MUSCULAR DYSTROPHY ASSOCIATION, INC. for MUSCULAR DYSTROPHY ASSOCIATION, INC.
What was lobbied
11 issue areas, each in the filer's own words, with who lobbied on it and where.
Health Issues HCR
Health care issues affecting individuals with neuromuscular disease including therapy development, newborn screening, screening and diagnosis, adequate insurance coverage, and access to care. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Advocated for robust funding of the national newborn screening program. Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for closure of the Medicaid coverage gap and the permanence of the Advanced Premium Tax Credits as part of the Build Back Better Act. Advocated for a robust paid medical leave program. Advocated for increased funding of home and community-based services (HCBS). Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Supported greater appropriations for Consumer Assistance Programs Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Commented on fixing the ACA Family Glitch to the Treasury Department Supported reforms to the HCPCS coding system. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Supported the passage of the Stop the Wait Act (S. 3575 / H.R. 6583) Provided comments to Congress on portions of the Inflation Reduction Act, including the Medicare out-of-pocket cap and smoothing mechanisms. Joined coalition comments on the CY 2023 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies Proposed Rule. Provided policy suggestions to CMS on the annual Notice of Benefit and Payment Parameters. Advocated for greater coverage of seat elevation systems and standing wheelchairs within the Medicare program. Advocated for the Access to Genetic Counselors Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS New | — |
| PAUL MELMEYER | — |
Aviation/Airlines/Airports AVI
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT. Advocated for further accessible air travel reforms within the 2023 FAA reauthorization.
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Budget/Appropriations BUD
Advocated for robust funding for the Newborn Screening programs at the CDC, NIH, and HRSA Advocated for increased funding for National Institutes of Health, Food and Drug Administration, Health Resources and Services Administration, Centers for Disease Control and Prevention, and other health agencies that conduct research on neuromuscular disease and provide services to those with these conditions. Advocated for increased funding of the National Center for Advancing Translational Sciences (NCATS) Advocated for the swift funding and implementation of the ACT for ALS Act (S.1813 and H.R.3537). Advocated for increased funding of home and community-based services (HCBS).
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Medical/Disease Research/Clinical Labs MED
Advocated in favor of robust appropriations funding for the National Institutes of Health, the Food and Drug Administration, the Health Resources and Services Administration, and the Centers for Disease Control and Prevention. Advocated for greater appropriations for the National Center for Advancing Translational Sciences (NCATS) Advocated for greater appropriations for the National Institutes of Health. Advocated for appropriations for HHS, NIH, and FDA to implement the ACT for ALS. Advocated for the passage of the Newborn Screening Saves Lives Reauthorization Act, H.R. 482 / S. 350, to encourage investment in the national newborn screening program in order to detect more neuromuscular conditions early to speed appropriate interventions for patients. Supported the passage of the e Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Advocated for the passage of the RARE Act (S. 4185) as part of the Senate FDA User Fee process. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Advocated for passage of FDA and clinical trial reforms within an end-of-year bill, including accelerated approval reforms, clinical trial diversity advancements, the RARE Act, reauthorization of the Orphan Product Grants Program, and more.
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Medicare/Medicaid MMM
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Supported additional coverage expansions by advocating that certain policies, such as permanent advanced premium tax credits and the closing of the Medicaid gap, are added to the Build Back Better Act. Supported substantially increased funding to HCBS 1915 waivers. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for the passage of the HCBS Access Act Provided comments to Congress on portions of the Inflation Reduction Act, including the Medicare out-of-pocket cap and smoothing mechanisms. Joined coalition comments on the CY 2023 Payment Policies Under the Physician Fee Schedule and Other Changes to Part B Payment Policies Proposed Rule. Provided policy suggestions to CMS on the annual Notice of Benefit and Payment Parameters. Advocated for greater coverage of seat elevation systems and standing wheelchairs within the Medicare program. Advocated for the Access to Genetic Counselors Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Insurance INS
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. Advocated for permanent continuance of the advanced premium tax credits. Advocated for access to healthcare via telemedicine/telehealth throughout and after the COVID-19 public health emergency. Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Supported passage of the Ending the Diagnostic Odyssey Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Labor Issues/Antitrust/Workplace LBR
Advocated for specific regulatory and administrative approaches to implementing the No Surprises Act. Advocated for the Transformation to Competitive Integrated Employment Act (H.R.2373 and S.3238) Advocated for the passage of the Disability Employment Incentive Act. Advocated for a robust paid medical leave program.
| Lobbyist | Covered position, as disclosed |
|---|---|
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Pharmacy PHA
Advocated for funding and implementation of the ACT for ALS, a law that should accelerate development of treatments for individuals with ALS and other neuromuscular diseases. Advocated for the passage of the Diversifying Investigations Via Equitable Research Studies for Everyone (DIVERSE) Trials Act (H.R. 5030/S. 2706) Supported passage of the Ending the Diagnostic Odyssey Act Advocated for the passage of the Accelerating Kids Access to Care Act Advocated for certain provisions within the Cures 2.0 Legislation (H.R.6000) Support the passage of the Precision Medicine for Children Act Advocated for reforms to the FDA Accelerated Approval program as part of the FDA user fee reauthorizations Advocated for the creation of an FDA regulatory pathway for diagnostics, including lab-developed tests and invitro diagnostics. Advocated for passage of FDA and clinical trial reforms within an end-of-year bill, including accelerated approval reforms, clinical trial diversity advancements, the RARE Act, reauthorization of the Orphan Product Grants Program, and more.
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| PAUL MELMEYER | — |
Taxation/Internal Revenue Code TAX
Advocated for permanency of the Advanced Premium Tax Credit for accessing quality, affordable health insurance. Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. Advocated for the permanent adoption of the changes to the Earned Income Tax Credit (EITC) and the Child Tax Credit (CTC). Advocated for the passage of the SSI Savings Penalty Elimination Act (S. 4102) Advocated for the enactment of the ABLE Age Adjustment Act Advocated for the passage of the Supplemental Security Income Restoration Act (S. 2065 / HR 3763)
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Transportation TRA
Advocated for the passage of the Air Carrier Access Amendments Act (S.642, H.R.1893) Advocated for further air travel access improvements for individuals with disabilities through regulation by FAA and DoT.
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Education EDU
Provided comments on the Student Assistance General Provisions, Federal Perkins Loan Program, Federal Family Education Loan Program, and William D. Ford Federal Direct Loan Program to the Department of Education Provided comments on the e Notice of Proposed Rulemaking regarding Nondiscrimination on the Basis of Sex in Education Programs or Activities Receiving Federal Financial Assistance and proposed amendments to regulations implementing Title IX of the Education Amendments of 1972 to the Department of Education
| Lobbyist | Covered position, as disclosed |
|---|---|
| MICHAEL KENNALLY LEWIS | — |
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.