THE MICHAEL J. FOX FOUNDATION FOR PARKINSON'S RESEARCH for THE MICHAEL J. FOX FOUNDATION FOR PARKINSON'S RESEARCH
What was lobbied
8 issue areas, each in the filer's own words, with who lobbied on it and where.
Health Issues HCR
H.R.2365/S.1064 - National Plan to End Parkinson's Act: a bill to create an advisory council comprising members of federal agencies that support research, care, and services for Parkinsons, plus patients, care partners, researchers, clinicians, and other non-federal experts to ensure efficient and effective coordination among all federal entities with responsibility for managing, treating, and curing Parkinsons disease. General Parkinson's disease information about symptoms, triggers, health coverage, health costs, social determinants of health related to Parkinson's disease and data collection, research, environmental risks, and health access for underserved communities. Information related to prevalence particularly at CDC's National Neurological Conditions Surveillance System (NNCSS). H.R.2630/S.652/S.1339 - Safe Step Act: a bill to require group health plans to provide an exception process for any medication step therapy protocol to help ensure that people living with Parkinson's disease can safely and efficiently access treatments. Establishing Parkinson's disease ICD-10-CM codes to assist in the continuation and coordination of care for people living with Parkinson's who experience OFF episodes and to allow researchers to gather more data to study the progression of the disease. Reauthorization of CDCs National Neurological Conditions Surveillance System (NNCSS). S.1544/H.R.1199 - Facilitating Innovative Nuclear Diagnostics Act of 2023: a bill to establish separate payment requirements for diagnostic radiopharmaceuticals, including DaTscans, which can aid in confirming a Parkinson's diagnosis, under the Medicare prospective payment system for hospital outpatient department services. H.R.3432 - Telemental Health Care Access Act of 2023: a bill to permanently remove Medicare's originating site requirements for mental health services furnished via telehealth. Parkinson's non-motor symptoms encompass mental health conditions, including anxiety, depression, dementia, and other memory problems, and the majority of people living with Parkinson's in the United States are Medicare beneficiaries, many of whom will face undue burdens meeting the unnecessary in-person requirement for telemental health services after the delay of the requirement enforcement expires December 31, 2024. H.R.830/S.1375 - Help Ensure Lower Patient Copays Act: a bill to require health insurance plans to apply certain payments made by, or on behalf of, a plan enrollee toward a plan's cost-sharing requirements. Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the requirements. Many Parkinson's patients rely on such third-party payments to afford medications to treat and manage their disease symptoms, and this legislation will ensure that all payments whether they come directly out of a pocket or with the help of copay assistance-counts toward out-of-pocket costs of patients. The Medicare Part D Six Protected Classes Policy: requires Part D plan to cover all drugs in six classes: immunosuppressants, antidepressants, antipsychotics, anticonvulsants, antiretrovirals, and antineoplastics. For people living with Parkinson's, most of whom are Medicare beneficiaries, it is essential to have access to wide range of treatment options for antidepressants and antipsychotics. Parkinson's causes non-motor symptoms, including depression and psychosis, and individuals often experience different side effects, reactions, and efficacy based on which medications they take. H.R.4752/S.2379 - the Concentrating High-value Alzheimer's Needs to Get to an End (CHANGE) Act of 2023: a bill to better utilize the existing Welcome to Medicare initial exam and Medicare annual wellness visits to screen, detect, and diagnose Alzheimers and related dementias, including Parkinson's disease dementia, in their earliest stages. Signed Leaders Engaged on Alzheimer's Disease (LEAD) Coalition letter to members of Congress in support of this legislation. H.R.4942/S.655 - the Conrad State 30 and Physician Access Reauthorization Act: a bill to reauthorize the Conrad State 30 program for three years, make several targeted policy improvements, and permit the gradual expansion of the number of waivers granted to each state to address health care provider shortages. Signed American Academy of Neurology letter to member of Congress in support of this legislation. The Medicare Part D Six Protected Classes Policy: requires Part D plan to cover all drugs in six classes: immunosuppressants, antidepressants, antipsychotics, anticonvulsants, antiretrovirals, and antineoplastics. For people living with Parkinson's, most of whom are Medicare beneficiaries, it is essential to have access to wide range of treatment options for antidepressants and antipsychotics. Parkinson's causes non-motor symptoms, including depression and psychosis, and individuals often experience different side effects, reactions, and efficacy based on which medications they take. Partnership for Part D Access coalition congressional meetings and signed coalition letter to CMS in response to Medicare Prescription Payment Plan Part One Guidance in support of continued protection for the six protected classes policy. Signed Medicare Access for Prescription Rx (MAPRx) coalition comment letter in response to Medicare Prescription Payment Plan Part One Guidance. Signed Patient and Provider Advocates for Telehealth coalition comment letter in response to CMS CY 2024 Medicare Physician Fee Schedule (PFS) in support prioritizing the needs of patients by expanding policies that improved access to safe and timely health care via telehealth. Signed Alliance for Aging Research coalition letter in response to Medicare Prescription Payment Plan Part One Guidance in support of proposed beneficiary protections and to provide feedback on implementation considerations for the Medicare Prescription Payment Plan program. H.R.8702/S.4532 - Improving Seniors Timely Access to Care Act: a bill to establish requirements with respect to the use of prior authorization under Medicare Advantage plans. H.R./S.- The HEALTHY Brains Act- draft legislation to create a Centers of Excellence grant program within the National Institute of Health to focus on the intersection between environmental risk factors and neurodegenerative disease. General outreach and support for the establishment of an "Office of Caregiver Health" within the Office of the Secretary at the Department of Health and Human Services.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DREW CHARLES HATTER | — |
| DUSTIN WATSON | — |
| SALLIE JAMES WEART | — |
| MASON ZEAGLER | — |
Medicare/Medicaid MMM
Lobbying to increase prescription drug affordability and accessibility for people living with Parkinson's via Medicare Part D redesign and benefits, including expanding the low-income subsidy (LIS) program, capping out-of-pocket costs, implementing a smoothing mechanism, and streamlining utilization management processes. The Medicare Part D Six Protected Classes Policy: requires Part D plan to cover all drugs in six classes: immunosuppressants, antidepressants, antipsychotics, anticonvulsants, antiretrovirals, and antineoplastics. For people living with Parkinson's, most of whom are Medicare beneficiaries, it is essential to have access to wide range of treatment options for antidepressants and antipsychotics. Parkinson's causes non-motor symptoms, including depression and psychosis, and individuals often experience different side effects, reactions, and efficacy based on which medications they take. Partnership for Part D Access coalition congressional meetings and signed coalition letter to CMS in response to Medicare Prescription Payment Plan Part One Guidance in support of continued protection for the six protected classes policy. Signed Medicare Access for Prescription Rx (MAPRx) coalition comment letter in response to Medicare Prescription Payment Plan Part One Guidance. Signed Patient and Provider Advocates for Telehealth coalition comment letter in response to CMS CY 2024 Medicare Physician Fee Schedule (PFS) in support prioritizing the needs of patients by expanding policies that improved access to safe and timely health care via telehealth. Signed Alliance for Aging Research coalition letter in response to Medicare Prescription Payment Plan Part One Guidance in support of proposed beneficiary protections and to provide feedback on implementation considerations for the Medicare Prescription Payment Plan program. H.R.4752/S.2379 - the Concentrating High-value Alzheimer's Needs to Get to an End (CHANGE) Act of 2023: a bill to better utilize the existing Welcome to Medicare initial exam and Medicare annual wellness visits to screen, detect, and diagnose Alzheimers and related dementias, including Parkinson's disease dementia, in their earliest stages. Signed Leaders Engaged on Alzheimer's Disease (LEAD) Coalition letter to members of Congress in support of this legislation. S. 3109- Alleviating Barriers for Caregivers (ABC) Act- bill to require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs respectively, and for other purposes. Lobbying the Centers for Medicare and Medicaid Services to direct Durable Medical Equipment Medicare Administrative Contractors to provide additional clarification regarding the use of claim modifiers for DME therapies that require administration via an external infusion pump to expedite patient access once new Parkinson's therapies receive approvals from the Food and Drug Administration. S.1544/H.R.1199 - Facilitating Innovative Nuclear Diagnostics Act of 2023: a bill to establish separate payment requirements for diagnostic radiopharmaceuticals, including DaTscans, which can aid in confirming a Parkinson's diagnosis, under the Medicare prospective payment system for hospital outpatient department services. S. 3766/H.R. 7274- Connecting Caregivers to Medicare Act -To amend title XVIII of the Social Security Act to provide for outreach and education to Medicare beneficiaries to simplify access to information for family caregivers through 1-800-MEDICARE, and for other purposes. H.R. 8018/S. 3109- Alleviating Barriers for Caregivers (ABC) Act- bill to require the Administrator of the Centers for Medicare & Medicaid Services and the Commissioner of Social Security to review and simplify the processes, procedures, forms, and communications for family caregivers to assist individuals in establishing eligibility for, enrolling in, and maintaining and utilizing coverage and benefits under the Medicare, Medicaid, CHIP, and Social Security programs respectively, and for other purposes. H.R.8702/S.4532 - Improving Seniors Timely Access to Care Act: a bill to establish requirements with respect to the use of prior authorization under Medicare Advantage plans.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DREW CHARLES HATTER | — |
| DUSTIN WATSON | — |
| MASON ZEAGLER | — |
Environment/Superfund ENV
Advocacy for a ban on Trichloroethylene (TCE). HEALTHY BRAINS Act, legislation to establish a permanent Centers of Excellence program at NIH focused on neurodegenerative diseases and environmental risk factors.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DREW CHARLES HATTER | — |
| TED THOMPSON | — |
| MASON ZEAGLER | — |
Taxation/Internal Revenue Code TAX
S.3702/H.R.7165 -the Credit for Caring Act -To amend the Internal Revenue Code of 1986 to provide a nonrefundable credit for working family caregivers.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DREW CHARLES HATTER | — |
Agriculture AGR
General education on risks of Parkinson's disease, including TCE, paraquat, air pollution, and other chemicals. H.R./S.- The HEALTHY Brains Act- draft legislation to create a Centers of Excellence grant program within the National Institute of Health to focus on the intersection between environmental risk factors and neurodegenerative disease." General education on risks of Parkinson's disease, including TCE, paraquat, air pollution, and other chemicals. Supporting funding for the Neurology Drug Program at FDA through the Labor, Health and Human Services FY 2025 Appropriations bill (not filed). S.269, the Protect Americas Children from Toxic Pesticides Act (PACTPA). General education on triggers of Parkinson's disease, including TCE, paraquat, and other chemicals. S.806, the Healthy H20 Act. Development of a legislative proposal to create a Neurodegenerative disease center of excellence program at NIEHS.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DREW CHARLES HATTER | — |
| SALLIE JAMES WEART | — |
Budget/Appropriations BUD
FY 2025 Appropriations bills including funding requests for Parkinson's research at: The Department of Defense within the FY 2025 Defense Appropriation bill. The National Institute of Health and Centers for Disease Control and Prevention within the FY 2025 Labor, Health and Human Services, Education, and Related Agencies Appropriation bill. The Food and Drug Administration within the FY 2025 Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriation bill. The Department of Veterans Affairs within the FY 2025 Military Construction, Veterans Affairs, and Related Agencies Appropriation bill. Increased funding for NIEHS (no bill introduced). The National Institute of Health and Centers for Disease Control and Prevention within the FY 2025 Labor, Health and Human Services, Education, and Related Agencies Appropriation bills. Funding for the Parkison's Research Program (PRP) under the Department of Defense's Congressionally Directed Medical Research Programs (CDMRP). FY 2025 Appropriations bills with investments relevant to Parkinson's research, including: The Department of Defense within the FY 2025 Defense Appropriation bill. Support funding for the Parkinson's Research Program (PRP) under the Department of Defense's Congressionally Directed Medical Research Programs (CDMRP). The Department of Veterans Affairs within the FY 2025 Military Construction, Veterans Affairs, and Related Agencies Appropriation bill. Support funding for Neurology Centers of Excellence and medical care and research through Veterans Health Administration. The National Institute of Health, ARPA-H and Centers for Disease Control and Prevention within the FY 2025 Labor, Health and Human Services, Education, and Related Agencies Appropriation bill. The Food and Drug Administration within the FY 2025 Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriation bill. General advocacy in support of robust non-defense discretionary investments in Labor, Health and Human Services, Education and Related Agencies appropriations bill for FY 2025.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DREW CHARLES HATTER | — |
| DUSTIN WATSON | — |
| SALLIE JAMES WEART | — |
| MASON ZEAGLER | — |
Pharmacy PHA
Lobbying to improve prescription drug affordability and accessibility for people living with Parkinson's via Medicare Part D redesign and benefits, including expanding the low-income subsidy (LIS) program, capping out-of-pocket costs, implementing a smoothing mechanism, and streamlining utilization management processes. The Medicare Part D Six Protected Classes Policy: requires Part D plan to cover all drugs in six classes: immunosuppressants, antidepressants, antipsychotics, anticonvulsants, antiretrovirals, and antineoplastics. For people living with Parkinson's, most of whom are Medicare beneficiaries, it is essential to have access to wide range of treatment options for antidepressants and antipsychotics. Parkinson's causes non-motor symptoms, including depression and psychosis, and individuals often experience different side effects, reactions, and efficacy based on which medications they take. Partnership for Part D Access coalition congressional meetings and signed coalition letter to CMS in response to Medicare Prescription Payment Plan Part One Guidance in support of continued protection for the six protected classes policy. Signed Medicare Access for Prescription Rx (MAPRx) coalition comment letter in response to Medicare Prescription Payment Plan Part One Guidance. Signed Alliance for Aging Research coalition letter in response to Medicare Prescription Payment Plan Part One Guidance in support of proposed beneficiary protections and to provide feedback on implementation considerations for the Medicare Prescription Payment Plan program. H.R.2360/S.652/S.1339 - Safe Step Act: a bill to require group health plans to provide an exception process for any medication step therapy protocol to help ensure that people living with Parkinson's disease can safely and efficiently access treatments. Led a digital campaign to allow constituents to write their members of Congress in support of this legislation. Lobbying the Centers for Medicare and Medicaid Services to direct Durable Medical Equipment Medicare Administrative Contractors to provide additional clarification regarding the use of claim modifiers for DME therapies that require administration via an external infusion pump to expedite patient access once new Parkinson's therapies receive approvals from the Food and Drug Administration. Lobbying the Centers for Medicare and Medicaid Services to direct Durable Medical Equipment Medicare Administrative Contractors to provide additional clarification regarding the use of claim modifiers for DME therapies that require administration via an external infusion pump to expedite patient access once new Parkinson's therapies receive approvals from the Food and Drug Administration. H.R.2360/S.652/S.1339 - Safe Step Act: a bill to require group health plans to provide an exception process for any medication step therapy protocol to help ensure that people living with Parkinson's disease can safely and efficiently access treatments. Led an digital campaign to allow constituents to write their members of Congress in support of this legislation. H.R.8702/S.4532 - Improving Seniors Timely Access to Care Act: a bill to establish requirements with respect to the use of prior authorization under Medicare Advantage plans. H.R.830/S.1375 - Help Ensure Lower Patient Copays Act: a bill to require health insurance plans to apply certain payments made by, or on behalf of, a plan enrollee toward a plan's cost-sharing requirements. Specifically, plans must apply third-party payments, financial assistance, discounts, product vouchers, and other reductions in out-of-pocket expenses toward the requirements. Many Parkinson's patients rely on such third-party payments to afford medications to treat and manage their disease symptoms, and this legislation will ensure that all payments whether they come directly out of a pocket or with the help of copay assistance-counts toward out-of-pocket costs of patients. S.1544/H.R.1199 - Facilitating Innovative Nuclear Diagnostics Act of 2023: a bill to establish separate payment requirements for diagnostic radiopharmaceuticals, including DaTscans, which can aid in confirming a Parkinson's diagnosis, under the Medicare prospective payment system for hospital outpatient department services.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DUSTIN WATSON | — |
| MASON ZEAGLER | — |
Veterans VET
FY25 Military Construction, Veterans Affairs and Related Agencies Appropriations bill to support increased funding for the VA's Parkinson's Disease Research, Education and Clinical Center. General education regarding the importance of the Department of Defense medical research programs for military service personnel and Veterans living with Parkinson's disease. Inclusion of Parkinson's disease and PD-related diseases as presumptive conditions when military Veterans are exposed to associated toxins. FY24 and FY25 Defense Appropriations bills to support increased funding for DOD Congressionally Directed Medical Research Programs Parkinson's Research Program. H.R.542/S.141 -The Elizabeth Dole Home Care Act- increases access to home care and caregiver programs provided by the Department of Veterans Affairs (VA) and seeks to address VA home health workforce shortages. H.R. 8580 / Senate bill not filed - FY25 Military Construction, Veterans Affairs and Related Agencies Appropriations bill to support increased funding for the VA's Parkinson's Disease Research, Education and Clinical Center as part of Neurology Centers of Excellence. H.R. 8774/ Senate bill not yet filed - FY25 Defense Appropriations bills to support increased funding for DOD Congressionally Directed Medical Research Programs Parkinson's Research Program. General education regarding the importance of the Department of Defense medical research programs for military service personnel and Veterans living with Parkinson's disease. Inclusion of Parkinson's disease and PD-related diseases as presumptive conditions when military Veterans are exposed to associated toxins.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DREW CHARLES HATTER | — |
| DUSTIN WATSON | — |
| SALLIE JAMES WEART | — |
| MASON ZEAGLER | — |
Shown as published by the Senate Office of Public Records and the House Clerk under the Lobbying Disclosure Act. The official filing is the record; open it for the full form.