FAA Reauthorization (H.R.3935 / S.1939)- Provisions related to travel protections for persons with disability. Including provisions Air Carrier Access Amendments Act, EVAC Act, and MOBILE Act.
HR 2882, Further Consolidated Appropriations Act of 2024 - 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.
HR 4366, the Consolidated Appropriations Act of 2024. 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.
Conversations surrounding Appropriations for Fiscal Year 2025
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 2025 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.
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.
Department of Defense Appropriations Act (H.R. 4365) -- 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.
Discussion around improving the prior authorization process for treatments and drugs under Medicare, Medicare Advantage, and private insurance.
CONNECT for Health Act of 2023(H.R.4189/S.2016) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
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.
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.
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.
H.R. 7274/S. 3766 - Connecting Caregivers to Medicare Act of 2024 - All provisions.
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.
Promising Pathways Act (H.R. 4408/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.
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.
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.
H.R.7165/S. 3702 - Credit for Caring Act of 2024 - All provisions
Duration: January 1, 2018
to
present
General Issues: Aviation/Aircraft/Airlines , Budget/Appropriations , Health Issues , Medicare/Medicaid , Pharmacy , Veterans , Welfare , Taxation/Internal Revenue Code , Family Issues/Abortion/Adoption , Civil Rights/Civil Liberties , Medical/Disease Research/Clinical Labs
Spending: about $588,003 (But it's complicated. Here's why.)
It can be tricky to figure out how much an organization spent on a particular lobbying engagement. The law only requires lobbyists to report the amount they were paid for federal lobbying each quarter rounded to the nearest $10,000—and if it's less than $3,000 in a given quarter (or less than $13,000 for organizations with in-house lobbyists), they don't have to disclose it at all. Plus, some organizations include spending that doesn’t belong in the report—for instance, money spent lobbying state governments or other legal work.
Agencies lobbied since 2018: U.S. Senate, House of Representatives, Centers For Medicare and Medicaid Services (CMS), Food & Drug Administration (FDA)
Lobbyists
Lobbyists named here were listed on a filing related to this lobbying engagement. They may not be working on it now. Occasionally, a single lobbyist whose name is spelled two different ways on filings may be represented twice here.
Disclosures Filed
Once a lobbying engagement begins, the lobbyist or firm is required to file updates four times a year. Those updates sometimes change which lobbyists are involved or add new issues being discussed. When lobbyists stop working for a client, the firm is also supposed to file a report disclosing the end of the relationship.
1st Quarter, 2024
In Q1, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on May 7.
Original Filing: 301578268.xml
Lobbying Issues
FAA Reauthorization (H.R.3935 / S.1939)- Provisions related to travel protections for persons with disability. Including provisions Air Carrier Access Amendments Act, EVAC Act, and MOBILE Act.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
Lobbying Issues
HR 2882, Further Consolidated Appropriations Act of 2024 - 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.
HR 4366, the Consolidated Appropriations Act of 2024. 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.
Conversations surrounding Appropriations for Fiscal Year 2025
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 2025 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.
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.
Department of Defense Appropriations Act (H.R. 4365) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Discussion around improving the prior authorization process for treatments and drugs under Medicare, Medicare Advantage, and private insurance.
CONNECT for Health Act of 2023(H.R.4189/S.2016) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
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.
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.
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.
H.R. 7274/S. 3766 - Connecting Caregivers to Medicare Act of 2024 - All provisions.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Promising Pathways Act (H.R. 4408/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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
H.R.7165/S. 3702 - Credit for Caring Act of 2024 - All provisions
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
4th Quarter, 2023
In Q4, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Jan. 19.
Original Filing: 301529981.xml
Lobbying Issues
FAA Reauthorization (H.R.3935 / S.1939)- Provisions related to travel protections for persons with disability. Including provisions Air Carrier Access Amendments Act, EVAC Act, and MOBILE Act.
Air Carrier Access Amendments Act (H.R.1267 / S.545) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Emergency Vacating of Aircraft Cabin (EVAC) Act (H.R.3792/ S.1765) - Require FAA to establish evacuation standards for aircrafts taking inconsideration the needs of people with disabilities who need to exit an aircraft in an emergency.
MOBILE ACT (H.R.3802 / S.1459) - Provisions related to proper stowage of power wheelchair, publishing dimensions of cargo holds on airlines, accommodating passengers in wheelchairs in the cabin, assessing economic and financial feasibility of accommodation.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
Lobbying Issues
Conversations surrounding Appropriations for Fiscal Year 2024
- 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.
- 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.
- Department of Defense Appropriations Act (H.R. 4365) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Discussion around improving the prior authorization process for treatments and drugs under Medicare, Medicare Advantage, and private insurance.
CONNECT for health Act of 2023(H.R.4189/S.2016) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
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.
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.
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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 (H.R. 35) -Discussion around Medigap guarantee issue provisions for people living with ALS aged under 65.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Promising Pathways Act (H.R. 4408/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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
3rd Quarter, 2023
In Q3, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Oct. 20, 2023.
Original Filing: 301510086.xml
Lobbying Issues
FAA Reauthorization (H.R.3935 / S.1939)- Provisions related to travel protections for persons with disability. Including provisions Air Carrier Access Amendments Act, EVAC Act, and MOBILE Act.
Air Carrier Access Amendments Act (H.R.1267 / S.545) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Emergency Vacating of Aircraft Cabin (EVAC) Act (H.R.3792/ S.1765) - Require FAA to establish evacuation standards for aircrafts taking inconsideration the needs of people with disabilities who need to exit an aircraft in an emergency.
MOBILE ACT (H.R.3802 / S.1459) - Provisions related to proper stowage of power wheelchair, publishing dimensions of cargo holds on airlines, accommodating passengers in wheelchairs in the cabin, assessing economic and financial feasibility of accommodation.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
Lobbying Issues
Conversations surrounding Appropriations for Fiscal Year 2024
- 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.
- 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.
- Department of Defense Appropriations Act (H.R. 4365) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
CONNECT for health Act of 2023(H.R.4189/S.2016) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
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.
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.
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.
(No bill number) - Discussion Surrounding improving the prior authorization process in Medicare, Medicare Advantage, and private / individual insurance marketplaces.
Agencies Lobbied
U.S. Senate
Lobbying Issues
ALS Better Care Act (H.R 5663) - 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.
MMM - CONNECT for health Act of 2023(H.R.4189/S.2016) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
2nd Quarter, 2023
In Q2, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on July 19, 2023.
Original Filing: 301481363.xml
Lobbying Issues
Conversations surrounding Appropriations for Fiscal Year 2024
Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations (no bill number) --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.
Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations (no bill number) --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.
Department of Defense Appropriations Act (no bill number) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
ALS Better Care Act (Draft Legislation. no bill number) - Provides supplemental payment to designated ALS clinics that provide multidisciplinary services to people living with ALS.
Discussion around Telehealth permanence (no bill number) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
(No bill number) - Discussion Surrounding improving the prior authorization process in Medicare, Medicare Advantage, and private / individual insurance marketplaces.
Discussion around Telehealth permanence (no bill number) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
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.
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.
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Air Carrier Access Amendments Act (H.R.1267 / S.545) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Emergency Vacating of Aircraft Cabin (EVAC) Act (H.R.3792/ S.1765) - Require FAA to establish evacuation standards for aircrafts taking inconsideration the needs of people with disabilities who need to exit an aircraft in an emergency.
MOBILE ACT (H.R.3802 / S.1459) - Provisions related to proper stowage of power wheelchair, publishing dimensions of cargo holds on airlines, accommodating passengers in wheelchairs in the cabin, assessing economic and financial feasibility of accommodation.
FAA Reauthorization - Provisions related to travel protections for persons with disability. Including provisions Air Carrier Access Amendments Act, EVAC Act, and MOBILE Act.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
1st Quarter, 2023
In Q1, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on April 20, 2023.
Original Filing: 301464780.xml
Lobbying Issues
Conversations surrounding Appropriations for Fiscal Year 2024
Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations (no bill number) --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 the 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.
Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations (no bill number) --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.
Department of Defense Appropriations Act (no bill number) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
ALS Better Care Act (Draft Legislation. no bill number) - Provides supplemental payment to designated ALS clinics that provide multidisciplinary services to people living with ALS.
Discussion around Telehealth permanence (no bill number) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
Discussion around Telehealth permanence (no bill number) - provisions related to permanent telehealth services in Medicare and interstate telehealth services.
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.
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.
HELP Copays Act (H.R.830) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Promising Pathways Act (draft legislation. no bill number) - would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Justice for ALS Veterans Act (draft legislation. no bill number) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Air Carrier Access Amendments Act (H.R.1267/S.545) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Emergency Vacating of Aircraft Cabin (EVAC) Act (draft legislation. No bill number) - Require FAA to establish evacuation standards for aircrafts taking inconsideration the needs of people with disabilities who need to exit an aircraft in an emergency.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
4th Quarter, 2022
In Q4, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Feb. 21, 2023.
Original Filing: 301446904.xml
Lobbying Issues
-Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2023 (H.R.8295) --Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $135 million for ALS research at NIH in fiscal year 2023 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 $10 million to continue the National ALS Registry and Biorepository in fiscal year 2023 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 collect biospecimens that will lead to a better understanding of who may develop ALS. Requested funding to establish the Advanced Research Projects Agency for Health to fund new research into Amyotrophic Lateral Sclerosis.
- Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act, 2023 (H.R.8239) --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 2023 to to implement P.L. 117-79 to establish the FDA Rare Neurodegenerative Disease Grant Program which is authorized to provide grants for clinical trials for ALS and other neurodegenerative diseases.-
- Department of Defense Appropriations Act, 2023 (H.R.8236) -- Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2023 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 (H.R.2617) -- supported provisions in legislation related to ALS research funding directed towards NIH, FDA, CDC, and DOD.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Inflation Reduction Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; the establishment Advanced Research Projects Agency for Health (ARPA-H); provisions related to extending marketplace subsidies under the Patient Protection and Affordable Care Act; and provisions related to an out-of-pocket maximum for Medicare beneficiaries' prescription drugs.
Advancing Telehealth Beyond COVID-19 Act of 2021 (H.R. 4040) -- Provisions related to extension of Medicare flexibilities including originating site, allowance of occupational and physical therapists, speech-language pathologists, and audiologists to continue to provide services, allowance for qualified health centers and rural health clinics to serve as a distant site, behavioral services to continue to be provided via audio-only technology, and allowance of hospice physicians and nurse practitioners to complete patient recertification via telehealth. Additional provisions related to delay of in-person evaluation requirements for mental health services until January 1, 2025 or end of emergency period.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903 / S. 1512) Provisions related to the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and waive coverage restrictions during national emergencies.
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708 / S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e. coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory may investigate and take disciplinary actions against a processional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
-Medicare Payment Reform for People with ALS (H.R.9638) Provides supplemental payment to designated ALS clinics that provide multidisciplinary services to people living with ALS.
-Seniors Timely Access to Care Act (H.R.3173 / S.3018) -- Requires streamlined prior authorization process under Medicare Advantage Plans.
Agencies Lobbied
U.S. House of Representatives
Lobbying Issues
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
-CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
- Inflation Reduction Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; the establishment Advanced Research Projects Agency for Health (ARPA-H); provisions related to extending marketplace subsidies under the Patient Protection and Affordable Care Act; and provisions related to an out-of-pocket maximum for Medicare beneficiaries' prescription drugs.
- Telehealth Modernization Act (H.R. 1332/S. 368) -- Provisions related to the modification of requirements relating to coverage of telehealth services under Medicare, including certain flexibilities that were initially authorized during the public health emergency relating to COVID-19.
- HELP Copays Act (H.R.5801) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
- CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
-Food and Drug Amendments of 2022 (H.R. 7667) / PDUFA VII-- provisions related to accelerated approval program, clinical trial diversity, novel clinical trial design and modeling, improving accountability and transparency of the FDA.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Justice for ALS Veterans Act (H.R. 5607 / S.3483) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Inflation Reduction Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave.
Agencies Lobbied
U.S. Senate
Type of Issue
Family Issues/Abortion/Adoption
Lobbying Issues
Air Carrier Access Amendments Act (H.R. 1619 / S. 642) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Emergency Vacating of Aircraft Cabin (EVAC) Act (H.R.9467 / S.5235) - Require FAA to establish evacuation standards for aircrafts taking in consideration the needs of people with disabilities who need to exit an aircraft in an emergency.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
Lobbying Issues
- Air Carrier Access Amendments Act (H.R. 1619 / S. 642) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
- Disability Employment Incentive Act (H.R. 3765 / S. 630) - Provisions related to adding SSDI recipients to qualified Work Opportunity Tax Credits, doubling and extending the Work Opportunity Tax Credit, doubling the Disability Access Expenditures Tax Credit, and increasing the Architectural and Transportation Barrier Tax Credit.
Agencies Lobbied
U.S. Senate
Type of Issue
Civil Rights/Civil Liberties
3rd Quarter, 2022
In Q3, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Oct. 20, 2022.
Original Filing: 301415389.xml
Lobbying Issues
-Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2023 (H.R.8295) --Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $135 million for ALS research at NIH in fiscal year 2023 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 $10 million to continue the National ALS Registry and Biorepository in fiscal year 2023 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 collect biospecimens that will lead to a better understanding of who may develop ALS. Requested funding to establish the Advanced Research Projects Agency for Health to fund new research into Amyotrophic Lateral Sclerosis.
- Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act, 2023 (H.R.8239) --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 2023 to to implement P.L. 117-79 to establish the FDA Rare Neurodegenerative Disease Grant Program which is authorized to provide grants for clinical trials for ALS and other neurodegenerative diseases.-
- Department of Defense Appropriations Act, 2023 (H.R.8236) -- Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2023 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Inflation Reduction Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; the establishment Advanced Research Projects Agency for Health (ARPA-H); provisions related to extending marketplace subsidies under the Patient Protection and Affordable Care Act; and provisions related to an out-of-pocket maximum for Medicare beneficiaries' prescription drugs.
Advancing Telehealth Beyond COVID-19 Act of 2021 (H.R. 4040) -- Provisions related to extension of Medicare flexibilities including originating site, allowance of occupational and physical therapists, speech-language pathologists, and audiologists to continue to provide services, allowance for qualified health centers and rural health clinics to serve as a distant site, behavioral services to continue to be provided via audio-only technology, and allowance of hospice physicians and nurse practitioners to complete patient recertification via telehealth. Additional provisions related to delay of in-person evaluation requirements for mental health services until January 1, 2025 or end of emergency period.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903 / S. 1512) Provisions related to the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and waive coverage restrictions during national emergencies.
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708 / S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e. coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory may investigate and take disciplinary actions against a processional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
-CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
- Inflation Reduction Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; the establishment Advanced Research Projects Agency for Health (ARPA-H); provisions related to extending marketplace subsidies under the Patient Protection and Affordable Care Act; and provisions related to an out-of-pocket maximum for Medicare beneficiaries' prescription drugs.
- Telehealth Modernization Act (H.R. 1332/S. 368) -- Provisions related to the modification of requirements relating to coverage of telehealth services under Medicare, including certain flexibilities that were initially authorized during the public health emergency relating to COVID-19.
- HELP Copays Act (H.R.5801) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
- CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
-Food and Drug Amendments of 2022 (H.R. 7667) / PDUFA VII-- provisions related to accelerated approval program, clinical trial diversity, novel clinical trial design and modeling, improving accountability and transparency of the FDA.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Justice for ALS Veterans Act (H.R. 5607 / S.3483) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Inflation Reduction Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave.
Agencies Lobbied
U.S. Senate
Type of Issue
Family Issues/Abortion/Adoption
Lobbying Issues
Air Carrier Access Amendments Act (H.R. 1619 / S. 642) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
Lobbying Issues
- Air Carrier Access Amendments Act (H.R. 1619 / S. 642) -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
- Disability Employment Incentive Act (H.R. 3765 / S. 630) - Provisions related to adding SSDI recipients to qualified Work Opportunity Tax Credits, doubling and extending the Work Opportunity Tax Credit, doubling the Disability Access Expenditures Tax Credit, and increasing the Architectural and Transportation Barrier Tax Credit.
Agencies Lobbied
U.S. Senate
Type of Issue
Civil Rights/Civil Liberties
2nd Quarter, 2022
In Q2, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on July 20, 2022.
Original Filing: 301390127.xml
Lobbying Issues
-Departments of Labor, Health and Human Services, and Education, and Related Agencies Appropriations Act, 2023 (H.R.8295) --Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $135 million for ALS research at NIH in fiscal year 2023 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 $10 million to continue the National ALS Registry and Biorepository in fiscal year 2023 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 collect biospecimens that will lead to a better understanding of who may develop ALS. Requested funding to establish the Advanced Research Projects Agency for Health to fund new research into Amyotrophic Lateral Sclerosis.
- Agriculture, Rural Development, Food and Drug Administration, and Related Agencies Appropriations Act, 2023 (H.R.8239) --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 2023 to to implement P.L. 117-79 to establish the FDA Rare Neurodegenerative Disease Grant Program which is authorized to provide grants for clinical trials for ALS and other neurodegenerative diseases.-
- Department of Defense Appropriations Act, 2023 (H.R.8236) -- Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2023 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/ S. 1512) expands coverage of telehealth services under Medicare. Among other things, the bill allows the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and allows the CMS to generally waive coverage restrictions during national emergencies. Additionally, the Medicare Payment Advisory Commission must report on information relating to the access of Medicare beneficiaries to telehealth services at home. The Center for Medicare and Medicaid Innovation may also test alternative payment models relating to expanded telehealth services.
-CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
-Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; the establishment Advanced Research Projects Agency for Health (ARPA-H); and provisions related to an out-of-pocket maximum for Medicare beneficiaries' prescription drugs.
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R.708/S.168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e. coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individuals authorization to practice in any on e state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory may investigate and take disciplinary actions against a processional who provides services pursuant to this bill to a patient in that body's jurisdiction.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
-CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
- Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; the establishment Advanced Research Projects Agency for Health (ARPA-H); and provisions related to an out-of-pocket maximum for Medicare beneficiaries' prescription drugs.
- Telehealth Modernization Act (H.R. 1332/S. 368) -- Provisions related to the modification of requirements relating to coverage of telehealth services under Medicare bill, including certain flexibilities that were initially authorized during the public health emergency relating to COVID-19.
- HELP Copays Act (H.R.5801)-- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
- CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
-Food and Drug Amendments of 2022 (H.R. 7667) / PDUFA VII-- provisions related to accelerated approval program, clinical trial diversity, novel clinical trial design and modeling, improving accountability and transparency of the FDA.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Justice for ALS Veterans Act (H.R. 5607 / S.3483) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave.
Agencies Lobbied
U.S. Senate
Type of Issue
Family Issues/Abortion/Adoption
Lobbying Issues
Air Carrier Amendments Act HR1619/S642 -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
Lobbying Issues
- Air Carrier Amendments Act HR1619/S642 -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
- Disability Employment Incentive Act HR 3765/S630 - Provisions related to adding SSDI recipients to qualified Work Opportunity Tax Credits, doubling and extending the Work Opportunity Tax Credit, doubling the Disability Access Expenditures Tax Credit, and increasing the Architectural and Transportation Barrier Tax Credit.
Agencies Lobbied
U.S. Senate
Type of Issue
Civil Rights/Civil Liberties
1st Quarter, 2022
In Q1, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on April 20, 2022.
Original Filing: 301367665.xml
Lobbying Issues
-Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $135 million for ALS research at NIH in fiscal year 2023 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
-Requested the House and Senate Appropriations LHHS Subcommittee provide at least $75 000,000 to implement the expanded access program established by the ACT for ALS Act (P.L. 117-79).
-Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2023 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.
-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 2023 to to implement P.L. 117-79 to establish the FDA Rare Neurodegenerative Disease Grant Program which is authorized to provide grants for clinical trials for ALS and other neurodegenerative diseases.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2023 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 collect biospecimens that will lead to a better understanding of who may develop ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Telehealth Modernization Act (H.R. 1332/ S. 368) extends certain COVID telehealth flexibilities. Among other things, the bill allows (1) rural health clinics and federally qualified health centers to serve as the distant site (i.e., the location of the health care practitioner); (2) the home of a beneficiary to serve as the originating site (i.e., the location of the beneficiary) for all services (rather than for only certain services); and (3) all types of practitioners to furnish telehealth services, as determined by the Centers for Medicare & Medicaid Services.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/ S. 1512) expands coverage of telehealth services under Medicare. Among other things, the bill allows the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and allows the CMS to generally waive coverage restrictions during national emergencies. Additionally, the Medicare Payment Advisory Commission must report on information relating to the access of Medicare beneficiaries to telehealth services at home. The Center for Medicare and Medicaid Innovation may also test alternative payment models relating to expanded telehealth services.
CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; and the establishment Advanced Research Projects Agency for Health (ARPA-H).
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/ S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e., coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory body may investigate and take disciplinary actions against a professional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-The Promising Pathway Act (S. 1644) would establish a new time-limited "provisional approval" path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
-Accelerating Access to Critical Therapies (ACT) for ALS Act (H.R. 3537/ S. 1813) would create 1) a new framework for delivering experimental therapies to people with rare neurodegenerative diseases such as ALS; 2) create a new research grant program at the FDA to such diseases, and; 3) create a new Public-Private Partnership at the Department of Health and Human Services to coordinate federal efforts on developing and approving treatments for such diseases.
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
- Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; and the establishment Advanced Research Projects Agency for Health (ARPA-H).
- Telehealth Modernization Act (H.R. 1332/S. 368) -- Provisions related to the modification of requirements relating to coverage of telehealth services under Medicare bill, including certain flexibilities that were initially authorized during the public health emergency relating to COVID-19.
- ACT for ALS (P.L. 117-70) - Conversations surrounding implementation of PL 117-79, the Accessing Critical Therapies for ALS Act.
Agencies Lobbied
U.S. Senate
Lobbying Issues
- CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
- Conversations surrounding Prescription Drug User Fee Act VII (PDUFA VII) -- provisions related to modernization of regulatory evidence generation and drug development tools through novel clinical trial design and modeling, improving accountability and transparency of the FDA, enhancing staff retention and resource management.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Justice for ALS Veterans Act (H.R. 5607 / S.3483) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave.
Agencies Lobbied
U.S. Senate
Type of Issue
Family Issues/Abortion/Adoption
Lobbying Issues
Air Carrier Amendments Act HR1619/S642 -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
Agencies Lobbied
U.S. Senate
Type of Issue
Aviation/Aircraft/Airlines
Lobbying Issues
- Air Carrier Amendments Act HR1619/S642 -- provisions related to prohibiting discrimination against disabled individuals by an air carrier.
- Disability Employment Incentive Act HR 3765/S630 - Provisions related to adding SSDI recipients to qualified Work Opportunity Tax Credits, doubling and extending the Work Opportunity Tax Credit, doubling the Disability Access Expenditures Tax Credit, and increasing the Architectural and Transportation Barrier Tax Credit.
Agencies Lobbied
U.S. Senate
Type of Issue
Civil Rights/Civil Liberties
4th Quarter, 2021
In Q4, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Jan. 20, 2022.
Original Filing: 301335937.xml
Lobbying Issues
-Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
-Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2022 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.
-Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $50 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 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 collect biospecimens that will lead to a better understanding of who may develop ALS.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $1 million for a National Academies of Science, Engineering and Medicine study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Telehealth Modernization Act (H.R. 1332/ S. 368) extends certain COVID telehealth flexibilities. Among other things, the bill allows (1) rural health clinics and federally qualified health centers to serve as the distant site (i.e., the location of the health care practitioner); (2) the home of a beneficiary to serve as the originating site (i.e., the location of the beneficiary) for all services (rather than for only certain services); and (3) all types of practitioners to furnish telehealth services, as determined by the Centers for Medicare & Medicaid Services.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/ S. 1512) expands coverage of telehealth services under Medicare. Among other things, the bill allows the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and allows the CMS to generally waive coverage restrictions during national emergencies. Additionally, the Medicare Payment Advisory Commission must report on information relating to the access of Medicare beneficiaries to telehealth services at home. The Center for Medicare and Medicaid Innovation may also test alternative payment models relating to expanded telehealth services.
CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; and the establishment Advanced Research Projects Agency for Health (ARPA-H).
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/ S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e., coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory body may investigate and take disciplinary actions against a professional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-The Promising Pathway Act (S. 1644) would establish a new time-limited "provisional approval" path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
-Accelerating Access to Critical Therapies (ACT) for ALS Act (H.R. 3537/ S. 1813) would create 1) a new framework for delivering experimental therapies to people with rare neurodegenerative diseases such as ALS; 2) create a new research grant program at the FDA to such diseases, and; 3) create a new Public-Private Partnership at the Department of Health and Human Services to coordinate federal efforts on developing and approving treatments for such diseases.
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
CURES 2.0 Act (H.R. 6000) -- Provisions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave; extending Medicare telehealth flexibilities beyond the COVID-19 public health emergency; and the establishment Advanced Research Projects Agency for Health (ARPA-H).
Telehealth Modernization Act (H.R. 1332/S. 368) -- Provisions related to the modification of requirements relating to coverage of telehealth services under Medicare bill, including certain flexibilities that were initially authorized during the public health emergency relating to COVID-19.
Agencies Lobbied
U.S. Senate
Lobbying Issues
CURES 2.0 Act (H.R. 6000) -- Previsions related to drug development, research, and access to emerging therapies for Americans with ALS and other rare diseases through the creation of ARPA-H and other mechanisms.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Justice for ALS Veterans Act (H.R. 5607 / S.3483) -- 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.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Build Back Better Act (H.R. 5376) -- Provisions related to providing up to 12 weeks of paid family and medical leave.
Agencies Lobbied
U.S. Senate
Type of Issue
Family Issues/Abortion/Adoption
3rd Quarter, 2021
In Q3, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Nov. 15, 2021.
Original Filing: 301317970.xml
Lobbying Issues
-Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
-Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2022 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.
-Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $50 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 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 collect biospecimens that will lead to a better understanding of who may develop ALS.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $1 million for a National Academies of Science, Engineering and Medicine study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Telehealth Modernization Act (H.R. 1332/ S. 368) extends certain COVID telehealth flexibilities. Among other things, the bill allows (1) rural health clinics and federally qualified health centers to serve as the distant site (i.e., the location of the health care practitioner); (2) the home of a beneficiary to serve as the originating site (i.e., the location of the beneficiary) for all services (rather than for only certain services); and (3) all types of practitioners to furnish telehealth services, as determined by the Centers for Medicare & Medicaid Services.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/ S. 1512) expands coverage of telehealth services under Medicare. Among other things, the bill allows the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and allows the CMS to generally waive coverage restrictions during national emergencies. Additionally, the Medicare Payment Advisory Commission must report on information relating to the access of Medicare beneficiaries to telehealth services at home. The Center for Medicare and Medicaid Innovation may also test alternative payment models relating to expanded telehealth services.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/ S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e., coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory body may investigate and take disciplinary actions against a professional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-The Promising Pathway Act (S. 1644) would establish a new time-limited "provisional approval" path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
-Accelerating Access to Critical Therapies (ACT) for ALS Act (H.R. 3537/ S. 1813) would create 1) a new framework for delivering experimental therapies to people with rare neurodegenerative diseases such as ALS; 2) create a new research grant program at the FDA to such diseases, and; 3) create a new Public-Private Partnership at the Department of Health and Human Services to coordinate federal efforts on developing and approving treatments for such diseases.
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
Agencies Lobbied
U.S. Senate
2nd Quarter, 2021
In Q2, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Aug. 2, 2021.
Original Filing: 301293432.xml
Lobbying Issues
-Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
-Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2022 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.
-Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $50 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 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 collect biospecimens that will lead to a better understanding of who may develop ALS.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $1 million for a National Academies of Science, Engineering and Medicine study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Telehealth Modernization Act (H.R. 1332/ S. 368) extends certain COVID telehealth flexibilities. Among other things, the bill allows (1) rural health clinics and federally qualified health centers to serve as the distant site (i.e., the location of the health care practitioner); (2) the home of a beneficiary to serve as the originating site (i.e., the location of the beneficiary) for all services (rather than for only certain services); and (3) all types of practitioners to furnish telehealth services, as determined by the Centers for Medicare & Medicaid Services.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/ S. 1512) expands coverage of telehealth services under Medicare. Among other things, the bill allows the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and allows the CMS to generally waive coverage restrictions during national emergencies. Additionally, the Medicare Payment Advisory Commission must report on information relating to the access of Medicare beneficiaries to telehealth services at home. The Center for Medicare and Medicaid Innovation may also test alternative payment models relating to expanded telehealth services.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/ S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e., coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory body may investigate and take disciplinary actions against a professional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-The Promising Pathway Act (S. 1644) would establish a new time-limited "provisional approval" path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
-Accelerating Access to Critical Therapies (ACT) for ALS Act (H.R. 3537/ S. 1813) would create 1) a new framework for delivering experimental therapies to people with rare neurodegenerative diseases such as ALS; 2) create a new research grant program at the FDA to such diseases, and; 3) create a new Public-Private Partnership at the Department of Health and Human Services to coordinate federal efforts on developing and approving treatments for such diseases.
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
Agencies Lobbied
U.S. Senate
2nd Quarter, 2021
THE ALS ASSOCIATION amended a lobbying report for in-house lobbying in Q22021 on Aug. 2, 2021
Original Filing: 301293433.xml
Lobbying Issues
-Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
-Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2022 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.
-Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $50 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 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 collect biospecimens that will lead to a better understanding of who may develop ALS.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $1 million for a National Academies of Science, Engineering and Medicine study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Telehealth Modernization Act (H.R. 1332/ S. 368) extends certain COVID telehealth flexibilities. Among other things, the bill allows (1) rural health clinics and federally qualified health centers to serve as the distant site (i.e., the location of the health care practitioner); (2) the home of a beneficiary to serve as the originating site (i.e., the location of the beneficiary) for all services (rather than for only certain services); and (3) all types of practitioners to furnish telehealth services, as determined by the Centers for Medicare & Medicaid Services.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/ S. 1512) expands coverage of telehealth services under Medicare. Among other things, the bill allows the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and allows the CMS to generally waive coverage restrictions during national emergencies. Additionally, the Medicare Payment Advisory Commission must report on information relating to the access of Medicare beneficiaries to telehealth services at home. The Center for Medicare and Medicaid Innovation may also test alternative payment models relating to expanded telehealth services.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/ S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e., coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory body may investigate and take disciplinary actions against a professional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-The Promising Pathway Act (S. 1644) would establish a new time-limited "provisional approval" path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
-Accelerating Access to Critical Therapies (ACT) for ALS Act (H.R. 3537/ S. 1813) would create 1) a new framework for delivering experimental therapies to people with rare neurodegenerative diseases such as ALS; 2) create a new research grant program at the FDA to such diseases, and; 3) create a new Public-Private Partnership at the Department of Health and Human Services to coordinate federal efforts on developing and approving treatments for such diseases.
-Promising Pathway Act (H.R. 3761/S. 1644) would create a provisional approval path for drugs and biological interventions that meet unmet needs of rare diseases like ALS.
Agencies Lobbied
U.S. Senate
1st Quarter, 2021
In Q1, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on June 1, 2021.
Original Filing: 301271900.xml
Lobbying Issues
-Requested that the House and Senate Appropriations LHHS Subcommittee provide at least $130 million for ALS research at NIH in fiscal year 2022 to attract the next generation of scientists, accelerate the discovery and development of new treatments and increase the number of ALS clinical trials.
-Requested the House and Senate Appropriations Defense Subcommittee provide at least $60 million for the ALS Research Program in fiscal year 2022 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.
-Requested the House and Senate Appropriations Agriculture Subcommittee provide at least $50 million specifically for ALS research to the FDA Orphan Products Grants Program in fiscal year 2022 to increase the number of ALS clinical trials and allow FDA to apply their own unique regulatory expertise in those trials to expedite treatment development, foster innovative trial designs that complement and speed regulatory processes, and enable natural history studies to more quickly understand ALS progression and pathology.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $10 million to continue the National ALS Registry and Biorepository in fiscal year 2022 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 collect biospecimens that will lead to a better understanding of who may develop ALS.
-Requested House and Senate Appropriations LHHS Subcommittee provide at least $1 million for a National Academies of Science, Engineering and Medicine study to develop a plan and policy recommendations for what can be done by the government and all stakeholders to end ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Telehealth Modernization Act (H.R. 1332/ S. 368) extends certain COVID telehealth flexibilities. Among other things, the bill allows (1) rural health clinics and federally qualified health centers to serve as the distant site (i.e., the location of the health care practitioner); (2) the home of a beneficiary to serve as the originating site (i.e., the location of the beneficiary) for all services (rather than for only certain services); and (3) all types of practitioners to furnish telehealth services, as determined by the Centers for Medicare & Medicaid Services.
-The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (H.R. 2903/ S. 1512) expands coverage of telehealth services under Medicare. Among other things, the bill allows the Centers for Medicare & Medicaid Services (CMS) to waive certain restrictions, such as geographic restrictions, for services provided in high-need health professional shortage areas; excludes mental health and emergency medical services, as well as services provided at rural health clinics, federally qualified health centers, and Indian Health Service facilities, from such geographic restrictions; and allows the CMS to generally waive coverage restrictions during national emergencies. Additionally, the Medicare Payment Advisory Commission must report on information relating to the access of Medicare beneficiaries to telehealth services at home. The Center for Medicare and Medicaid Innovation may also test alternative payment models relating to expanded telehealth services.
Agencies Lobbied
U.S. Senate
Lobbying Issues
-The Temporary Reciprocity to Ensure Access to Treatment (TREAT) Act (H.R. 708/ S. 168) temporarily authorizes the interstate provision of in-person and telehealth services. This authorization applies during, and for at least 180 days after, the COVID-19 (i.e., coronavirus disease 2019) emergency. Specifically, subject to scope of practice and other requirements, a health care professional may provide health services in any U.S. jurisdiction based on that individual's authorization to practice in any one state or territory. The bill also provides certain related powers to health care professional regulatory bodies, such as medical boards. Specifically, a regulatory body may investigate and take disciplinary actions against a professional who provides services pursuant to this bill to a patient in that body's jurisdiction.
-The Promising Pathway Act (S. 1644) would establish a new time-limited "provisional approval" path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
-The Accelerating Access to Critical Therapies (ACT) for ALS Act (H.R. 3537/ S. 1813) would create 1) a new framework for delivering experimental therapies to people with rare neurodegenerative diseases such as ALS; 2) create a new research grant program at the FDA to such diseases, and; 3) create a new Public-Private Partnership at the Department of Health and Human Services to coordinate federal efforts on developing and approving treatments for such diseases.
Agencies Lobbied
U.S. Senate
4th Quarter, 2020
In Q4, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Feb. 16, 2021.
Original Filing: 301248430.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (S. 2741/ H.R. 4932) would expand access to telemedicine and telehealth for people with ALS through a legal and regulatory environment where providers are permitted to deliver safe, high quality care using telehealth and telemedicine regardless of care delivery location or technological method. Additionally, all changes made to expand access to telehealth during the COVID-19 public health emergency should be permanently extended.
Promising Pathway Act (H.R. 7269/ S. 3872) to establish a new time-limited provisional approval path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
Accelerating Critical Therapies for ALS Act (H.R. 7071) reintroduced as H.R. 8662/ S. 4867 to create 1) a new framework for delivering experimental therapies to people with ALS; 2) a new research grant program at the FDA for rare neurodegenerative diseases, and; 3) a new Collaborative for Rare Neurodegenerative Diseases at the Department of Health and Human Services (HHS) to coordinate federal efforts on developing and approving effective treatments and cures.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $40 million for the ALS Research Program at the Department of Defense, a $20 million increase over the ALSRP's funding in FY2020. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $44.7 billion for the NIH, a $3 billion increase over NIHs program level funding in FY 2020. This funding level would allow for meaningful growth above inflation in the base budget and would expand NIHs capacity to support promising science in all disciplines across the agency. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested Congress fix the law to allow Medicare beneficiaries with ALS to receive home infusion of IV medications. As the disease progresses, people with ALS face increased mobility challenges, eventually becoming homebound and requiring care at home. Under current law, there is no Medicare coverage of home infusion for ALS drugs. Medicare Part B beneficiaries must leave the home to receive infusions at a hospital, doctors office or infusion center; Medicare Part D only covers the IV medication, leaving beneficiaries to pay out-of-pocket for home infusion pharmacy and nursing services. Private insurance fully covers home infusion. The ALS Association is advocating to expand Medicare coverage of home infusion that is equivalent to private coverage.
Agencies Lobbied
U.S. Senate
Lobbying Issues
The Justice for ALS Veterans Act (S. 3091/H.R. 4748) would increase dependency and indemnity compensation (DIC) paid to surviving spouses of veterans who die from ALS regardless of how long the veteran had ALS prior to death. Because ALS is a service-connected disease, families of deceased veterans receive a DIC. However, they are denied a supplemental DIC increase available only to families of veterans who live at least eight years with a service-connected disability. Families of veterans who died from ALS deserve the same compensation as other military families.
Agencies Lobbied
U.S. Senate
3rd Quarter, 2020
In Q3, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Nov. 16, 2020.
Original Filing: 301226588.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (S. 2741/ H.R. 4932) would expand access to telemedicine and telehealth for people with ALS through a legal and regulatory environment where providers are permitted to deliver safe, high quality care using telehealth and telemedicine regardless of care delivery location or technological method. Additionally, all changes made to expand access to telehealth during the COVID-19 public health emergency should be permanently extended.
Promising Pathway Act (H.R. 7269/ S. 3872) to establish a new time-limited provisional approval path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
Accelerating Critical Therapies for ALS Act (H.R. 7071) reintroduced as H.R. 8662/ S. 4867 to create 1) a new framework for delivering experimental therapies to people with ALS; 2) a new research grant program at the FDA for rare neurodegenerative diseases, and; 3) a new Collaborative for Rare Neurodegenerative Diseases at the Department of Health and Human Services (HHS) to coordinate federal efforts on developing and approving effective treatments and cures.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $40 million for the ALS Research Program at the Department of Defense, a $20 million increase over the ALSRP's funding in FY2020. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $44.7 billion for the NIH, a $3 billion increase over NIHs program level funding in FY 2020. This funding level would allow for meaningful growth above inflation in the base budget and would expand NIHs capacity to support promising science in all disciplines across the agency. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested Congress fix the law to allow Medicare beneficiaries with ALS to receive home infusion of IV medications. As the disease progresses, people with ALS face increased mobility challenges, eventually becoming homebound and requiring care at home. Under current law, there is no Medicare coverage of home infusion for ALS drugs. Medicare Part B beneficiaries must leave the home to receive infusions at a hospital, doctors office or infusion center; Medicare Part D only covers the IV medication, leaving beneficiaries to pay out-of-pocket for home infusion pharmacy and nursing services. Private insurance fully covers home infusion. The ALS Association is advocating to expand Medicare coverage of home infusion that is equivalent to private coverage.
Agencies Lobbied
U.S. Senate
Lobbying Issues
The Justice for ALS Veterans Act (S. 3091/H.R. 4748) would increase dependency and indemnity compensation (DIC) paid to surviving spouses of veterans who die from ALS regardless of how long the veteran had ALS prior to death. Because ALS is a service-connected disease, families of deceased veterans receive a DIC. However, they are denied a supplemental DIC increase available only to families of veterans who live at least eight years with a service-connected disability. Families of veterans who died from ALS deserve the same compensation as other military families.
Agencies Lobbied
U.S. Senate
2nd Quarter, 2020
In Q2, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Aug. 17, 2020.
Original Filing: 301205305.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
The Creating Opportunities Now for Necessary and Effective Care Technologies (CONNECT) for Health Act (S. 2741/ H.R. 4932) would expand access to telemedicine and telehealth for people with ALS through a legal and regulatory environment where providers are permitted to deliver safe, high quality care using telehealth and telemedicine regardless of care delivery location or technological method. Additionally, all changes made to expand access to telehealth during the COVID-19 public health emergency should be permanently extended.
Promising Pathway Act (H.R. 7269/ S. 3872) to establish a new time-limited provisional approval path at the FDA for drug sponsors to market drugs that show promise while additional testing takes place and before full FDA approval is achieved.
Accelerating Critical Therapies for ALS Act (H.R. 7071) to establish agrant program to provide access to experimental drugs to people with ALS and other rapidly progressing neurological diseases for which effective therapies do not currently exist and create a Center of Excellence for Neurodegenerative Diseases at the FDA to speed the development and approval of therapies for neurodegenerative diseases.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $40 million for the ALS Research Program at the Department of Defense, a $20 million increase over the ALSRP's funding in FY2020. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $44.7 billion for the NIH, a $3 billion increase over NIHs program level funding in FY 2020. This funding level would allow for meaningful growth above inflation in the base budget and would expand NIHs capacity to support promising science in all disciplines across the agency. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
The Safeguarding Medicare Access to Respiratory Therapy Act (H.R.4945) would remove noninvasive ventilators (NIV) from the Centers for Medicare and Medicaid Services (CMS) Competitive Bidding Program (CBP) by cosponsoring the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R.4945).
Requested that CMS remove NIV from CBP and work with clinicians and patient groups to update outdated coverage policies.
Requested Congress fix the law to allow Medicare beneficiaries with ALS to receive home infusion of IV medications. As the disease progresses, people with ALS face increased mobility challenges, eventually becoming homebound and requiring care at home. Under current law, there is no Medicare coverage of home infusion for ALS drugs. Medicare Part B beneficiaries must leave the home to receive infusions at a hospital, doctors office or infusion center; Medicare Part D only covers the IV medication, leaving beneficiaries to pay out-of-pocket for home infusion pharmacy and nursing services. Private insurance fully covers home infusion. The ALS Association is advocating to expand Medicare coverage of home infusion that is equivalent to private coverage.
Agencies Lobbied
U.S. Senate
Lobbying Issues
The Justice for ALS Veterans Act (S. 3091/H.R. 4748) would increase dependency and indemnity compensation (DIC) paid to surviving spouses of veterans who die from ALS regardless of how long the veteran had ALS prior to death. Because ALS is a service-connected disease, families of deceased veterans receive a DIC. However, they are denied a supplemental DIC increase available only to families of veterans who live at least eight years with a service-connected disability. Families of veterans who died from ALS deserve the same compensation as other military families.
Agencies Lobbied
U.S. Senate
1st Quarter, 2020
In Q1, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on April 21, 2020.
Original Filing: 301180360.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $40 million for the ALS Research Program at the Department of Defense, a $20 million increase over the ALSRP's funding in FY2020. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $44.7 billion for the NIH, a $3 billion increase over NIHs program level funding in FY 2020. This funding level would allow for meaningful growth above inflation in the base budget and would expand NIHs capacity to support promising science in all disciplines across the agency. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Advocated for passage of the Safeguarding Medicare Access to Respiratory Therapy Act (H.R.4945) to remove noninvasive ventilators (NIV) from the Centers for Medicare and Medicaid Services (CMS) Competitive Bidding Program (CBP) by cosponsoring the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R.4945).
Requested that CMS remove NIV from CBP and work with clinicians and patient groups to update outdated coverage policies.
Agencies Lobbied
U.S. Senate
4th Quarter, 2019
In Q4, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Feb. 26, 2020.
Original Filing: 301142489.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $20 million for the ALS Research Program at the Department of Defense, a $10 million increase over the ALSRP's funding in FY2019. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $41.6 billion in FY2020 for the National Institutes of Health (NIH), a $2.5 billion increase over the NIHs program level funding in FY 2019. This funding level would allow for meaningful growth above inflation in the base budget that would expand NIHs capacity to support promising science in all disciplines. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Introduced the Safeguarding Medicare Access to Respiratory Therapy Act (H.R.4945) to remove noninvasive ventilators (NIV) from the Centers for Medicare and Medicaid Services (CMS) Competitive Bidding Program (CBP) by cosponsoring the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R.4945).
Requested that CMS remove NIV from CBP and work with clinicians and patient groups to update outdated coverage policies.
Agencies Lobbied
U.S. Senate
3rd Quarter, 2019
In Q3, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Nov. 14, 2019.
Original Filing: 301081244.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $20 million for the ALS Research Program at the Department of Defense, a $10 million increase over the ALSRP's funding in FY2019. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $41.6 billion in FY2020 for the National Institutes of Health (NIH), a $2.5 billion increase over the NIHs program level funding in FY 2019. This funding level would allow for meaningful growth above inflation in the base budget that would expand NIHs capacity to support promising science in all disciplines. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that the House and Senate oppose the Centers for Medicare and Medicaid Services (CMS) decision to include noninvasive Ventilators (NIV) in the Competitive Bidding Program (CBP) by cosponsoring the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R.4945).
Requested that CMS remove NIV from CBP and work with clinicians and patient groups to update outdated coverage policies.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Endorsed the Paid Family Leave Pilot Extension Act (S.1628) to extend the Paid Family Leave
Tax Credit through 2022 for the paid family and medical leave pilot program,
which is set to expire on December 31, 2019.
Type of Issue
Taxation/Internal Revenue Code
2nd Quarter, 2019
In Q2, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Sept. 4, 2019.
Original Filing: 301061853.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.578/H.R.1407) to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $20 million for the ALS Research Program at the Department of Defense, a $10 million increase over the ALSRP's funding in FY2019. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $41.6 billion in FY2020 for the National Institutes of Health (NIH), a $2.5 billion increase over the NIHs program level funding in FY 2019. This funding level would allow for meaningful growth above inflation in the base budget that would expand NIHs capacity to support promising science in all disciplines. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that the House and Senate oppose the Centers for Medicare and Medicaid Services (CMS) decision to include noninvasive Ventilators (NIV) in the Competitive Bidding Program (CBP). Identified Representative and Senators to introduce legislation to remove NIV from CBP and require CMS to update its outdated coverage policies.
Requested that CMS remove NIV from CBP and work with clinicians and patient groups to update outdated coverage policies.
Agencies Lobbied
U.S. Senate
1st Quarter, 2019
In Q1, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on April 23, 2019.
Original Filing: 301038965.xml
Lobbying Issues
Reintroduced ALS Disability Insurance Access Act (S.578/H.R.1407) for the 116th Congress to waive the five-month waiting period before people with ALS receive benefits under Social Security Disability Insurance.
Supported legislation (H.R.1010) to provide that the rule entitled "Short Term, Limited Duration Insurance" shall have no force or effect. Originally intended as temporary bridge or gap plans, short-term limited-duration health insurance policies have lower premiums than other plans on the market because they are exempt from many of the key requirements (including protections for pre-existing conditions and do not have to provide ACA-compliant Essential Health Benefits) that provide comprehensive coverage and protect consumers from high out-of-pocket costs.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Requested that House and Senate Defense Appropriations Subcommittee provide $20 million for the ALS Research Program at the Department of Defense, a $10 million increase over the ALSRP's funding in FY2019. This funding level would enable the ALSRP to refocus efforts on making investments in early phase clinical trials (Phase 1-2) to de-risk early phase trials for ALS, bridging the valley of death to make private investment into ALS more possible. With a number of promising ALSRP-funded preclinical projects with the potential to enter early phase trials, now is the time to increase investment in this critical gap in the ALS research continuum.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $10 million in FY2020, level funding over the programs FY2019 funding, for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Requested that House and Senate Labor-Health-Human Services (LHHS) Appropriations Subcommittee provide $41.6 billion in FY2020 for the National Institutes of Health (NIH), a $2.5 billion increase over the NIHs program level funding in FY 2019. This funding level would allow for meaningful growth above inflation in the base budget that would expand NIHs capacity to support promising science in all disciplines. It also would ensure that funding from the Innovation Account established in the 21st Century Cures Act would supplement the agencys base budget, as intended, through dedicated funding for specific programs.
Agencies Lobbied
U.S. Senate
4th Quarter, 2018
In Q4, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Jan. 31, 2019.
Original Filing: 301019396.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
Ensuring Coverage for Patients with Pre-Existing Conditions Act (S.3388) to oppose the legislation and go further in supporting protections for insurance coverage for people with pre-existing conditions.
Agencies Lobbied
U.S. Senate
Lobbying Issues
ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Defense Appropriations for FY2019 to provide $20 million for the ALS Research Program at the Department of Defense.
Agencies Lobbied
U.S. Senate
3rd Quarter, 2018
In Q3, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Oct. 11, 2018.
Original Filing: 300984372.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
Ensuring Coverage for Patients with Pre-Existing Conditions Act (S.3388) to oppose the legislation and go further in supporting protections for insurance coverage for people with pre-existing conditions.
Agencies Lobbied
U.S. Senate
Lobbying Issues
ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Labor-Health-Human Services (LHHS) Appropriations for FY2019 to provide $10 million for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Labor-Health-Human Services (LHHS)Appropriations for FY2019 to provide $39.3 billion for the National Institutes of Health.
Defense Appropriations for FY2019 to provide $10 million for the ALS Research Program at the Department of Defense.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Tax 2.0 (a series of bills including H.R.6756, H.R.6757, and H.R.6760) to make permanent the Medical Expense Tax Deduction and allow a deduction with an income threshold for qualifying expenses at 7.5 percent.
Agencies Lobbied
U.S. House of Representatives
Type of Issue
Taxation/Internal Revenue Code
2nd Quarter, 2018
In Q2, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Oct. 11, 2018.
Original Filing: 300984366.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Type of Issue
Health Issues/Medicaid
Lobbying Issues
Labor-Health-Human Services (LHHS) Appropriations for FY2019 to provide $10 million for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Labor-Health-Human Services (LHHS)Appropriations for FY2019 to provide $39.3 billion for the National Institutes of Health.
Defense Appropriations for FY2019 to provide $10 million for the ALS Research Program at the Department of Defense.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Submitted comments to FDA regarding Amyotrophic Lateral Sclerosis: Developing Drugs for Treatment; Draft Guidance for Industry (Docket No. FDA-2013-N-0035) and hosted a public forum that provided the FDA with targeted feedback and information from people with ALS, caregivers, and stakeholders to ensure the patient voice in the FDAs Draft Guidance on ALS Drug Development.
Agencies Lobbied
Food & Drug Administration (FDA)
Type of Issue
Medical/Disease Research/Clinical Labs
1st Quarter, 2018
In Q1, THE ALS ASSOCIATION had in-house lobbyists. The report was filed on Oct. 11, 2018.
Original Filing: 300984359.xml
Lobbying Issues
ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
Steve Gleason Enduring Voices Act (S.1132 and H.R.2465) to permanently fix the current Centers for Medicare and Medicaid Services (CMS) policy limiting access to Speech Generating Devices (SGD) for people with degenerative diseases like ALS.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Tax Cuts and Jobs Act (H.R.1) to maintain the Medical Expense Tax Deduction and allow a deduction with an income threshold for qualifying expenses at 7.5 percent.
Tax Cuts and Jobs Act (H.R.1) to maintain the Orphan Drug Tax Credit (ODTC) to lower the cost of developing and testing orphan therapies for biopharmaceutical companies who develop drugs for diseases like ALS that affect fewer than 200,00 people at one time.
Agencies Lobbied
U.S. Senate
Type of Issue
Taxation/Internal Revenue Code
Lobbying Issues
ALS Disability Insurance Access Act (S.379/H.R.1171) to waive the five-month waiting period for patients with ALS before receiving benefits under Social Security Disability Insurance.
Agencies Lobbied
U.S. Senate
Lobbying Issues
Labor-Health-Human Services (LHHS) Appropriations for FY2018 and FY2019 to provide $10 million for the National ALS Registry and Biorepository at the Centers for Disease Control and Prevention.
Labor-Health-Human Services (LHHS)Appropriations for FY2018 and FY2019 to provide $39.3 billion for the National Institutes of Health.
Defense Appropriations for FY2018 and FY2019 to provide $10 million for the ALS Research Program at the Department of Defense.
Agencies Lobbied
U.S. Senate
Source: Clerk of the U.S. House of Representatives and Secretary of the Senate
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