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 Worked on the introduction of 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 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 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 Endorsed the Telehealth Benefit Expansion for Workers Act 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 Provided comments to the House Ways and Means Committee on the No Surprises Act Joined coalition comments on ACA-plan eligibility for DACA participants Provided comments to the FDA on individualized cell and gene therapy products 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
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| MICHAEL KENNALLY LEWIS | — |
| 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 | — |
| MICHAEL KENNALLY LEWIS | — |
| 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 | — |
| MICHAEL KENNALLY LEWIS | — |
| 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 Worked on the introduction of 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 Submitted comments to the FDA on individualized gene therapies Supported the inclusion of certain provisions within the Pandemic and All-Hazards Preparedness Act reauthorization Endorsed the NIH Clinical Trial Diversity Act Provided comments to the FDA on their proposed rule on lab-developed tests Supported the Ensuring Patient Access to Critical Breakthrough Products Act
| 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 Worked on the introduction of 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 Provided comments to the House Ways and Means Committee on Medicaid unwinding
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| MICHAEL KENNALLY LEWIS | — |
| 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 Worked on the introduction of 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 Advocated for the elimination of junk plans to Congress and supported the Administrations proposal Supported the Ensuring Patient Access to Critical Breakthrough Products Act Joined a letter to President Biden on DACA eligibility for ACA plans Submitted comments to the House Ways and Means Committee on the No Surprises Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Pharmacy PHA
Supported the Protecting Healthcare for All Patients Act Worked on the introduction of 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 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 Ways and Means Committee on the No Surprises Act
| 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 Supported a final rule intended to make lavatories on single aisle aircrafts accessible.
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Education EDU
Supported the RISE Act Supported the Full Funding is the Right IDEA Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Law Enforcement/Crime/Criminal Justice LAW
Joined comments to the DOJ on Proposed Rule on Web Accessibility
| 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.