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:

  • Congress has begun the annual appropriations process for Fiscal Year (FY) 2015 and PAN is working to ensure key Agencies and programs, such as the National Institutes of Health (NIH), Food and Drug Administration (FDA), and the Department of Defense Parkinson’s research program.
  • PAN is requesting at least $32 billion for NIH and increase for the National Institute of Neurological Disorders and Stroke (NINDS) for FY 2015.
  • In March 2014, PAN submitted testimony to the House Appropriations Labor-HHS Subcommittee in support of $32 billion for NIH and a funding increase for the National Institute of Neurological Disorders and Stroke to help implement the 31 priority research recommendations for Parkinson’s identified by NINDS in January 2014.
  • In June 2014, the Senate Appropriations Labor, Health and Human Services, and Education Subcommittee provided the NIH with a $605 million increase over current spending for NIH to $30.4 billion, as well as a $25 million increase for NINDS, which has recently adopted 31 Parkinson’s research priority recommendations.
  • PAN is requesting $2.7 billion in FDA funding for FY 2015. The FDA plays an essential role in speeding access to safe and effective therapies for Parkinson’s and other diseases. In June, the House Appropriations Committee provided the FDA with $2.583 billion, a $23 million increase over last year, and the Senate Appropriations Committee provided $2.588, a $36 million increase over FY 2014. Neither House has passed their version of the bill.
  • 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, including a tentative plan to have a meeting on Parkinson’s and Huntington’s disease. 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.
  • Each year, the Parkinson’s community advocates for funding for the DoD’s Neurotoxin Exposure Treatment Parkinson’s Research (NETPR) program. 
  • PAN is requesting $16 million in DoD funding for the Parkinson’s research program in FY 2015.
  • Through Congressional Caucus leadership, PAN collected over 50 bipartisan House member signatures in support of the program for FY 2015.
  • In June, the House of Representatives passed their FY 2015 Defense Appropriations bill, which included $16 million for the DoD Parkinson’s research program. The Senate will likely work on the Defense bill in July.
Increasing Access to Specialized Care:
  
  • In collaboration with a number of stakeholders, PAN is working to remove the policy barriers to the practice of telehealth in order to increase access to specialized care for people living with Parkinson’s.
  • A PAN grassroots leader testified on behalf of PAN at a May 1 House Energy and Commerce Subcommittee on Health’s hearing on Telehealth to Digital Medicine: How 21st Century Technology Can Benefit Patients, sharing his experience on the potential benefits of telehealth for people with Parkinson’s. Responding to a call from the Committee, PAN submitted written comments providing our recommendations on how to expand access to telehealth. PAN also led a sign-on letter signed by 14 patient groups showing patient support for telehealth. 
  • PAN, with the Feinstein Institute, held an educational event and reception on telemedicine on May 6, 2014. Entitled, “Is There a Doctor in the House? Telehealth and Parkinson’s,” the event brought  together Washington-area health professionals and people with Parkinson’s to learn about telehealth, how it is currently being used, and PAN’s work to overcome the policy hurdles.  
  • PAN also submitted comments to the Federation of State Medical Board’s on their draft model telehealth policy and state licensure compact.
  • PAN supports 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.

Advancing Investments & Policies that Support
Today’s Parkinson’s Patients and Caregivers

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.
  • PAN continues to advocate for a permanent fix of the therapy caps and 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 was 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.
  • In June, PAN released a new factsheet about the Medicare therapy caps and the Improvement Standard to help quick information on these important topics.
  • In January, CMS issued a proposed rule for Medicare Part D that would remove antidepressants as a "protected class" under Medicare Part D. Currently, under the Medicare program, Part D prescription drug plans must cover all or substantially all of drugs in six classes: anti-retrovirals; immunosuppressants; antidepressants; anti-psychotics; anti-convulsant agents; and anti-neoplastics. The proposed rule would have removed the "protected" status for antidepressants and immunosuppressants in Calendar Year (CY) 2015 and anti-psychotics in CY 2016, which would have negatively impacted the Parkinson's community. Thanks to advocacy from PAN and other stakeholders, CMS announced in March it would not pursue the controversial proposal to remove the protected classes.

Improving Access to Disability Benefits:

  • The Social Security Administration (SSA) is revising the regulations used to evaluate whether people with Parkinson’s and other neurological disorders qualify for Social Security disability insurance (SSDI), marking the first broad-scale overhaul of the criteria since 1985.
  • PAN, with the help of an ad hoc committee of clinicians and advocates, submitted comments on April 28, 2014, urging SSA to ensure that the final rule takes into account the full spectrum of clinical evidence used to diagnose Parkinson’s, recognizes that Parkinson’s will present differently in each person from day to day, and reflects both motor and non-motor symptoms.
  • PAN sent an alert encouraging the Parkinson’s community to weigh-in on this important issue, which resulted in over 500 Parkinson’s-specific comments being sent to SSA.

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 178 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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