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.
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 end-of-year omnibus legislation. 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 | — |
| 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 end-of-year omnibus package 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 | — |
Labor Issues/Antitrust/Workplace LBR
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.
| Lobbyist | Covered position, as disclosed |
|---|---|
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
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 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 end-of-year omnibus package. 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 end-of-year omnibus package. 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) Advocated for the Access to Genetic Counselors Act Provided recommendations to the Department of Health and Human Services on the implementation of section 1557 of the Affordable Care Act. Applauded the Department of Health and Human Services in their closing of the family glitch within the Affordable Care Act. Advocated to the Centers for Medicare and Medicaid Services on Medicaid access and the COVID-19 public health emergency Called for passage of the Preserving Patient Access to Home Infusion Act (S. 2652/H.R. 5067) Provided comments to CMS on ensuring equity in accessing health care. Provided comments to the Department of Health and Human Services on how best to streamline eligibility and enrollment within the Medicaid and CHIP programs. Called for recipients of the Deferred Action for Childhood Arrivals program to access Federal health programs and offerings. Provided comments to the CMS on the implementation of the No Surprises Act. Called for greater funding of the National Center for Advancing Translational Sciences (NCATS) Called for the passage of the Medicare Orthotic & Prosthetic Patient-Centered Care Act Provided comments to CMS on National Directory of Healthcare Providers and Services
| 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 |
|---|---|
| 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). Advocated for greater funding amounts going towards Department of Education programs focused on educational offerings for those with disabilities. Advocated for additional funding for the Social Security Administration to implement programs for those with disabilities
| 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. 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 Advocated for the Access to Genetic Counselors Act Called for the passage of the Medicare Orthotic & Prosthetic Patient-Centered Care Act Provided comments to the Department of Health and Human Services on how best to streamline eligibility and enrollment within the Medicaid and CHIP programs. Advocated to the Centers for Medicare and Medicaid Services on Medicaid access and the COVID-19 public health emergency
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| PAUL MELMEYER | — |
Insurance INS
Advocated for adequate, affordable, accessible health coverage for individuals with neuromuscular conditions. 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 Provided comments to CMS on National Directory of Healthcare Providers and Services Provided comments to the CMS on the implementation of the No Surprises Act. Called for passage of the Preserving Patient Access to Home Infusion Act (S. 2652/H.R. 5067) Applauded the Department of Health and Human Services in their closing of the family glitch within the Affordable Care Act. Provided recommendations to the Department of Health and Human Services on the implementation of section 1557 of the Affordable Care Act.
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| PAUL MELMEYER | — |
Taxation/Internal Revenue Code TAX
Supported the Disability Employment Incentive Act, legislation that doubles incentives for businesses to hire individuals with disabilities. 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. Advocated for accessible air travel priorities to be included in the 2023 FAA reauthorization.
| Lobbyist | Covered position, as disclosed |
|---|---|
| JOEL CARTNER New | — |
| MICHAEL KENNALLY LEWIS | — |
| PAUL MELMEYER | — |
Education EDU
Advocated for greater funding amounts going towards Department of Education programs focused on educational offerings for those with disabilities.
| 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.