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:

  • In January 2014, Congress passed legislation to fund the federal government for Fiscal Year (FY) 2014. The finalized FY 2014 funding package was made possible after Congress reached a broader agreement on spending for the next two years in December 2013 that includes some sequestration relief. 
  • PAN staff and members of the PAN grassroots community advocated for an end to sequestration and emphasized 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.
  • As part of the final spending deal, NIH, the largest single funder of Parkinson’s research in the world, received approximately $30 billion. This total is $1 billion above previous spending levels under sequestration, but it is still below funding before sequestration took effect last year. Overall, the funding level is estimated to allow the NIH to continue all current research programs and begin approximately 385 additional research studies and trials.  PAN is requesting at least $32 billion for NIH and increase for the National Institute of Neurological Disorders and Stroke (NINDS) for FY 2015.
  • The spending package included a commitment to the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative, which was first announced in the President’s FY 2014 Budget. The project is a $110 million Initiative focused on increasing our understanding of the human brain, and PAN is closely following the Initiative and will ensure that the Parkinson’s community is heard throughout the process. 
  • The FDA received $2.55 billion for FY 2014, which restores spending lost to sequestration, plus an additional $91 million.  The FDA plays an essential role in speeding access to safe and effective therapies for Parkinson’s and other diseases.  PAN is currently evaluating its funding request for NIH for FY 2015.
  • FDA funding included the restoration of $85 million in privately funded user fees. User fees are a crucial and large part of the FDA budget and directly support the advancement of new and innovative therapies and devices. Previously, 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.  
  • 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 2013, 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. 
  • As part of the final FY 2014 spending package, the DoD Parkinson’s research program received $16 million, which matches PAN’s request and fully restores funding lost to sequestration.
  • Given that defense spending faced a number of difficult choices, this is a significant victory for the Parkinson’s community and recognition by Congressional leaders that the program should be a continued priority.
  • PAN is again requesting $16 million in DoD funding for the Parkinson’s research program in FY 2015.

Working to Advance the Understanding of Parkinson’s Disease:

  • 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

Monitoring 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. 
  • PAN compiled a list of online resources, developed a weekly Q&A series, held webinars, and provided additional materials 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 working to remove the policy barriers to the practice of telemedicine in order to increase access to specialized care for people living with Parkinson’s.
  • PAN, along with the Feinstein Institute, is planning an educational event and reception on telemedicine for May 6, 2014. Entitled, “Is There a Doctor in the House? Telemedicine and Parkinson’s,” the event will bring together Washington-area health professionals and people with Parkinson’s to learn about telemedicine, how it is currently being used, and PAN’s work to overcome the policy hurdles.
  • 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, successfully advocated for a three-month extension of the Medicare therapy caps exceptions process through the end of March 2014.
  • As part of broader reform efforts around the Medicare Sustainable Growth Rate (SGR), which is the formula currently used to reimburse doctors for providing Medicare services, PAN is advocating for a permanent fix of the therapy caps be included in legislation to permanently fix the Medicare SGR.
  • PAN supports the Medicare Access to Rehabilitation Services Act of 2013 (H.R. 713/S. 367), which would permanently remove the burdensome caps. 
  • In December 2013, the Centers for Medicare and Medicaid Services (CMS) took an important step to remove the improvement standard by releasing updates to the policy manual, which clarifies that Medicare beneficiaries can no longer be denied coverage for skilled therapy services solely for lack of improvement. The policy manual is used by Medicare contractors in determining coverage of services. The effective date of these changes is January 7, 2014.
  • The policy manual update was the result of a class action lawsuit filed in early 2011. PAN joined in the suit against HHS, which challenged the CMS policy that denies Medicare coverage to those who are unable to show that they are improving from certain skilled care services, including therapy. 

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 174 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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