MUSCULAR DYSTROPHY ASSOCIATION, INC. for MUSCULAR DYSTROPHY ASSOCIATION, INC.
What was lobbied
13 issue areas, each in the filer's own words, with who lobbied on it and where.
Health Issues HCR
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the MINI Act Supported the NIH Clinical Trial Diversity Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Supported robust funding for NCATS Supported robust funding for NIAMS Prepared for the reauthorization of the ACT for ALS Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Aviation/Airlines/Airports AVI
Joined Coalition Comments to President Biden Urging Finalization of Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Rule (11.26.2024) Discussed the implementation of the FAA reauthorization with congressional partners
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Budget/Appropriations BUD
Supported enhanced funding for NCATS, NIAMS, and the entire NIH Supported robust appropriations for the newborn screening program. Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24)
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Medical/Disease Research/Clinical Labs MED
Prepared efforts for reauthorization of the Newborn Screening Saves Lives Reauthorization Act Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the NIH Clinical Trial Diversity Act Supported robust funding for NCATS Prepared for the reauthorization of the ACT for ALS Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
Medicare/Medicaid MMM
Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported the MINI Act Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the Access to Genetic Counseling Services Act Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Insurance INS
Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported the ALS Better Care Act Advocated for the protection of the Medicaid program to the White House and Congress Supported H.R. 4758, Accelerating Kids Access to Care Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Supported the Access to Genetic Counseling Services Act Advocated for provisions addressing problems within the pharmacy benefit manager industry Joined coalition Comments to Congressional Leadership on Potential Changes to Medicaid (12.19.24) Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to House Budget Committee and Senate Budget Committee Leadership on Protection of and Potential Cuts to Medicaid (12.10.24) Joined Amicus Briefs Filed in Response to Challenges to Section 1557 of the Affordable Care Act (ACA) Final Rule from U.S. Department of Health and Human Services: Texas v. Becerra (12.4.24) and Tennessee v. Becerra (11.26.24) Joined Coalition Comments to Congressional Leadership on Diagnostic Medical Equipment (DME) Access (12.2.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Joined Coalition Comments in Response to Proposed Data Collection on Proprietary Guidelines and Medicare Advantage Plan Audit Protocol (11.12.24) Joined Coalition Comments to Support S.5070, the Ensuring Access to Medicaid Buy-In Programs Act (11.12.24) Joined Coalition Comments on Patient Protection and Affordable Care Act; HHS Notice of Benefit and Payment Parameters for 2026; Basic Health Program (11.12.24) Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations (11.6.24) Joined Coalition Comments to UnitedHealthcare on Changes to Prior Authorization Policies for Outpatient Rehabilitation Therapy Services (10.22.24) Joined Coalition Comments to Centers for Medicare & Medicaid Services (CMS) on Service Level Data Collection for Medicare Advantage Plans (10.8.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Pharmacy PHA
Encouraged action on telehealth legislation to the Energy and Commerce Committee Supported H.R. 7623, the Telehealth Modernization Act of 2024 Supported H.R. 7858, Telehealth Enhancement for Mental Health Act and the Telehealth Modernization Act: Supported H.R. 7383, Retaining Access and Restoring Exclusivity (RARE) Act Supported H.R. 7384, Creating Hope Reauthorization Act of 2024 Supported the amended Give Kids a Chance Act Supported the introduction of legislation that increases access to genetic testing and genetic counselors Advocated for provisions addressing problems within the pharmacy benefit manager industry Supported the introduction of legislation that amends the anti-kickback statute to allow companies to cover the costs of traveling to obtain therapies Prepared for the reauthorization of the ACT for ALS Joined an Amicus Brief in American Association of Ancillary Benefits v. Becerra (12.18.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Long-Term Care (LTC) Pharmacies (12.17.24) Joined Coalition Comments to Centers for Medicare and Medicaid Services on Federal Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) Program (12.16.24) Joined Coalition Comments to Congressional Leadership on Partnership to Protect Coverage Healthcare Priorities (12.10.24) Joined Coalition Comments to HHS on Notice of Benefit and Payment Parameters for 2026 (11.12.24) Supported efforts to reform the Inflation Reduction Acts provisions on Medicare negotiation for orphan drugs
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Transportation TRA
Joined Coalition Comments to President Biden Urging Finalization of Ensuring Safe Accommodations for Air Travelers with Disabilities Using Wheelchairs Rule (11.26.2024)
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Education EDU
Supported the RISE Act Supported the Full Funding is the Right IDEA Act Joined Coalition Comments on Access to Assistive Technology, Auxiliary Aids, Services, and Accommodations & Use of Assistive Technology in PreK-16 Schools (11.13.24)
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Retirement RET
Supported the SSI Savings Penalty Elimination Act
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Taxation/Internal Revenue Code TAX
Supported the ENABLE Act, legislation to better amplify the importance of ABLE accounts
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Disaster Planning/Emergencies DIS
Filed Comments to Federal Emergency Management Agency (FEMA) on Proposed Rule to Update FEMA Public Assistance Regulations (10.18.24)
| Lobbyist | Covered position, as disclosed |
|---|---|
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
Immigration IMM
Joined Amici Curiae Brief to U.S. District Court in Deferred Action for Childhood Arrivals Case, Kansas et al. v. U.S. (10.2.24)
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER | — |
| PAUL MELMEYER | — |
| SHANNON WOOD | — |
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.