MUSCULAR DYSTROPHY ASSOCIATION, INC. for MUSCULAR DYSTROPHY ASSOCIATION, INC.
What was lobbied
10 issue areas, each in the filer's own words, with who lobbied on it and where.
Health Issues HCR
Advocated for the protection of the Medicaid program to the White House and Congress Supported enhanced funding for NCATS Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Worked towards the introduction of the Right Drug, Right Dose Act Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported the Access to Genetic Counseling Services Act Supported robust appropriations for the newborn screening program. Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Supported the passage of the Creating Hope Reauthorization Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Medicare Orthotics & Prosthetics Patient-Centered Care Act Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Supported the NIH Clinical Trial Diversity Act Supported changes to the Inflation Reduction Act pertaining to rare disease therapies and timelines for negotiation Supported the Ensuring Patient Access to Critical Breakthrough Products Act of 2023 Supported the Benefit Act Joined coalition comments to CMS on the Proposed Rule on Medicare Advantage and Medicare Part D Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on Medicaid unwinding Joined coalition comments to DOJ on the Proposed Rule on Accessible MDE Supported the Ensuring Medicaid Continuity for Children in Foster Care Act Joined coalition comments supporting the proposed rescission of the AHP rule Joined coalition comments on Florida Childrens Health Insurance Program Eligibility Extension Supported the passage of the Accelerating Kids Access to Care Act Supported the passage of the Maintaining Investments in New Innovation (MINI) Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Restore Protections for Dialysis Patients Act Provided comments to the House Education and Workforce Committee on their ERISA RFI Joined coalition comments on DOJ Complaint Data Reports
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Transportation TRA
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Education EDU
Supported the RISE Act Supported the Full Funding is the Right IDEA Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
Aviation/Airlines/Airports AVI
Supported accessible air travel reforms to be included in the FAA Reauthorization Supported the MOBILE Act, legislation to make air travel more accessible Supported the Air Carrier Access Amendments Act, legislation to make air travel more accessible Supported the EVAC Act, legislation to ensure evacuations of airplanes considers those with disabilities Supported accessibility provisions within the Securing Growth and Robust Leadership in American Aviation Act of 2023 Advocated for stronger protections of individuals with disabilities when engaging with TSA
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Budget/Appropriations BUD
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Medical/Disease Research/Clinical Labs MED
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported the nomination of Duchenne muscular dystrophy in front of HRSAs ACHDNC Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported robust appropriations for the newborn screening program. Supported funding of ALS research, expanded access, and more Advocated for the passage of the RARE ACT Continued efforts to reintroduce the Newborn Screening Saves Lives Reauthorization Act Endorsed the NIH Clinical Trial Diversity Act Supported the Ensuring Patient Access to Critical Breakthrough Products Act Provided comments to the House Education and Workforce Committee on their ERISA RFI Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Medicare/Medicaid MMM
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Supported the Restore Protections for Dialysis Patients Act Joined coalition comments on Florida Childrens Health Insurance Program Eligibility Extension Supported the passage of the Accelerating Kids Access to Care Act Supported the passage of the Maintaining Investments in New Innovation (MINI) Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Ensuring Medicaid Continuity for Children in Foster Care Act Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on Medicaid unwinding Joined coalition comments to CMS on the Proposed Rule on Medicare Advantage and Medicare Part D
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Law Enforcement/Crime/Criminal Justice LAW
Joined coalition comments on DOJ Complaint Data Reports Joined coalition comments to DOJ on the Proposed Rule on Accessible MDE
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Insurance INS
Advocated for the protection of the Medicaid program to the White House and Congress Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Worked towards the introduction of the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Advocated for provisions addressing problems within the pharmacy benefit manager industry Urged CMS to tread carefully with the Medicaid unwinding Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Ensuring Patient Access to Critical Breakthrough Products Act Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported the Access to Genetic Counseling Services Act Joined coalition comments to CMS on the Proposed Rule on Medicare Advantage and Medicare Part D Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Joined coalition comments to HHS on Medicaid unwinding Supported the Ensuring Medicaid Continuity for Children in Foster Care Act Joined coalition comments supporting the proposed rescission of the AHP rule Joined coalition comments on Florida Childrens Health Insurance Program Eligibility Extension Supported the passage of the Accelerating Kids Access to Care Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Restore Protections for Dialysis Patients Act Provided comments to the House Education and Workforce Committee on their ERISA RFI
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Pharmacy PHA
Supported the Protecting Healthcare for All Patients Act Supported the ALS Better Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Worked towards the introduction of the Right Drug, Right Dose Act Supported efforts to strengthen anti-discrimination provisions in rulemaking within healthcare settings Supported funding of ALS research, expanded access, and more Advocated for provisions addressing problems within the pharmacy benefit manager industry Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported changes to the Inflation Reduction Act pertaining to rare disease therapeutic eligibility for Medicare negotiation Provided comments to the House Education and Workforce Committee on their ERISA RFI Supported the passage of the Maintaining Investments in New Innovation (MINI) Act Joined coalition comments to CMS on the MAPRx Part D Redesign Guidance Supported the Restore Protections for Dialysis Patients Act Joined coalition comments to HHS on the HHS Notice of 2025 Benefit and Payment Parameters Provided a response to Senate HELP and Sen. Cassidy RFI on Gene and Cell Therapies Supported the Benefit Act Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported the Access to Genetic Counseling Services Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
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.