Reported lobbying issue
Health Issues: General Parkinsons disease information, including disease burden, symptoms, health coverage, health care costs, environmental risk factors, and access to care for underserved communities. Implementation of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinsons Act (Public Law No. 118-66), including advocacy related to the development and execution of the National Parkinsons Project (NPP), interagency coordination, advisory council establishment, reporting requirements, and congressional oversight, as well as appropriations to support implementation activities. Federal funding for Parkinsons disease and neurodegenerative disease research at the National Institutes of Health (NIH), including advocacy for increased appropriations across NIH institutes (including the National Institute of Neurological Disorders and Stroke (NINDS) and National Institute on Aging (NIA)) and support for related congressional appropriations requests and communications. National Institute of Neurological Disorders and Stroke (NINDS) Morris K. Udall Centers of Excellence for Parkinsons Disease Research, including advocacy in appropriations to re-establish and expand Udall Centers, related report language, and coordination with the National Parkinsons Project. Advanced Research Projects Agency for Health (ARPA-H) and neurodegenerative disease research, including advocacy for report language directing prioritization of high-risk, high-reward research on Parkinsons disease and related neurodegenerative conditions. Alzheimers Disease and Alzheimers Disease-Related Dementias (AD/ADRD) research, including advocacy for report language to expand funding eligibility to Parkinsons disease and related dementias and support research on the intersection of Parkinsons disease and dementia. Centers for Disease Control and Prevention (CDC) National Neurological Conditions Surveillance System (NNCSS), including advocacy for continued appropriations to support data collection and surveillance of Parkinsons disease and related conditions. Department of Health and Human Services (HHS) coordination on environmental risk factors and neurodegenerative disease prevention, including advocacy for report language and funding to support interagency coordination and research on toxic exposures and Parkinsons disease and related conditions. The Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research And Innovation in Neurological Science (HEALTHY BRAINS) Act (H.R. 7779), including advocacy for cosponsorship and provisions supporting research on environmental risk factors and toxic exposures linked to neurodegenerative diseases. Environmental risk factors and Parkinsons disease, including advocacy related to pesticide exposure and paraquat, and support for Environmental Protection Agency (EPA) action to reassess and restrict or ban paraquat due to links to Parkinsons disease. The Paraquat Prevention Act (H.R. 9357): This legislation would direct EPA to cancel all registrations for the herbicide paraquat, revoke food-residue tolerances, prohibit the sale and use of existing stocks, and permanently bar re-registration, citing evidence linking paraquat exposure to an increased risk of Parkinsons disease. H.Amdt.196: An amendment to the 2026 Farm Bill (H.R. 7567, the Farm, Food, and National Security Act of 2026) that removed three pesticide-related provisions. The amendment eliminated language that would have: (1) limited certain lawsuits against pesticide manufacturers by making it more difficult to bring failure-to-warn claims based on health risks not included on EPA-approved labels; (2) restricted state and local governments from adopting pesticide requirements that exceed federal standards; and (3) modified environmental permitting and oversight requirements for pesticide use, including provisions affecting implementation of the Clean Water Act and other environmental laws. The Alzheimers Screening and Prevention (ASAP) Act (H.R. 6130 / S. 3267), including advocacy related to early detection of Alzheimers disease and related dementias and access to diagnostic tools. The Lowering Costs for Caregivers Act (S. 1565 / H.R. 138), including advocacy related to expanding the use of tax-advantaged health accounts (including HSAs, FSAs, and HRAs) to cover medical expenses for family caregivers and improving affordability of care. The Essential Caregivers Act of 2025 (H.R. 6766 / S. 3492), including advocacy related to ensuring access for designated essential caregivers in health care facilities during periods of restricted visitation under Medicare and Medicaid.
Medicare/Medicaid: Medicare and Medicaid coverage, access, and affordability of treatments for Parkinsons disease and other chronic conditions, including beneficiary access to care, prescription drug coverage, and utilization management policies. The Alleviating Barriers for Caregivers (ABC) Act (H.R. 2491 / S. 1227), including advocacy related to simplifying Medicare and Social Security processes and improving access to benefits for caregivers and individuals with chronic conditions. The Essential Caregivers Act of 2025 (H.R. 6766 / S. 3492), including advocacy related to ensuring access for designated essential caregivers in health care facilities during periods of restricted visitation under Medicare and Medicaid. The Alzheimers Screening and Prevention (ASAP) Act (H.R. 6130 / S. 3267), including advocacy related to Medicare coverage of blood-based biomarker tests for early detection of Alzheimers disease and related dementias. Centers for Medicare & Medicaid Services (CMS) policies, including advocacy related to Medicare Part D and Medicare Advantage, prescription drug affordability, formulary design, utilization management, and beneficiary protections.
Budget/Appropriations: Federal funding for Parkinsons disease and neurodegenerative disease research, care, and public health programs in Fiscal Year (FY) 2027 appropriations legislation including H.R. 9260 Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2027, H.R. 8469 Making appropriations for military construction, the Department of Veterans Affairs, and related agencies for the fiscal year ending September 30, 2027, and for other purposes, H.R. 8646 Agriculture, Rural Development, Food and Drug Administration, and Related Agency Appropriations Act, 2027, and other appropriations legislation. Advocacy related to funding levels, report language, and congressional appropriations requests. Support overall funding increases for medical research and neurological condition research across NIH, ARPA-A, DOD, and VA. Implementation of the Dr. Emmanuel Bilirakis and Honorable Jennifer Wexton National Plan to End Parkinsons Act (Public Law No. 118-66), including advocacy for appropriations to support implementation of the National Parkinsons Project (NPP), advisory council activities, and related reporting requirements consistent with enacted appropriations language. Federal funding for Parkinsons disease and neurodegenerative disease research at the National Institutes of Health (NIH), including advocacy for increased appropriations for Parkinsons disease and related conditions across NIH institutes (including the National Institute of Neurological Disorders and Stroke (NINDS) and National Institute on Aging (NIA)), and increasing investment for neurological disease research such as the BRAIN Initiative. National Institute of Neurological Disorders and Stroke (NINDS) Morris K. Udall Centers of Excellence for Parkinsons Disease Research, including advocacy for appropriations and related report language to expand the Udall Centers. Advanced Research Projects Agency for Health (ARPA-H), including advocacy for report language directing prioritization of neurodegenerative disease research and alignment with emerging opportunities in chronic disease and aging research. Department of Health and Human Services (HHS) environmental risk and prevention efforts, including advocacy for report language and appropriations to support interagency coordination and research on toxic exposures and neurodegenerative disease prevention. Alzheimers Disease and Alzheimers Disease-Related Dementias (AD/ADRD) research funding, including advocacy for report language to expand eligibility to Parkinsons disease and related dementias. Centers for Disease Control and Prevention (CDC) National Neurological Conditions Surveillance System (NNCSS), including advocacy for continued appropriations to support surveillance and data collection on Parkinsons disease and related conditions. Department of Defense (DOD) Congressionally Directed Medical Research Programs (CDMRP), including advocacy for funding for the Parkinsons Research Program (PRP) and the Toxic Exposure Research Program (TERP) to support research on Parkinsons disease and service-related exposures. Department of Veterans Affairs (VA) Parkinsons Disease Research, Education and Clinical Centers (PADRECCs) and Neurology Centers of Excellence, including advocacy for increased appropriations and report language to support research, clinical care, and access for veterans living with Parkinsons disease. Department of Veterans Affairs (VA) Office of Research and Development (ORD), including advocacy for report language to increase focus on Parkinsons disease and related conditions within VAs medical research portfolio. Food and Drug Administration (FDA) National Center for Toxicological Research (NCTR), including advocacy for appropriations and report language supporting research on toxic exposures and Parkinsons disease. Food and Drug Administration (FDA) neurodegenerative disease guidance and reporting, including advocacy for report language to improve coordination, transparency, and disease-specific guidance for Parkinsons disease and related conditions. Food and Drug Administration (FDA) Neurology Drug Program to coordinate efforts on central nervous system drug development.
Pharmacy: Prescription drug affordability and access for individuals with Parkinsons disease and other chronic conditions, including advocacy related to patient access to medications, cost-sharing, and barriers to accessing clinically appropriate medications. Prescription drug coverage and access under Medicare, including advocacy related to policies impacting access to Parkinsons disease treatments, formulary placement, and utilization management.
Veterans: Medical research, clinical care, and access to services for veterans living with Parkinsons disease and other neurological conditions, including advocacy related to programs, research, and exposure-related risk factors within the Department of Veterans Affairs (VA) and Department of Defense (DOD). Parkinsons Disease Research, Education and Clinical Centers (PADRECCs) and Department of Veterans Affairs (VA) Neurology Centers of Excellence, including advocacy for appropriations and report language to support specialized care, research, and access to services for veterans living with Parkinsons disease. Department of Defense (DOD) Congressionally Directed Medical Research Programs (CDMRP), including advocacy for funding for the Parkinsons Research Program (PRP) and the Toxic Exposure Research Program to support research on Parkinsons disease and service-related exposures. Research on service-related exposures and Parkinsons disease, including advocacy related to toxic exposures, traumatic brain injury, and other risk factors associated with military service and increased risk of neurodegenerative disease. The Boxing Therapy for Parkinsons Access Act (H.R. 9150), including advocacy related to requiring the VA to furnish boxing-based exercise classes to veterans who are enrolled in the VA health care system, have been diagnosed with ""Parkinson's disease or a similar movement disorder"", and specifically elect to participate in such classes.
Environment/Superfund: Environmental exposures and toxic substances linked to Parkinsons disease, including advocacy related to reducing or eliminating exposure to chemicals such as paraquat and other environmental contaminants associated with increased risk of neurodegenerative disease. The Harmonizing Environmental Analyses and Launching Therapeutic Hubs to Yield Bolstered Research And Innovation in Neurological Science (HEALTHY BRAINS) Act (H.R. 7779), including advocacy for research on environmental risk factors and toxic exposures linked to neurodegenerative diseases. The Paraquat Prevention Act (H.R. 9357): This legislation would direct EPA to cancel all registrations for the herbicide paraquat, revoke food-residue tolerances, prohibit the sale and use of existing stocks, and permanently bar re-registration, citing evidence linking paraquat exposure to an increased risk of Parkinsons disease. H.Amdt.196: An amendment to the 2026 Farm Bill (H.R. 7567, the Farm, Food, and National Security Act of 2026) that removed three pesticide-related provisions. The amendment eliminated language that would have: (1) limited certain lawsuits against pesticide manufacturers by making it more difficult to bring failure-to-warn claims based on health risks not included on EPA-approved labels; (2) restricted state and local governments from adopting pesticide requirements that exceed federal standards; and (3) modified environmental permitting and oversight requirements for pesticide use, including provisions affecting implementation of the Clean Water Act and other environmental laws.
Taxation/Internal Revenue Code: Tax policy related to financial support for family caregivers and individuals with chronic conditions, including advocacy to reduce out-of-pocket costs and improve affordability of care. The Lowering Costs for Caregivers Act (S. 1565 / H.R. 138), including advocacy related to expanding the use of tax-advantaged health accounts (including HSAs, FSAs, and HRAs) to cover medical expenses for family caregivers and improving affordability of care. The Credit for Caring Act of 2025 (S. 925 / H.R. 2036), including advocacy related to providing a nonrefundable tax credit to offset caregiving expenses for working family caregivers.
Agriculture: The Paraquat Prevention Act (H.R. 9357): This legislation would direct EPA to cancel all registrations for the herbicide paraquat, revoke food-residue tolerances, prohibit the sale and use of existing stocks, and permanently bar re-registration, citing evidence linking paraquat exposure to an increased risk of Parkinsons disease. H.Amdt.196: An amendment to the 2026 Farm Bill (H.R. 7567, the Farm, Food, and National Security Act of 2026) that removed three pesticide-related provisions. The amendment eliminated language that would have: (1) limited certain lawsuits against pesticide manufacturers by making it more difficult to bring failure-to-warn claims based on health risks not included on EPA-approved labels; (2) restricted state and local governments from adopting pesticide requirements that exceed federal standards; and (3) modified environmental permitting and oversight requirements for pesticide use, including provisions affecting implementation of the Clean Water Act and other environmental laws.
