Highlights from the Hill
Highlights from the Hill November 21, 2013
CRPD Hearing Highlights Support for Ratification
The Senate Foreign Relations Committee held two hearings on the Convention on the Rights of Persons with Disabilities (CRPD), an international disabilities treaty modeled after the Americans with Disabilities Act. These hearings are a big step towards moving the treaty towards ratification.Attendance by supporters of ratification was strong with overflow rooms set up for both hearings.Secretary John Kerry spoke at the second hearing and urged the committee to support the CRPD.Secretary Kerry noted that by ratifying the CRPD the United States will have more leverage to influence other nations to improve the rights of those living with disabilities.Testimony by other witnesses highlighted the benefits of ratification and stressed the need for the United States to reclaim its position as a world leader for disability rights.
Ask your Senators to support ratification of the CRPD by clicking HERE.
Epilepsy Foundation Seeks Update to Medicare Guidelines for Prescription Drug Coverage
The Epilepsy Foundation submitted public comments to United States Pharmacopeia (USP) proposed update to the Medicare Model Guidelines.USP is charged by Congress with maintaining the Medicare Model Guidelines that guide formulary coverage in Medicare Part D plans, which provide access to prescription drugs for Medicare beneficiaries. Part D plans must cover at least two drugs in each USP class.
The Epilepsy Foundation asked USP to update the current classes under the Anticonvulsant category to reflect anti-epilepsy drugs' methods of action.Updates to the USP classes within the Anticonvulsant category would improve access to prescription medications to Medicare beneficiaries living with epilepsy by requiring Medicare Part D plans to cover a greater number of anti-epilepsy drugs.To read the letter please click HERE.
Budget Conference Committee Discussing Budget Deal
As part of the agreement reached by Congress to end the recent government shutdown, a committee charged with exploring a budget deal before the current continuing resolution runs out was formed. The House and Senate budget committee has begun meeting to discuss proposals to reach an agreement on a Fiscal Year 2014 budget and avert sequestration cuts at least for the coming year. As the committee looks to address the impact of the sequester, Congress must remember that nondefense discretionary (NDD) programs have borne the brunt of sequestration cuts up until now, with defense programs scheduled to take a big cut this coming year. It may look like defense is being hit hardest, but only because up until now the sequester cuts have disproportionately impacted NDD programs, like the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH). Ask your Members of Congress to replace the sequester with balanced cuts that do not disproportionately impact the programs that support the epilepsy community by clicking HERE.
NeuroPace Therapy is Approved by FDA
NeuroPace© RNS© System received premarket approval from the Food and Drug Administration (FDA) earlier this month.The RNS System is an implantable device that uses neurostimulation to detect when a seizure is oncoming and then sends imperceptible levels of electrical stimulation to disrupt the impending seizure.The device is intended for patients who have not been able to reach an acceptable level of seizure control with drug combination therapy.
In a recent study 55 percent of patients who had the device for at least two years experience a 50 percent or greater reduction in seizures.Frank Fischer, NeuroPace CEO said that he believes "physicians will be able to make this breakthrough therapy available to eligible patients in the very near future." To read more on the Neuropace RNS System please click HERE.
Letter to State Insurance Commissioners About EHBs
The Epilepsy Foundation is working with our affiliates to write to state insurance commissioners about Essential Health Benefits (EHBs) in the new marketplace plans.We believe that the EHBs are not sufficient to ensure adequate access for many who will be purchasing a Qualified Health Plan (QHP).The federal government hasn't provided satisfactory guidelines, and therefore it falls to state Insurance Commissioners to set up further rules.We are encouraging more robust prescription drug coverage as well as requirements to review new drugs within a set timeframe in order to determine if the drug should be included in the QHPs.We are also asking that the Commissioners establish limits on cost sharing for higher tier medications, among other recommendations. We are working closely with our affiliates to make sure our concerns are heard and recognized.
Wisconsin Holds Advocacy Day
The Epilepsy Foundation Heart of Wisconsin, together with the Epilepsy Foundation Western Wisconsin and the Epilepsy Foundation Southeast Wisconsin, held an epilepsy advocacy day on October 23rd, with the support of a grant from the Epilepsy Foundation.The event brought 55 advocates together in Madison, Wisconsin for a two day event where they received advocacy training the first day, and met with their state Senators and Representatives on the second day.Participants advocated for increased funding for epilepsy through the Wisconsin Department of Health Services; improved access to prescription drugs through changes to prior authorization and fail first practices; and requiring that medical examiners and coroners document history of seizure disorders or epilepsy on death certificates that involved an unexplained or premature death of a person with epilepsy.
New Hampshire Legislature Fails to Pass Medicaid Expansion
Governor Hassan had called a special legislative session for November 7th through the 21st to review the recommendations released on October 15th by abipartisan commission charged with exploring how New Hampshire could expand Medicaid to low income individuals currently not eligible. Medicaid expansion would help tens of thousands of New Hampshire residents who need medical coverage, including people living with epilepsy.The Epilepsy Foundation had called on our grassroots supporters in New Hampshire to support expansion, but unfortunately Medicaid expansion barely failed this session. We will continue to monitor this issue for next session. Please click HERE to urge your state representatives to expand Medicaid in New Hampshire next session!
State Medicaid Programs Review Coverage for AEDs
The Epilepsy Foundation Central & South Texas and the Epilepsy Foundation Texas – Houston/Dallas Fort Worth/West Texas wrote to the state's Health and Human Services Commission urging them to maintain access to all anti-epilepsy drugs (AEDs) in the Medicaid program.Allowing comprehensive access to AEDs helps to reduce costs for the Medicaid program individuals who achieve and maintain seizure control utilize emergency and urgent care resources less frequently.Furthermore, forcing patients to switch medications can result in breakthrough seizures and additional side effects, a result that is not beneficial to the patient or Medicaid program.The Pharmaceutical and Therapeutics Committee, which develops preferred drugs lists recommendations for the Commission, will meet on November 22nd to review AEDs in the Medicaid formulary. We are hopeful that they will stand with the epilepsy community and maintain access to a wide variety of epilepsy treatments.To read the letter please click HERE.
Pennsylvania PDMP Bill Passes House with AED Exemption
The Pennsylvania legislature has been considering a bill (HB 1694) that would expand the prescription drug monitoring program to include Schedule V drugs, the schedule that contains the vast majority of antiepilepsy drugs (AEDs).Last Highlights from the Hill we asked all Pennsylvania residents to reach out to their state Representative and urge him or her to support an exemption for all Schedule V drugs, or at the very least AEDs.Thanks to everyone's advocacy efforts there is now an amendment that exempts all non-narcotic Schedule V AEDs, which means most AEDs are exempted.We are very happy with this amendment and so proud of the epilepsy community for stepping up and voicing their opinion.We will be watching this legislation as it heads to the Senate, so keep an eye out for more chances to advocate for access to AEDs!
New York Affiliates Go to Albany For Advocacy Day
Epilepsy advocates met in Albany, New York for a productive advocacy day as they met with several state senate and assembly offices.The four Epilepsy Foundation affiliates in New York organized this great day, with grant support from the Epilepsy Foundation, as they spread epilepsy awareness and urged support for S.D. 57, an important piece of step therapy legislation that the affiliates have been supporting.Advocates from the Epilepsy Foundation Long Island, Epilepsy Foundation Rochester/Syracuse/Binghamton, Epilepsy Foundation Northeastern New York, and Epilepsy Foundation Metropolitan New York also presented many offices with a petition that they have been circulating that has garnered over 300 signatures.
2014 Annual Walk for Epilepsy
The 2014 National Walk for Epilepsy is taking place Saturday March 22, 2014 in Washington, D.C. Last year almost 500 teams came together to raise awareness and funds to continue the fight to stop seizures, find a cure and overcome the challenges created by epilepsy. Click HERE to learn more and sign up!
Legal Defense Newsletter is Out Now!
The winter edition of the Jeanne A. Carpenter Epilepsy Legal Defense Fund Newsletter is out and available to read.This edition profiles John T. Wagener, an attorney in our network who has fought diligently to help those living with epilepsy.Click HERE to read about him and other important news for the epilepsy community.
Healthcare Reform Resources
Next week the healthcare access page will be updated to a new layout and with more resources to help you navigate the Marketplace.Most importantly there will be a checklist that you can fill out for each plan you are considering.It will be an important tool for working through the plans that are out there.Keep an eye out on the Access to Care & Treatments page for the coming changes.