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.

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 yields 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

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, the only Parkinson's-specific federal research program.
• PAN is advocating for $25 million for the program in Fiscal Year (FY) 2012.  In June, the U.S. House of Representatives approved $16 million for the program.  Advocacy is ongoing.

Working to Advance the National Neurological Diseases Surveillance System Act (NNDSSA):

• This legislation will capture, for the first time, aggregate data on the incidence and prevalence of this progressive, neurodegenerative disease.
• In the 111th Congress, PAN advocates secured 206 Representatives and 30 Senators as cosponsors of this legislation.  In September, 2010, the House of Representatives passed the NNDSSA, a significant victory for the Parkinson's community.  Unfortunately, the Senate did not pass the bill.
• The legislation, reintroduced in the Senate and House of Representatives earlier this year as S. 425 and H.R. 2595, respectively, will ensure scientists, lawmakers, and members of the community have the necessary data and information to make sound decisions around and investments in future therapies and treatments. Currently, S.425 has 14 co-sponsors and H.R. 2595 has 46.

Developing New Drugs and Therapies Faster:

• PAN supports establishment of the National Center for Advancing Translational Sciences (NCATS), a new center in the National Institutes of Health (NIH).  The mission of NCATS will be to move high-need medical cures through the developmental pipeline faster -- giving hope to millions of patients and their families.
• PAN also continues to advocate for funding to implement the Cures Acceleration Network (CAN), a key component of health reform legislation which aims to speed up the development of new drugs and therapies.  The President's FY 2012 budget includes up to $100 million for this program. 
• In September 2011, the Senate Appropriations Committee approved an FY 2012 NIH budget that explicitly supports establishment of NCATS and funds CAN at $20 million.  A House proposal is currently under consideration and advocacy efforts are ongoing.

Securing Funding for Research and Drug Review:

• In June 2011, the U.S. House of Representatives approved an FY 2012 FDA budget that includes total cuts of approximately $285 million – a funding reduction of about 11.5% from FY 2011.  The cuts will impact all areas of FDA activity.  Advocacy to protect FDA funding in FY 2012 and beyond is ongoing.
• In September 2011, the Senate Appropriations Committee approved an FY 2012 NIH budget that includes total cuts of approximately $190 million – a funding reduction of about 0.62% from FY 2011. By contrast, a proposal being weighed in the House recommends a $1 billion increase – about 3.3% above FY 2011 levels. Advocacy efforts are ongoing.

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 June, the U.S. House reintroduced legislation to support embryonic stem cell research, H.R. 2376, the Stem Cell Research Advancement Act of 2011. Among other things, the bill would give legislative enforcement to President Obama's 2009 Executive Order.
• The Parkinson's community played a key role in submitting comments to NIH before the release of final guidelines.  The guidelines provide a pathway for existing stem cell lines, on which current research had only been able to proceed with non-federal funding, to gain the full support of the Federal government.
• In August, 2010, a federal judge imposed an injunction halting all federal funding for embryonic stem cell research.  On July 28, 2011, the D.C. District Court ruled that federal funding for human embryonic stem cell research is not prohibited by federal law and can continue – another significant victory.

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

Ensuring Access to Social Security Disability Benefits:

• In the spring of 2010, PAN developed and nationally distributed a patient assessment form that people with Parkinson's can share with their doctors to document symptoms in medical records used to determine eligibility for disability benefits.
• PAN continues its efforts to update the definition of Parkinson's disease used by the Social Security Administration (SSA) to determine Social Security Disability benefits to better address the varied symptoms of Parkinson's disease, particularly non-motor symptoms.

Safeguarding Medicare Coverage for People with Parkinson’s Disease:

• PAN advocates successfully pushed for legislation extending Medicare reimbursement for medically necessary therapy services (physical, speech, and occupational therapy) through December 31, 2011.

Supporting Vietnam Veterans with Parkinson’s Disease:

• In August 2010, the Department of Veterans Affairs finalized a regulation, effective November 1, 2010, to expand disability benefits for Vietnam veterans living with Parkinson's disease.  Parkinson's disease is now on the list of diseases presumed to be caused by exposure to Agent Orange during service in Vietnam.

Recognizing Parkinson’s Awareness Month:

• In 2010, for the first time ever, the U.S. Senate designated April as Parkinson's Awareness Month. Nearly thirty states and local governments followed with resolutions of their own. 2011 brought similar successes.
• We look forward to pursuing this official designation for years to come, ensuring Parkinson's disease is front of mind for the public and current and future lawmakers.