The MJFF Public Policy and Government Relations team had a busy month of May establishing new state-based Parkinson’s research registries in Maryland and Missouri, new National Plan to End Parkinson’s Act co-sponsors, and supported new access to care legislation. Two new staffers joined the team, as well, and they look forward to working with you all.
Sallie James, Associate Director, Government Relations Sallie joined MJFF after serving as the Senior Legislative Assistant and a Biden Administration appointee at AmeriCorps, the federal agency for volunteering and service. She also spent over four years in the office of North Carolina’s Governor Roy Cooper, working in legislative analysis and directorial roles. Her impact in government relations will assist her greatly in this new position where she will play a critical role in the strategic development and implementation of MJFF’s policy agenda at the federal level, focusing on federal appropriations for health research.
Drew Hatter, Government Relations Officer Drew is a government relations professional with a decade of experience working in public policy and government. Prior to joining MJFF, Drew worked as Federal Affairs Strategist at the American College of Obstetricians and Gynecologists (ACOG). Drew has also served in the U.S. House of Representatives as a Legislative Assistant for former Congressman Steve Stivers of Ohio. In his role on the Federal Government Relations Team, Drew will help develop, communicate and explain MJFF’s position on regulations and proposals to federal lawmakers and government officials, focusing primarily on the National Plan to End Parkinson’s Act and long-term care policies.
MAJOR POLICY ACCOMPLISHMENTS
State Policy Team Passes Four Proactive Bills!
The newly created State Government Relations Team, formed in late 2021 has nearly completed the 2023 Legislative Season with a victory tally of FOUR proactive bills being passed in state legislatures. These wins are four new states that will be bringing Parkinson’s Research Registry Programs online in Maryland, Missouri, Nevada, and Nebraska.
Maryland Governor Wes Moore Signs Parkinson’s Research Registry Following legislative passage of the Maryland Parkinson’s research registry bill, Governor Wes Moore signed the bill on May 3. Julia Pitcher, State Government Relations Director, and advocate Larry Zarzecki (pictured below) were honored to attend the bill signing event in the state capitol building in Annapolis.
Missouri Legislature Passes Parkinson’s Research Registry Missouri Senator Karla Eslinger and Representative Travis Smith worked diligently to roll the Parkinson’s research registry language into a healthcare package under HB 402 in the waning days of the state’s legislative session. That bill was passed on May 6 and is headed to Governor Mike Parson’s desk in the coming weeks. This marks the fifth research registry passed by the State Team in the two years since the Office was created in late 2021.
New York State Parkinson’s Research Registry The MJFF State Government Relations Team joined lawmakers and advocates in Albany to rally for a New York State Parkinson’s research registry. The proposed legislation (A.5803/S.4674) would empower New York’s Department of Health to create the infrastructure to collect invaluable data on the over 65,000 people diagnosed with Parkinson’s in the state and future diagnoses. The bill passed the state’s Senate but failed to passed the Assembly in time before the legisalure adjourned on June 9. However, New York is a carryover state whereby the bill will be picked up again in January 2024 for consideration in the Assembly. We’ll be working hard in the interim to make that happen!
Read more about the team’s exciting work in New York here.
POLICY IN PROGRESS
State Legislatures Make a Difference in Parkinson’s Research The State Legislative Season is plugging along for 13 states as 37 states adjourned for the year as of June 13. The MJFF State Government Relations Team began the 2023 legislative season with dozens of newly elected Governors and hundreds of newly elected state legislators -- and a lofty target of 10 states where registry bills were introduced. At the time this update is published, the State GR Team has two remaining states with research registry bills in play and continues to work with cautious optimism to get some across the finish line before the next set of states adjourn in the second half of the year.
Those states with proactive bills still under consideration are Massachusetts and Ohio. Stay tuned for more resources to be added to the MJFF State Action Center for ways to engage your local representatives and upcoming webinars! The Safe Step Act Provides Access to Care Through Employer Health Coverage We are helping advance the Safe Step Act (H.R.2630/S.652) -- bipartisan legislation that will help patients safely and efficiently access the best treatments for them. Too often, health insurers limit options to new and effective therapies for people living with Parkinson’s disease. Parkinson’s is complex and causes myriad symptoms that evolve over years of progression. The Safe Step Act will help patients who receive their health coverage through their employer access the therapies they need. The legislation will accomplish this by requiring health plans to provide a clear and transparent exception process for any medication step therapy protocol. We are working with the Safe Step Act Coalition and the offices of Senators Lisa Murkowski (R-AL) and Margaret Hassan (D-NH), and Representatives Brad Wenstrup (R-OH) and Raul Ruiz (D-CA) to get this bill passed and signed into law. In May, the Safe Step Act was reported out of the Senate Health, Education, Labor, and Pensions (HELP) Committee as an amendment to legislation that aims to improve prescription drug access and affordability so, now, it awaits action by the full U.S. Senate. This advancement is exciting, and we hope to see similar progress in the House soon. Stay tuned for ways you can take action to support this bill’s passage. Your voice will matter on this bill, and we will provide the community with an opportunity to encourage their members of Congress to support this legislation. The FIND Act Increases Access to Diagnostic Radiopharmaceuticals The Facilitating Innovative Nuclear Diagnostics (FIND) Act (H.R.1199/S.1544, bill one-pager) has been reintroduced in the House of Representatives and Senate. This legislation seeks to expand patient access to diagnostic radiopharmaceuticals, including those used for DaTscans, by addressing inadequate payments to health care providers. DaTscans are useful for differentiating Parkinson's from movement disorders that don't affect the dopamine cells such as essential tremor or drug-induced parkinsonism. We are supporting this legislation alongside the Medical Imaging & Technology Alliance (MITA). If you would like to advocate on behalf of this legislation, the MITA patient community, Right Scan Right Time, has launched a grassroots alert in support of this legislation. Increased PD Research and Care Funding Secured for the Department of Veterans Affairs Following more than a year-long lobbying campaign where thousands of advocates from across the country urged their federal lawmakers to expand and enhance services at the VA for military veterans living with PD, Congress approved a 25% increase in critically needed funding for the Parkinson’s Disease Research, Education and Clinical Centers (PADRECCs). The additional $2 million is the single largest funding increase for the PADRECCs in over 20 years of operation.
Support Increases for the National Plan to End Parkinson’s Act The bipartisan legislation (S.1064 / H.R.2365) currently has more than 80 congressional co-sponsors. In addition to MJFF Board member Jack Quinn is leading a letter signed by nearly 100 former members of Congress, we launched this petition last week and thousands of PD advocates have already signed (you can too!) urging for passage of the legislation. Plus, over 280 volunteer advocates have joined us so far this year for more than 110 meetings with congressional offices to seek and secure their endorsement of the measure. Mobilizing local constituents to share their stories is key to our success and having individuals like Pennsylvania advocate Lori DePorter step up to fight for its passage is extremely important. Lori recently launched a letter writing campaign with others in her local network spanning three different congressional districts to shore up support for the proposed law, wrote about her direct lobbying experience, and will be presenting a poster at the World Parkinson’s Congress of her advocacy engagement to encourage others to do the same. And, check out the People Are Talking About the National Plan page in the National Plan Action Center for related congressional press releases, Tweets, news articles, community posts, and videos. MJFF Calls for Ban of Trichloroethylene (TCE) A groundbreaking new study led by researchers at the University of California, San Francisco and published in JAMA Neurology found that Navy and Marine Corps veterans who were exposed to TCE-contaminated water at Camp Lejeune had a 70 percent higher risk of developing Parkinson’s disease compared with veterans who had done their military training elsewhere. This finding is one of many reasons The Michael J. Fox Foundation (MJFF) maintains an active, strategic public policy and government relations presence to advocate for those who have been exposed to dangerous chemicals that are linked to PD, and to push for research and prevention strategies to keep our troops safe at home and abroad. Read more about this issue on the MJFF Blog.
COMMUNITY VOICES The Spring/Summer 2023 edition of Fox Focus included a policy round-up that showcased the importance of advocacy and the role our community plays in educating lawmakers. Laura L’Ecuyer was diagnosed with Parkinson’s in 2020 at age 40. She lives in U.S. House Speaker Kevin McCarthy’s congressional district in Bakersfield, CA. Parkinson’s forced Laura to retire early from her role as a community service leader. Having the opportunity to advocate and meet with Mr. McCarthy’s staff about the National Plan to End Parkinson’s Act has given her renewed energy to work toward something good. She said, “I’m the kind of person who speaks from the heart. In my meeting with the Speaker’s staff, I talked about what it’s like to live with Parkinson’s and why we need Congress to support work toward a cure. After the meeting, I felt like I had a new purpose. It was such a wholesome feeling to do good, be in service to our community, and advocate for what we need to be able to live with Parkinson’s.”
We are grateful for Laura and the thousands of advocates who use their voices to ensure policymakers have a better understanding of Parkinson’s disease and the important work that must be done to prevent and cure it.
For more information about the impact policymakers have on preventing and curing Parkinson’s and ensuring access to care for those living with the disease, please contact us at policy@michaeljfox.org.
Ted Thompson, JD Senior Vice President, Public Policy THE MICHAEL J. FOX FOUNDATION FOR PARKINSON’S RESEARCH Here. Until Parkinson’s isn’t. Get involved at MICHAELJFOX.ORG
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