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Highlights from the Hill July 22, 2014

Senate Supports $7.5 Million for Epilepsy Research at the Department of Defense

On July 17th the Senate Committee on Appropriations approved the Fiscal Year 2015 Department of Defense (DOD) Appropriations Bill, which includes $7.5 million for epilepsy research. A Committee report looked at health problems faced by service members returning from Iraq and Afghanistan and identified epilepsy among the health conditions on the rise. The report suggests DOD expand research on the link between traumatic brain injuries (TBIs) and epilepsy. .  We applaud the Committee for recognizing the connection between military service, TBIs and seizures, and the need to support epilepsy and TBI research, and are hopeful this will lead to important breakthroughs for the epilepsy community.

Patient Groups Advocate to Improve Access to Care in Marketplace Plans

The Epilepsy Foundation is among the patient groups leading the “I Am Essential” campaign to improve access to quality care in ACA Marketplace plans by addressing limited benefits, high cost-sharing, and lack of transparency that makes it hard for individuals, especially those living with chronic conditions, to receive the care they need. We are preparing a letter from patient and community organization urging the Department of Health and Human Services (HHS) to  enforce the ACA non-discrimination provisions, prohibit restrictive formularies and inadequate provider networks; address high cost-sharing, including inappropriate use of coinsurance; and improve plan transparency so that consumers can make informed decisions. To view the letter, please go to http://bit.ly/IAmEssential.
 

Report Highlights Effects of Cuts to Public Health Programs

On July 15th, the Coalition for Health Funding, a group of health organizations that advocates for increased funding for public health programs, held a briefing to unveil Faces of Austerity: How Budget Cuts Hurt America’s Health, a report focused on the impact of budget cuts on public health programs.  The report highlights more than 20 stories from across the country that show how sequestration and further budget cuts have impacted our public health.  To learn more and read the report please go to http://www.cutshurt.org/.

Meet with Your Legislators in August

Congress is preparing to leave Washington, DC in August and head back to their home districts to meet and work with constituents.  August is a great opportunity to meet with your Members of Congress, and share your stories and the issues that are important to you.  We encourage you to set up a meeting with the district offices during this time and urge your Representatives to support the Improving Regulatory Transparency for New Medical Therapies Act (H.R. 4299), bipartisan legislation that would end delays that keep new epilepsy drugs from entering the market.

Find out how to contact your Representative at http://bit.ly/EFRepInfo

Read more about H.R. 4299 and download a fact sheet you can print and bring to your district meeting at http://bit.ly/DEAdelays

 

States

Pennsylvania Approves Funding for Epilepsy Programs

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 advocates 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.

 

Compassionate Access and Medical Cannabis Legislation

An update from the states on medical cannabis and cannabidiol (CBD) oil legislation.

 

New York becomes 23rd State to Approve Medical Cannabis

On July 7th, Governor Andrew Cuomo held a signing ceremony for legislation (A 6357) that makes New York the 23rd state to approve a medical cannabis program.  This new program, which may take up to 18 months to implement, will allow for the use of medical cannabis by New Yorkers with epilepsy and other debilitating conditions.  If you live in New York please  thank your legislator at http://bit.ly/NYMMJThanks

Missouri Passes CBD Bill

On July 13th, Governor Jay Nixon signed into law legislation (HB 2238) that will allow the use of cannabidiol (CBD) oil for those living with intractable epilepsy, with a recommendation from a neurologist.

North Carolina Approves Use and Research on CBD

On July 3rd, Governor Pat McCrory signed into law legislation (HB 1220) that will allow the use of CBD oil for those living with intractable epilepsy, with a recommendation from a physician.  It will also set up a research program to study the effects of CBD on seizures using hemp grown by North Carolina universities.

Illinois Expands Medical Cannabis Program to Include Epilepsy

On July 20th, Governor Pat Quinn signed into law legislation (SB 2636) that will add epilepsy to the list of qualifying conditions for the state’s medical cannabis program, and also expand access for minors living with epilepsy.

Texas Advocates Educate Lawmakers on Need for CBD Oil Legislation

On June 23rd the Compassionate Access For Epilepsy (C.A.F.E.) Texas coalition held an educational presentation for members of the Dallas/Fort Worth legislative delegation. At the event, hosted by Representative Stephanie Klick and held in Grapevine, Texas, members of the Texas House of Representatives and Texas Senate and their staff heard from prominent speakers about CBD and epilepsy. Speakers included Paige Figi, the mother of Charlotte Figi, a child living with epilepsy and the focus of the CNN’s Dr. Sanjay Gupta documentary Weeds 2; and Joel Stanley, the cultivator of Charlotte’s Web, a strain of marijuana that has been shown to improve seizure control. Paige Figi and Joel Stanley, both with the Realm of Caring group in Colorado, are leading advocacy efforts in support of CBD oil legislation in other states.  Dr. Scott Perry of Cook Children’s Hospital and Donna Stahlhut, CEO for one of the Epilepsy Foundation affiliates in Texas, also spoke at the event. The presentation was well received and made an impact on those in attendance.

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