In 2018, as always, Parkinson's advocates spoke up loud and clear for the policy needs of our community. From January to October, nearly 18,000 people contacted their lawmakers more than 52,000 times to voice their opinions on research funding, health care access and more.
Thank you to every person who took action in 2018! By telling policymakers what is fundamentally important to people with Parkinson's and their loved ones, you helped shape Congress members' decision-making.
This year, our community:
- Eliminated the cap on Medicare therapy services. This cap restricted the amount of physical, occupational and speech therapy a beneficiary could receive. After years of advocacy work by the Parkinson's community and others, the cap was removed, meaning people on Medicare can no longer be denied therapy if they need it to manage their Parkinson's.
- Took the voice of Parkinson's patients and care partners to Washington. In March, nearly 300 Parkinson's advocates from nearly all 50 states convened in Washington, D.C. for the 2018 Parkinson's Policy Forum. Despite a snowstorm that shut down the government, attendees made their voices heard by tweeting lawmakers video messages about important policy issues, and they joined individuals across the country in sending an impressive 14,000 emails to Congress in 24 hours!
- Urged the government to consider the environmental causes of Parkinson's. Advocates strongly spoke out against a proposed rule that would negatively impact how the Environmental Protection Agency (EPA) regulates chemicals linked to disease, including those associated with Parkinson's. In addition, over 100,000 people signed a petition asking the EPA to ban the use of paraquat, a commonly used herbicide shown to increase Parkinson's risk across many studies. (A decision on both issues is pending; we'll continue to share updates in 2019.)
- Secured increased federal funding for Parkinson's research. After over a decade of advocacy efforts, Congress provided funding to implement a national database to gather critical demographic information on people living with neurological diseases, including Parkinson's. This will help researchers better understand these conditions and refine their work. Additionally, the National Institutes of Health saw a funding increase of $2 billion.
Public Policy Team Speaks Out for Parkinson's Community
In addition to the above topics, the Foundation also advocated for a number of additional policy issues to better support people with Parkinson's and their loved ones. Our Public Policy team conducted hundreds of meetings on Capitol Hill and sent thousands of letters to lawmakers this year. Among other accomplishments, they hosted two educational briefings for members of Congress, helped expand telemedicine services for veterans and spoke up for new laws that increase access to lower-cost prescriptions.
Advocacy Takes New Shape in 2019
Next year, the Foundation will work to enhance the network of grassroots Parkinson's advocates by establishing Fox 435. This program will seek to identify and train at least one community advocacy leader in each of the 435 congressional districts across the United States. These leaders will educate lawmakers on how policy impacts the Parkinson's community and will serve as a resource for other individuals looking to get involved in this work, helping to expand the number of passionate advocates throughout the country speaking out for policy change.
Download the Foundation's "2018 in Review, 2019 in Focus" booklet for more research and policy highlights, and info on what's to come next year.