The first half of 2021 has been a remarkable time for MJFF’s public policy advocacy on behalf of people and families living with Parkinson’s, as well as for researchers working on a cure.
Thanks to your efforts, we are celebrating a few big “wins” that have happened in this year alone. When you step up to make your voice heard on Capitol Hill, you send a ripple effect of change throughout the federal government. Here are some recent advancements:
U.S. House Appropriators approved the Fiscal Year 2022 spending bill for the Departments of Labor, Health and Human Services, Education, and related agencies, including research funding increases at the National Institutes of Health (NIH). The Appropriations process will continue well into September before the end of the current fiscal year, which ends on September 30. Increased funding at NIH means there will be greater opportunity for researchers to apply for funding. In the House Appropriations Labor-HHS report language, the subcommittee included language referring specifically to Parkinson’s and the need to prioritize research funding for the disease.
The Governor of California approved record-level funding of $8.4 million for the California Parkinson’s Disease Registry in the state’s new budget and to expand the registry to other neurological diseases. The registry’s goal is to acquire, record and analyze epidemiological data of the incidence and prevalence of disease that can identify Parkinson’s “hot spots” throughout the state that will aid scientists in their work toward finding a cure.
The Massachusetts legislature approved and the governor signed Parkinson’s disease registry with similar goals as the registry in California mentioned above. We'll be working with commonwealth officials on funding and next steps.
The Environmental Protection Agency reversed a rule that not only restricted science and data access for researchers, it also threatened to violate the privacy of people who are diagnosed with Parkinson’s.
The U.S. Department of Veterans Affairs (VA) announced they will now provide health care and VA benefits for veterans who served in the military in Southwest Asia with Parkinsonism related to Agent Orange exposure.
The second half of 2021 looks to be just as robust. We have a full policy agenda already under way — and we’ll need your help.
What’s coming up soon? Our focus for August is the Credit for Caring Act. This legislation would provide much-needed financial assistance in the form of a tax credit for eligible working family caregivers. The tax credit would be up to $5,000, which goes a long way toward defraying the nearly $7,000 many families spend each year in out-of-pocket caring costs.
The Michael J. Fox Foundation funded a study in 2019 that investigated the costs of Parkinson’s disease, both to the federal government as well as to American families. Indirect costs every year, including costs of missing work or retiring early to care for someone with Parkinson’s, is more than $26 billion. And, 62 percent of people with PD receive care from a family caregiver. That is one of many reasons we are dedicated to advocating not just for policies that support people with Parkinson’s, but also for those who care for people with PD.
To learn more about the Credit for Caring Act and what this tax credit could mean to our community, you can watch our educational webinar and send an email to your Senators and Representative to ask them to support this very important legislation.
Sign up for our policy network today to help advocate for this and other issues that are important to the Parkinson’s community.