THE ALS ASSOCIATION for THE ALS ASSOCIATION
What was lobbied
7 issue areas, each in the filer's own words, with who lobbied on it and where.
Budget/Appropriations BUD
Further Consolidated Appropriations Act of 2024 (HR 2882) & Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations (S. 2624) --Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $150 million for ALS research at NIH in fiscal year 2024 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials. Requested at least $75 000,000 to implement the expanded access program established by the ACT for ALS Act (P.L. 117-79). Requested at least $15 million to continue CDCs National ALS Registry and Biorepository in fiscal year 2024 to help identify risk factors for ALS to reduce the number of new cases, connect patients with clinical trials, conduct surveillance of incidence and prevalence and biospecimens, and support research of ALS prevention in the military. Requested the House and Senate Appropriations Defense Subcommittee provide at least $80 million for the ALS Research Program in fiscal year 2024 to allow the program to build on a solid foundation of promising preclinical research to increase the number of ALS clinical trials by funding its own early phase trials. Consolidated Appropriations Act of 2024 (HR 4366) . Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations (H.R. 4368) --Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $25 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2024 to fund P.L. 117-79 the FDA Rare Neurodegenerative Disease Grant Program which is authorized to provide ALS research grants. Continuing Appropriations and Extensions Act, 2025 (H.R.9747) - Provisions related to continuing resolution funding for public health programs, veterans administration, and the Food and Drug Administration. Conversations surrounding Appropriations for Fiscal Year 2025
| Lobbyist | Covered position, as disclosed |
|---|---|
| DANIEL NOAH CRAMER | — |
| DENISE DEMICHELE-BAILIN | — |
| KATHLEEN SHEEHAN | — |
Health Issues HCR
Discussions around improving access, coverage, and prior authorization for treatments and drugs under Medicare, Medicare Advantage, and private insurance. Seniors Timely Access to Care (S.4532 / H.R. 8702) - CONNECT for Health Act of 2023 (H.R.4189/S.2016) - provisions related to permanent telehealth services in Medicare and interstate telehealth services. Telehealth Modernization Act (H.R. 7623 / S. 3967) - All Provisions. Protecting Health Care for All Patients Act of 2023 (H.R. 485) - provisions to ban the usage of quality adjusted life years in public insurance programs. HELP Copays Act (H.R.830 / S.1375) -- Provisions related to health insurance plans requirement to apply payments made by or on behalf of plan enrollees toward a plan's cost-sharing requirements, i.e. a ban on copay-accumulator adjust programs. BENEFIT Act of 2023 (H.R.1092/S.526) - Provisions related to increases in patient and advocate role in FDA benefit-risk framework for drug approval through leveraging patient experience, PFDD, and related data. Connecting Caregivers to Medicare Act of 2024 (H.R. 7274/S. 3766) - All provisions. Ensuring Patient Access to Critical Breakthrough Products Act (H.R. 1691) - All provisions HEALTHY BRAINS Act (H.R. 9233) - All Provisions relating to creating a research grant program to study environmental toxin exposure, its impact on the development of neurodegenerative diseases like ALS, and developing strategies to prevent, treat, and slow the progression of neurodegenerative diseases.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DANIEL NOAH CRAMER | — |
| DENISE DEMICHELE-BAILIN | — |
| KATHLEEN SHEEHAN | — |
Medicare/Medicaid MMM
ALS Better Care Act (H.R 5663/S.3258) - Discussion around supplemental payment to designated ALS clinics that provide multidisciplinary services to people living with ALS. HELP Copays Act (H.R.830 / S.1375) -- Provisions related to health insurance plans requirement to apply payments made by or on behalf of plan enrollees toward a plan's cost-sharing requirements, i.e. a ban on copay-accumulator adjust programs. Access to Genetic Counselor Services Act of 2023 (H.R.3876) - Provisions related to modernization of Medicare to keep pace with generic and genomic medicine innovation. Improves the ability for practitioners to refer patients to genetic counselors, Provides 85% reimbursement of physicians fee schedule amount for service. Discussion around Telehealth permanence (no bill number) - provisions related to permanent telehealth services in Medicare and interstate telehealth services. Close the Medigap Act (HR 35) -Discussion around Medigap guarantee issue provisions for people living with ALS aged under 65. Alleviating Barriers for Caregivers (ABC) Act (S.3109/H.R.8018) - All provisions. Connecting Caregivers to Medicare Act of 2024 (H.R. 7274/S. 3766) - All provisions
| Lobbyist | Covered position, as disclosed |
|---|---|
| DANIEL NOAH CRAMER | — |
| DENISE DEMICHELE-BAILIN | — |
Pharmacy PHA
Promising Pathways Act (S.1906) - Discussion around a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS and coverage for these drugs. BENEFIT Act of 2023 (H.R.1092/S.526) - Provisions related to increases in patient and advocate role in FDA benefit-risk framework for drug approval through leveraging patient experience, PFDD, and related data.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DANIEL NOAH CRAMER | — |
| DENISE DEMICHELE-BAILIN | — |
| KATHLEEN SHEEHAN | — |
Veterans VET
Justice for ALS Veterans Act (H.R 3790 / S. 1590) -- All Provisions, including those extending Dependency and Indemnity Compensation payments to surviving spouses of veterans who die from ALS, regardless of how long a veteran had ALS prior to death. Elizabeth Dole Home Care Act of 2023 (H.R. 542 / S.141) - would raise the cap on the Veterans Administrations payments for home care from 65% to 100% and would expand VA home care programs.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DANIEL NOAH CRAMER | — |
| DENISE DEMICHELE-BAILIN | — |
Taxation/Internal Revenue Code TAX
Credit for Caring Act of 2024 (H.R.7165/S. 3702) - All provisions. Clinical Trial Tax Credit (H.R. 7418) - All provisions.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DANIEL NOAH CRAMER | — |
| DENISE DEMICHELE-BAILIN | — |
Retirement RET
Caregiver Credit Act (H.R3729 / S.1211) - All provisions, including those which give individuals serving as caregivers of dependent relatives with deemed wages for up to five (5) years of such service.
| Lobbyist | Covered position, as disclosed |
|---|---|
| DANIEL NOAH CRAMER | — |
| DENISE DEMICHELE-BAILIN | — |
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.