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Issue Background

Highlights from the Hill

December 2018

In this Issue:

National Advocacy 

  • Epilepsy Foundation Issues Statement on CMS Proposed Rule That Aims to Lower Prescription Drug Costs, But Weakens Medicare Part D's Six Protected Classes
  • IMPROVE Act Moves Forward in Congress 
  • Farm Bill Makes Its Way to the President's Desk, Legalizing Hemp and Hemp-Derived CBD
  • Epilepsy Foundation Signs onto Coalition Comment Letter about Autonomous Vehicles  
  • Open Enrollment for Marketplace Plans Ends December 15th 

State Advocacy

  • 2019 State Legislative Sessions


National Advocacy

Epilepsy Foundation Issues Statement on CMS Proposed Rule That Aims to Lower Prescription Drug Costs, But Weakens Medicare Part D's Six Protected Classes

In late November, the Centers for Medicare and Medicaid Services (CMS) released a proposed rule aimed at lowering prescription drug costs and costs for consumers within Medicare Parts C and D. While the Epilepsy Foundation supports some of the proposed policies, we are deeply concerned about the proposed changes that would weaken Medicare's six protected classes. The six protected classes were designed to ensure that Medicare Part D beneficiaries living with serious conditions - like epilepsy, HIV, mental illness, cancer and organ transplants - have reliable and affordable access to life-changing and life-saving medications. The proposed rule seeks changes that would allow new formulations of existing drugs to be excluded from the formularies. In addition, the proposal would allow for more utilization management like step therapy and prior authorization that create barriers to care. 

The Foundation issued an initial statement in response to the proposed rule and will continue to speak out to protect the six protected classes policy. We will continue to keep the epilepsy community apprised of our actions and opportunities to get involved. 

Learn more about Medicare's six protected classes at advocacy.epilepsy.com/ProtectedClasses.  

IMPROVE Act Moves Forward in Congress

On December 11, 2018, the House of Representatives passed the IMPROVE Act, H.R. 7217, by a 400-11 vote. This bipartisan health package, which combines aspects of smaller bills pertaining to Medicaid, addresses issues such as improving care for children and individuals with disabilities. 

The Advancing Care for Exceptional Kids Act of 2017 (ACE Kids Act), was included as part of H.R. 7217. This provision allows states to create programs to help coordinate care for children with complex medical needs. The Epilepsy Foundation, along with more than 30 national health organizations, have supported making the ACE Kids Act law. Another provision of the bill extends a Medicaid grant program called Money Follows the Person (MFP), which helps seniors and individuals with disabilities who live in nursing homes move back into their homes and communities, which has shown to improve health outcomes. The bill also includes a provision guaranteeing that Medicaid's married spousal impoverishment protections will continue to apply to home and community-based services (HCBS). Medicaid's spousal impoverishment protections make it possible for an individual who needs a nursing home level of care to qualify for Medicaid while allowing their married spouse to retain a modest amount of income and resources to pay for rent, food, and medication while the other spouse receives long-term services and supports. The Foundation signed onto a letter to the full House and a letter to the full Senate showing our support for the legislation. As the bill moves on to the Senate, we will continue to monitor its progress. 

Farm Bill Makes Its Way to the President's Desk, Legalizing Hemp and Hemp-Derived CBD

On December 11, 2018, the Senate approved the Farm Bill conference report, a five-year farm program reauthorization package, by a vote of 87-13. The bill, H.R. 2, passed in the House by a vote of 369-47 on December 12, 2018 after a quick turnaround. After securing passage in Congress, the bill is expected to be signed into law by the President. 

Before considering the bill, the conference committee removed controversial provisions including one that the Foundation supported removing-which would have attached work requirements to beneficiaries of the Supplemental Nutrition Assistance Program (SNAP).  Remaining in the bill and of importance and promise to the epilepsy community is that part of the farm bill legalizes hemp and hemp-derived cannabidiol (CBD) by changing the definition of hemp to include any cannabis plant or product derived from the cannabis plant that contains less than 0.3% THC by dry weight. It also amends the Controlled Substances Act to exempt hemp as a Schedule I substance. This essentially will allow states to regulate the production and commerce of, as well as research related to CBD.

However, this does not mean that all hemp-derived products, including CBD, are medically appropriate for all people with epilepsy. As of now, Epidiolex is the only FDA-approved CBD product to treat epilepsy and is specifically indicated for seizures associated with Lennox-Gastaut and Dravet syndromes. The farm bill does not change existing laws surrounding state medical cannabis programs. Individuals who purchase treatments through a medical dispensary and via a recommendation from their physician are still required to follow the regulations set forth including registration, renewal of medical cards, and other requirements decided by each state.

Learn more about the impact of the Farm Bill at advocacy.epilepsy.com/medical-cannabis.   

Epilepsy Foundation Signs onto Coalition Comment Letter about Autonomous Vehicles 

On December 3, 2018, the Foundation signed onto the Consortium for Citizen's with Disabilities' (CCD) comment letter to the United States Department of Transportation in response to a recent guidance, Preparing for the Future, AV 3.0. The letter commends Secretary Chao's commitment to ensuring improved mobility access for disabled individuals. The Foundation provided input for and signed on to a set of Autonomous Vehicle Principles, which are included with the comment letter. 

Of particular relevance to the epilepsy community, the principles point out that many people who are unable to operate a traditional vehicle could safely operate certain autonomous vehicles (AVs). The principles state that regulation of AVs should consider the needs of people with disabilities and not unnecessarily restrict their use through licensing requirements.

Learn more about our disability and discrimination advocacy efforts at advocacy.epilepsy.com/ADA

Open Enrollment for Marketplace Plans Ends December 15th 

The open enrollment period for the Health Insurance Marketplace will end December 15, 2018 for coverage beginning January 1, 2019. Those seeking to buy or change their Marketplace plan must do so during open enrollment unless a specific exception occurs like moving out of state or having a baby. It is very important to use this time to compare your coverage choices and find the plan that best meets your health care and prescription drug needs. Each year, plans make changes to benefits and costs, and new plans are available, so your current plan may or may not be the best plan for you in 2019. 

Learn more about your options at healthcare.gov or 1-800-318-2596 (TTY: 855-889-4325). Individuals may be eligible for premium tax credits that will help make coverage more affordable. 

Read more about open enrollment and find helpful resources at advocacy.epilepsy.com/openenrollment


State Advocacy

2019 State Legislative Sessions 

As 2018 comes to a close, the Foundation is gearing up for state legislative sessions beginning in January 2019. We are ready to engage and advocate to ensure access to physician-directed care and the rights of people with epilepsy. 

We want to make sure you are well informed about what is happening right in your backyard so that you don't miss an opportunity to share your voice with state and local policymakers. Please take a minute to update your contact information, including your home address, so that we can send targeted alerts based on your state and congressional district. You can update your information by completing the form here

Visit advocacy.epilepsy.com/states to find out what's going on in your state.


We encourage you to invite others to join our Speak Up, Speak Out! advocacy network. Members receive the monthly Highlights from the Hill newsletter and alerts about opportunities to advocate for the epilepsy community throughout the year. Growing our advocacy network is critical to achieving our public policy goals as we move through busy state and federal legislative sessions. Make a difference today by sharing our Speak Up, Speak Out! Network on Facebook and Twitter


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