Progress & Impact
PAN is the Unified Voice of the Parkinson’s Community
We are the unified voice of the Parkinson’s community advocating for better treatments and a cure. In partnership with other Parkinson’s organizations and our powerful grassroots network, we are a 501(c)(3) whose mission is to educate the public and government leaders on better policies for research and an improved quality of life for people living with Parkinson’s.
Working toward a Brighter Future for the Parkinson’s Community
Securing Funding for Research and Drug Review:
- Currently, the government is funded by a Continuing Resolution (CR) until January 15. A bipartisan and bicameral Budget Conference Committee has been charged with coming to an agreement to fund the government past that date. PAN is reaching out to members of the Committee and advocating for an end to sequestration and emphasizing the importance of fully funding the National Institutes of Health (NIH), Food and Drug Administration (FDA), and the Department of Defense (DoD) Parkinson’s research program.
- PAN actively supports funding for NIH, the largest single funder of Parkinson’s research in the world, in order to find better treatments and a cure for Parkinson’s disease. Sequestration cut more than $1.5 billion in NIH funding this year. PAN supports at least $32 billion in funding for NIH in FY 2014.
- The FDA plays an essential role in speeding access to safe and effective therapies for Parkinson’s and other diseases. PAN is advocating for $2.6 billion for the FDA in FY 2014.
- PAN supports the FDA Safety Over Sequestration Act (H.R. 2725) and the FDA User Fee Protection Act (S. 1413), which would exempt FDA user fees from sequestration starting in FY 2014 and beyond. User fees are a crucial and large part of the FDA budget and directly support the advancement of new and innovative therapies and devices.
- The Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, announced in the President’s FY 2014 Budget, is a $110 million initiative focused on increasing our understanding of the human brain. PAN is closely following the planning of the Initiative and will ensure that the Parkinson’s community is heard throughout the process.
- The FDA is currently working to enhance benefit-risk assessments in decision making and has committed to obtaining the patient perspective on 20 disease areas. In April, FDA announced that it plans to have a meeting on Parkinson’s and Huntington’s disease in FY 2015. PAN has participated in several meetings with FDA to discuss these patient centered meetings and about other opportunities to enhance the patient voice on risk-benefit decision making at the FDA.
Preserving the DoD Parkinson’s Research Program:
- Each year, the Parkinson’s community advocates for funding for the DoD’s Neurotoxin Exposure Treatment Parkinson’s Research (NETPR) program.
- With the current government funding bill set to expire in January, PAN continues to advocate for sustained funding for this critical program in FY 2014.
Working to Advance the Understanding of Parkinson’s Disease:
- In 2012, the CDC listed Parkinson’s as the 14th leading cause of death in the U.S. PAN is advocating for the CDC to collect more detailed data on the incidence and prevalence of Parkinson’s and other neurological diseases. We are currently working with Congressional supporters and community partners to identify the best way to collect this critical data.
Advancing Investments & Policies that Support
Today’s Parkinson’s Patients and Caregivers
Tracking Implementation of the Patient Protection and Affordable Care Act (ACA):
- PAN is closely monitoring implementation of provisions of the ACA, many of which will have broad implications for the Parkinson’s community.
- With enrollment in the new Health Insurance Exchanges beginning in October 2013, PAN has compiled a list of online resources, including a weekly Q&A series, to ensure those impacted by the ACA have accurate and thorough information when making coverage decisions.
Increasing Access to Specialized Care:
- In collaboration with a number of stakeholders, PAN is looking to remove the policy barriers to the practice of telemedicine in order to increase access to specialized care to improve quality of life for people living with Parkinson’s.
- Studies have found that seeing a neurologist or movement disorder specialist increases quality of life for people living with Parkinson’s, yet up to 42 percent of people with Parkinson’s are not seeing a neurologist.
- PAN endorsed the Veterans E-Health Telemedicine Support (VETS) Act of 2013 (H.R. 2001), which would remove existing barriers to the practice of telemedicine within the U.S. Department of Veterans Affairs, and the Telemedicine for Medicare (TELE-MED) Act of 2013 (H.R. 3077), which would allow doctors to see Medicare patients in different states via telemedicine without having to go through the arduous and expensive process of obtaining multiple state licenses.
Safeguarding Medicare Coverage for People with Parkinson’s Disease:
- Federal law caps the total amount of outpatient therapy services (physical, occupational, and speech-language therapy) a Medicare beneficiary can receive each calendar year. For people with Parkinson’s, annual therapy service costs often exceed the annual limit.
- While there is an exceptions process for Medicare reimbursement of medically necessary therapy services, it must be reauthorized every year by Congress. PAN, along with other members of the Therapy Cap Coalition, is currently working with Congress to ensure the exceptions process is extended for 2014.
- PAN supports the Medicare Access to Rehabilitation Services Act of 2013 (H.R. 713/S. 367), which would permanently remove the burdensome caps.
- PAN is also advocating for a permanent fix of the therapy caps be included in proposed legislation to permanently fix the Medicare Sustainable Growth Rate.
- In early 2011, PAN joined a class action lawsuit against HHS that challenged the Center for Medicare and Medicaid Service's (CMS) policy that denies Medicare coverage to those who are unable to show that they are improving from certain skilled care services, including therapy. In January 2013, the judge accepted a very favorable settlement in which CMS has agreed to change their policy, and CMS has one year to update the Medicare policy manual.
Building Congressional Support:
- The Congressional Caucus on Parkinson’s Disease was created to increase awareness on Capitol Hill of Parkinson’s disease issues and as a means to keep Members of Congress and their staffs informed of the latest developments in Parkinson’s-related legislation and biomedical research. The 172 Senators and Representatives on the Caucus, led by Co-Chairs Representatives Peter King (R-NY), Carolyn Maloney (D-NY), and Chris Van Hollen (D-MD) and Senators Mark Udall (D-CO), Debbie Stabenow (D-MI), Johnny Isakson (R-GA), and Mike Johanns (R-NE), work together to support the policy needs of the Parkinson’s community.
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