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.
PAN Advocates’ Hard Work Garners Significant Victories
We strive to maintain a balance in serving people and their families currently living with Parkinson’s, while also supporting scientific research toward improved therapies and, ultimately, a cure. PAN advocates’ dedication and persistence toward our mission consistently yield significant victories. PAN advocates lead efforts to educate elected officials on the importance of and critical need for investing in research, providing incentives for investors, and promoting innovation.
Working toward a Brighter Future for the Parkinson’s Community
Securing Funding for Research and Drug Review:
- With sequestration, or large across-the-board budget cuts to federal agencies, now in effect, PAN advocates are speaking to their Members of Congress about the importance of supporting the highest possible funding level for biomedical research.
- PAN actively supports funding for the National Institutes of Health (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. While Congress provided a slight increase to the NIH in Fiscal Year (FY) 2013, sequestration cut more than $1.5 billion in funding. PAN supports at least $32 billion in funding for NIH in FY 2014.
- The Food and Drug Administration (FDA) plays an essential role in speeding access to safe and effective therapies for Parkinson’s and other diseases. Thanks to our advocacy work, Congress included a small increase for the FDA in FY 2013, but sequestration cut $209 million from the Agency’s budget. PAN is advocating for $2.6 billion for the FDA in FY 2014.
- PAN also provided FDA officials and Members of Congress high-level input on legislation to reform and enhance the FDA’s therapy approval process. PAN supported provisions in the Food and Drug Administration Safety and Innovation Act (P.L. 112-144) that are intended to ensure people with Parkinson’s and other chronic diseases have quicker access to safe and effective treatments.
Preserving the Department of Defense (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.
- While Congress passed a funding bill that included $16 million for the program in FY 2013, the program will be impacted by sequestration cuts.
- PAN continues to advocate for sustained funding for this critical program in FY 2014.
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.
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.
Working to End Restrictions on Federal Funding for Human Embryonic Stem Cell Research:
- In 2009, President Obama issued an Executive Order lifting the prior Administration’s restrictive policy on embryonic stem cell research, a major step forward for the Parkinson’s community.
- In August 2010, a federal judge imposed an injunction halting all federal funding for embryonic stem cell research. However, the D.C. District Court of Appeals ruled, in August 2012, that federal funding for human embryonic stem cell research is not prohibited by federal law and can continue. The ruling was then appealed to the U.S. Supreme Court.
- In January 2013, the U.S. Supreme Court denied certiorari, which means that President Obama’s Executive Order stands, and federal funding of embryonic stem cell research will continue.
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. PAN has largely focused on the defining of Essential Health Benefits (EHB), which certain health plans will be required to offer starting in 2014.
- PAN spearheaded a letter, signed by more than 100 organizations, and submitted several sets of comments to HHS emphasizing the importance of patient protections and access to affordable, quality care while establishing the EHB.
Safeguarding Medicare Coverage for People with Parkinson’s Disease:
- Federal law caps the total amount of outpatient therapy services a Medicare beneficiary can receive each calendar year. For people with Parkinson’s, annual therapy service costs often exceed the annual limit.
- In January 2013, the president signed legislation extending an exceptions process for Medicare reimbursement of medically necessary therapy services (physical, occupational, and speech-language therapy) through December 31, 2013.
- In early 2011, PAN joined with the Center for Medicare Advocacy in a class action lawsuit against HHS. The lawsuit challenges 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 October 2012, the plaintiffs and CMS reached a very favorable settlement in which CMS has agreed to change their policy. The court accepted the settlement, and Medicare will issue an updated policy manual by next year.
Ensuring Benefits for Veterans with Parkinson’s:
- PAN submitted comments and also encouraged advocates to submit comments supporting a proposed rule issued by the Veterans’ Administration that would make it easier for veterans with parkinsonisms, who sustained a moderate or severe traumatic brain injury, to receive care and compensation.
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 171 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.
