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 are funded.
  • PAN is requesting at least $32 billion for NIH and an increase for the National Institute of Neurological Disorders and Stroke (NINDS) for FY 2015.
  • In March and May 2014, PAN submitted testimony to the House Appropriations Labor-HHS Subcommittee and the Senate Labor-HHS Subcommittee, respectively, in support of $32 billion for NIH and a funding increase for NINDS to help implement the 31 priority research recommendations for Parkinson’s identified by NINDS in January 2014.
  • In June 2014, the Senate Appropriations Labor-HHS 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.
  • The Senate L-HHS Appropriations Subcommittee bill report includes language, written by PAN and formally requested to be included in the report by Senators Mark Udall (D-CO) and Cory Booker (D-NJ), encourages NINDS to implement the recommendations and asks for an update on progress in FY 2016. Committee report language, while non-binding, is often used to identify and direct action on Congressional priorities.
  • On July 31, the Senate co-chairs of the Congressional Caucus on Parkinson’s Disease sent a letter to Health and Human Services Secretary Sylvia Burwell, commending NINDS for its work and commitment to Parkinson’s research and urging the Secretary to make the implementation of the 31 Parkinson’s research recommendations a priority in NIH’s work moving forward.
  • 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.
  • 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.
  • In June, the House of Representatives passed their FY 2015 Defense Appropriations bill, which included $16 million for the DoD Parkinson’s research program.
  • In July, the Senate Appropriations Committee passed its version of the FY 2015 Defense Appropriations bill, which recommended a 5 percent increase for Defense medical research programs. While the Senate Defense bill does not traditionally fund most individual medical research initiatives, PAN will work with both Committees moving forward to ensure that the program is fully funded next year.
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.
  • PAN sent a letter of support for the Medicare Telehealth Parity Act of 2014. The legislation, introduced by Reps. Mike Thompson (D-CA) and Gregg Harper (R-MS), would gradually expand coverage of telehealth services under Medicare. 
  • PAN submitted comments in July to a House Small Business Subcommittee on Health and Technology hearing on telehealth, outlining policy barriers that we believe are hindering the natural expansion of telehealth and urging the Subcommittee  to incentivize pharmaceutical and biotechnology companies to incorporate telehealth into their clinical trials.  
  • 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.  PAN submitted written comments providing our recommendations on how to expand access to telehealth and 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 continues to support the Veterans E-Health Telemedicine Support (VETS) Act of 2013 (H.R. 2001) and the Telemedicine for Medicare (TELE-MED) Act of 2013 (H.R. 3077).

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 year-long extension of the Medicare therapy caps exceptions process through the end of March 2015.
  • 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 update was the result of a class action suit joined by PAN and filed in 2011. The policy manual is used by Medicare contractors in determining coverage of services. The effective date of these changes was January 7, 2014.
  • In June, PAN released a new factsheet about the Medicare therapy caps and the Improvement Standard to help provide 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. The proposed rule would have removed the "protected" status for antidepressants and immunosuppressants in Calendar Year (CY) 2015 and anti-psychotics in CY 2016. 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.
  • 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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