eds by other Foundation affiliates at http://bit.ly/EFACA.

Delaware

Advocacy Day

From left to right, Val Budischak, program director at the Epilepsy Foundation of Delaware (EFDE); Representative Joseph Miro; Dr. Sarah Mullins, EFDE Board Member; and Ellen Spoehr, EFDE executive director

2/23/15 - On January 29th, the Epilepsy Foundation of Delaware held their legislative luncheon where they met with many of Delaware’s legislators to discuss the epilepsy communities policy priorities.  Members of the Epilepsy Foundation of Delaware’s Board of Directors were also in attendance to share why epilepsy is so important to them and to encourage legislators to support the Epilepsy Foundation.  We hope the Delaware legislature will pursue proposals that improve access to quality care for Delaware residents living with Epilepsy.

Florida

Award Ceremony

4/23/15 - On Tuesday, April 7th the Epilepsy Foundation of Florida (EFOF) honored six Florida lawmakers with the Champions of the Heart award for their individual efforts to help Florida residents and families impacted by epilepsy. Champions of the Heart honorees included Senators Jeff Brandes, Rene Garcia, and Denise Grimsley; and Representatives Katie Edwards, Matt Gaetz, and Matt Hudson. These elected leaders were chosen for their support for preserving epilepsy resources and promoting new treatment options for individuals living with epilepsy. We applaud all legislators who work in support of the epilepsy community.

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

Cost Sharing

3/24/15 - The Illinois legislature is considering legislation (HB 3605) which would limit the cost of drugs offered in the state’s ACA Marketplace to help those living with chronic conditions set a predictable and more affordable budget for their health care needs. HB 3605 would cap a single drug to $100 per month for silver, gold, and platinum plans, and $200 for bronze plans.

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

Transparency

6/18/15 - The Iowa Legislature has sent SF 510, a patient literacy and transparency bill, to Governor Branstad for approval.  This bill would make health plans more transparent and help individuals navigate the appeals process.  The Epilepsy Foundation and the Epilepsy Foundation North/Central Illinois, Iowa, & Nebraska have encouraged Governor Branstad to sign this important bill to ensure that comprehensive, easy to understand drug coverage information is available for Iowa residents, making it easier for all individuals, especially those living with complex chronic conditions like epilepsy, to make informed decisions when selecting a health plan. If you or someone you know lives in Iowa, please take a moment to contact the Governor at http://bit.ly/IASF510. You can also read the letter to Governor Branstad here:  

Prior Authorization

5/21/15 - The Iowa Legislature has sent HF 632, an insurance bill to the Governor for approval. The bill would require insurance companies respond to all prior authorization requests within 72 hours, improving access to care and health outcomes for Iowa residents living with epilepsy and other chronic conditions. The Epilepsy Foundation and the Epilepsy Foundation North/Central Illinois, Iowa, & Nebraska have encouraged Governor Branstad to sign this important bill to ensure that Iowa residents can access the medication they need in a safe and timely manner.  If you or someone you know lives in Iowa, take a moment to urge Governor Branstad to sign HF 632 at http://bit.ly/IAHF632.

Compassionate Access

4/23/15 - On March 30th, the Iowa Senate Ways and Means committee sponsored S.F. 484, which would establish safe and legal access to medical cannabis for Iowa residents living with epilepsy and other debilitating conditions. Iowa’s current CBD law has not improved access to CBD as a treatment option for uncontrolled seizures because it does not allow for state-regulated cultivation of cannabis for producing and dispensing medical cannabis treatments. Read our letter in support of this important bill:

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

7/17/15 - On June 23 the Maine legislature overrode Governor LePage’s veto of LD 636, which would improve health plan transparency.  Health plans in Maine will now be required to post their prescription drug formularies online in a manner that will allow individuals to search and compare formularies and drug coverage.  Health plans will also be required to include information on access barriers like prior authorization, as well as cost-sharing requirements.  We applaud the legislature for overriding the Governor’s veto to help individuals living with epilepsy and other chronic conditions who need to be sure their medications are covered.

Access to Care

4/23/15 - The Maine Senate is considering two pieces of legislation which would improve transparency and limit step therapy.  SP 229 would make prescription drug coverage and formularies more understandable and consumer-friendly for individuals searching for the drugs they need, whether they are reviewing their current health insurance plan or comparing new ones. SP 103 would limit the use of step therapy to ensure that people with epilepsy and other chronic conditions have access to the right medications in a timely manner and also limit costs for those who have completed the step therapy requirements for non-preferred drugs.  Both of these bills are important to help those living with epilepsy in Maine get appropriate and affordable care as easily as possible.  Read our letters in support of these important bills:

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

Access to Care

3/24/15 - The Maryland legislature is considering legislation (HB 990 and SB 834) which would limit mid-year formulary changes, prohibit discriminatory benefit design, and ensure that new medications are reviewed quickly for possible addition to health plan formularies.  Making these changes would improve access to care for those living with epilepsy and other chronic conditions. Read our joint support letters: 

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

Prior Authorization

5/21/15 - The Senate version of the Health and Human Services (HHS) budget includes language that makes limits prior authorization makes the process more transparent.  These changes would speed up the prior authorization process and allow Minnesota residents to access the medication they need in a safe and timely manner.  If you or someone you know lives in Minnesota, take a moment to urge your representative to support the inclusion of language improving the prior authorization process as they work on a compromise budget bill at http://bit.ly/MNHHSPA.

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.

 

Nebraska

Compassionate Access

1/15/15 - In a complaint filed with the Supreme Court on December 18, 2014, the states of Oklahoma and Nebraska claim that Colorado’s Amendment 64, which permits the use and regulation of marijuana within the state, “is contradictory and obstructive to the CSA [Controlled Substances Act]”.

Oklahoma and Nebraska argue that the legalization of marijuana in Colorado has placed a burden on law enforcement to control the increased amount of marijuana crossing into their borders. They argue that the passing of Amendment 64 by Coloradoans has “created a dangerous gap in the federal drug control system” and allows marijuana to flow into their states. In a press release, Colorado’s attorney general, John Suthers, stated that the lawsuit has “no merit” and is rather an issue of "non-enforcement of federal laws regarding marijuana.”

This complaint was filed directly with the Supreme Court which handles all lawsuits involving two or more states. Cases between states are rare and in the past have mostly included boundary disputes and water rights issues. A case involving the burden placed on other states as a result of the legalization of marijuana in one state would set a new legal precedent. 

Some legal experts fear that a ruling in favor of Oklahoma and Nebraska would have dangerous implications on the already weakened limitations of Congressional authority set by a previous case, Gonzales v. Raich, which expanded the scope of Congress’ power to make marijuana illegal.  Permitting this lawsuit would also allow one state to interfere with the policies and laws enacted by citizens of another state, an action which could also have implications on a state’s constitutional right to implement its own laws. If there is a ruling in favor of Oklahoma and Nebraska, we do not believe that there would be any immediate impact on states with medical cannabis programs, but it could set a precedent for challenging these laws and impacting patients’ access to medical cannabis.

The complaint filed by Oklahoma and Nebraska can be found here: http://sblog.s3.amazonaws.com/wp-content/uploads/2014/12/Neb.-Okla.-original-suit-vs.-Colorado-12-18-14.pdf

New Hampshire

Compassionate Access

4/23/15 - On Tuesday, April 21st the New Hampshire Senate Health and Human Services Committee held a hearing on HB 476, which would add epilepsy and other chronic conditions to the list of qualifying conditions for New Hampshire’s medical cannabis program.  The hearing was well attended by individuals in support of the bill and we are hopeful that it will receive a positive vote in the committee soon. 

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

7/17/15 - As we mentioned in our last Highlights from the Hill, the New York legislature passed S. 1789 and A. 2359 which would require the medical portion of a death certificate to include a determination of whether the person suffered a sudden, unexpected death in epilepsy (SUDEP).  This data is critical to improve our understanding of SUDEP and epilepsy related death and allow us to better identify risk factors and preventive strategies. 

However, these bills still haven’t been signed in to law and are waiting for Governor Cuomo’s signature.  If you live in New York, please take a moment to urge Governor Cuomo to sign these important bills at http://bit.ly/15NYSUDEP.  You can learn more about SUDEP, including how to decrease your risk, at www.epilepsy.com/sudep.

SUDEP

6/18/15 - The New York Legislature has passed legislation (S. 1789/A. 2359) which would require the medical certificate portion of a death certificate to include a determination of whether the person suffered a sudden, unexpected death in epilepsy (SUDEP). This data is critical to allow us to better identify risk factors and preventive strategies.  We were proud to work with our New York affiliates to support this important legislation and together we encourage Governor Cuomo to sign it without delay.

SUDEP

4/23/15 - The New York legislature is considering two bills which would that would benefit epilepsy research. A. 2359, introduced by Assembly Member Brindisi, and S. 1789, introduced by Senator Griffo, would require the medical certificate portion of a death certificate to include a determination of whether the person suffered a sudden, unexpected death in epilepsy (SUDEP). This data is critical to improve our understanding of SUDEP and epilepsy related death and allow us to better identify risk factors and preventive strategies.  If you live in New York, take a moment to urge the New York legislature to cosponsor A. 2359 and S. 1789 at http://bit.ly/EFNYSUDEP

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.

 

Oklahoma

Compassionate Access

1/15/15 - In a complaint filed with the Supreme Court on December 18, 2014, the states of Oklahoma and Nebraska claim that Colorado’s Amendment 64, which permits the use and regulation of marijuana within the state, “is contradictory and obstructive to the CSA [Controlled Substances Act]”.

Oklahoma and Nebraska argue that the legalization of marijuana in Colorado has placed a burden on law enforcement to control the increased amount of marijuana crossing into their borders. They argue that the passing of Amendment 64 by Coloradoans has “created a dangerous gap in the federal drug control system” and allows marijuana to flow into their states. In a press release, Colorado’s attorney general, John Suthers, stated that the lawsuit has “no merit” and is rather an issue of "non-enforcement of federal laws regarding marijuana.”

This complaint was filed directly with the Supreme Court which handles all lawsuits involving two or more states. Cases between states are rare and in the past have mostly included boundary disputes and water rights issues. A case involving the burden placed on other states as a result of the legalization of marijuana in one state would set a new legal precedent. 

Some legal experts fear that a ruling in favor of Oklahoma and Nebraska would have dangerous implications on the already weakened limitations of Congressional authority set by a previous case, Gonzales v. Raich, which expanded the scope of Congress’ power to make marijuana illegal.  Permitting this lawsuit would also allow one state to interfere with the policies and laws enacted by citizens of another state, an action which could also have implications on a state’s constitutional right to implement its own laws. If there is a ruling in favor of Oklahoma and Nebraska, we do not believe that there would be any immediate impact on states with medical cannabis programs, but it could set a precedent for challenging these laws and impacting patients’ access to medical cannabis.

The complaint filed by Oklahoma and Nebraska can be found here: http://sblog.s3.amazonaws.com/wp-content/uploads/2014/12/Neb.-Okla.-original-suit-vs.-Colorado-12-18-14.pdf

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

Step Therapy

4/23/15 - The Rhode Island House of Representatives is considering legislation, HB 5605, which would limit the use of step therapy to ensure that people with epilepsy and other chronic conditions have access to the right medications in a timely manner.  It would also bring clarity and transparency to the step therapy process and limit costs for those who have completed the step therapy requirements for non-preferred drugs.  Read our letter in support of this important bill:

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

South Dakota 

Transparency

3/24/15 - On March 12th South Dakota Governor, Dennis Daugaard, signed legislation (SB 118) to improve health plan transparency for all plans offered in South Dakota so everyone, especially persons living with complex chronic conditions can select a plan that they know covers their medications and specialists. Read our support letter: 

Texas

Compassionate Access

Texas CBD Signing

6/18/15 - On June 1st, Governor Greg Abbott signed SB 339 to create a tightly regulated system for the cultivation, production, and distribution of cannabidiol (CBD).  We were proud to support SB 339 in partnership with the Epilepsy Foundation Central & South Texas, the Epilepsy Foundation Texas- Houston/Dallas-Fort Worth/West Texas, and C.A.F.E. Texas to bring this treatment option to Texans living with uncontrolled epilepsy.

Compassionate Access

5/21/15 - On Tuesday, May 19th the Texas legislature passed SB 339, which would create a tightly regulated system for the cultivation, production, and distribution of cannabidiol (CBD).  We have supported this legislation in partnership with the Epilepsy Foundation Central & South Texas; the Epilepsy Foundation Texas – Houston/Dallas-Fortworth/West Texas; and C.A.F.E. Texas. SB 339 now heads to Governor Abbott and we are hopeful that he will sign the bill and bring this treatment option to Texans living with uncontrolled epilepsy.

 

Virginia

Compassionate Access

3/24/15 - On February 26th Virginia Governor, Terry McAuliffe, signed legislation (HB 1445) to provide an affirmative defense to those living with intractable epilepsy who possess cannabidiol oil (CBD) with a written certification from a physician.  This is an important step forward in protecting patients with epilepsy, but we urge the Virginia legislature to establish a full medical cannabis program when they reconvene next year to help ensure people living with epilepsy have safe, legal access to this treatment option.

Prior Authorization 

3/24/15 - Legislation (HB 1942 and SB 1262) that would improve the prior authorization process is awaiting Governor McAuliffe’s signature after passing the legislature. The bills would help improve access to care for those living with epilepsy and other chronic conditions by requiring Virginia’s health plans to comply with clear guidelines for a more patient-centered process.  We urge Governor McAuliffe to sign this legislation before the deadline on March 29th. Read our support letters: 

Advocacy Day

 

Left to right, Lieutenant Governor Ralph Northam accepts his certificate of appreciation from Epilepsy Foundation President & CEO, Phil Gattone.

2/23/15 - On January 27th, the Epilepsy Foundation of Virginia held the award ceremony for their “Use a Helmet, Prevent Epilepsy” poster contest.  The contest raises awareness about epilepsy and how it impacts children while dispelling many of the myths about seizures.  The event was held at Lieutenant Governor Ralph Northam’s office in Richmond and the Epilepsy Foundation’s President and CEO, Phil Gattone, was on hand to congratulate the winning group of kids.  During the meeting, Phil was able to present Lieutenant Governor Northam with a certificate of appreciation in recognition of his work for the epilepsy community and his work with the Epilepsy Foundation of 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.

 

 Wisconsin

Transparency 5/21/15 - The Wisconsin Senate is considering legislation, SB 138, which would improve transparency in health plans offered in Wisconsin’s insurance marketplace created by the Affordable Care (ACA).  SB 138 aims to increase transparency and access to vital information about qualified health plans, including online availability of prescription drug coverage and formularies, creating a more understandable and consumer-friendly experience for individuals searching for the treatments they need.  If you or someone you know lives in Iowa, take a moment to urge the Wisconsin Senate to support SB 138 at http://bit.ly/WISB138.

 

ADVERTISEMENT

State Laws and Regulations

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

ADVERTISEMENT