EPILEPSY FOUNDATION for EPILEPSY FOUNDATION
What was lobbied
3 issue areas, each in the filer's own words, with who lobbied on it and where.
Budget/Appropriations BUD
-Labor, Health and Human Services, Education and Related Agencies Appropriations Act, 2025, support funding for epilepsy programs and research including $12.5 million for the CDCs Epilepsy program, $164 million for the Safe Motherhood and Infant Health program, $51.3 billion for the NIH, $15 million to start considering an epilepsy-related research and clinical consortium at the NIH, $10 million for the National Neurological Conditions Surveillance System and increased funding for the Social Security Administration. -Military Construction, Veterans Affairs, and Related Agencies Appropriations Act, 2025, support at least $26.8 million for the VA Epilepsy Centers of Excellence. -Agriculture, Rural Development, Food and Drug Administration and Related Agencies Appropriations Act, 2025, support robust funding for the Food & Drug Administrations BA. -Defense Appropriations Act, 2025, within the Congressionally Directed Medical Research Programs, support $12 million for the Epilepsy Program, $10 million for the Tuberous Sclerosis Complex program and $175 million for the TBI and Psychological Health Program.
| Lobbyist | Covered position, as disclosed |
|---|---|
| TYLER BECK | — |
| LAURA WEIDNER | — |
| ROXANNE YAGHOUBI | — |
Health Issues HCR
-S. 652/H.R. 2630, Safe Step Act, support passage. -S. 1375/H.R. 830, HELP Copays Act, support passage. -S. 1339, PBM Reform Act, support patient-centric reforms including addition of the Safe Step Act and HELP Copays Act. -H.R. 2880, Protecting Patients Against PBM Abuses Act -Support preservation of Medicare Part Ds Six Protected Classes policy. -Support patient-centric implementation of Medicare Part D out-of-pocket cap and smoothing. -Educate about Medicaid and CHIP unwinding to try and reduce coverage losses. -2025 Notice of Benefit and Payment Parameters rule, comments supporting the proposals -Urge rescission of the 2018 Definition of Employer-Association Health Plans final rule (the 2018 AHP Rule). -Urge finalization of regulations important to patients and consumers with acute and chronic health conditions including the 504 rule, short-term limited duration rule and the 1557 rule. -ERISA RFI, comments to help ensure that people with serious acute and chronic health care conditions who are covered by employer-sponsored plans are protected and have coverage that meets their health care needs -S.2140, The Patent Eligibility Restoration Act, oppose -H.R. 485, Protecting Health Care for All Patients Act, support a ban on the use of quality-adjusted life years -Ensure any regulation of CBD protects safe and legal access. -Ensure continued access to needed healthcare via telehealth including prescribing of epilepsy medications that are controlled substances -Requests to join the Congressional Epilepsy Caucus. -H.R. 824, the Telehealth Benefit Expansion for Workers Act, oppose passage. -Support the parity of coverage of mental health treatments -Support legislation and regulations that incentivize the development of orphan drugs -Support legislation and regulations that help to advance health equity for people with epilepsy -Provide technical assistance on draft bill that would establish a federal grant and subgrant program to better support students with epilepsy in schools
| Lobbyist | Covered position, as disclosed |
|---|---|
| TYLER BECK | — |
| LAURA WEIDNER | — |
| ROXANNE YAGHOUBI | — |
Civil Rights/Civil Liberties CIV
-Include provisions in FAA reauthorization to make air travel more accessible for passengers with disabilities and to update which medications are part of airplane medical emergency kits -S. 545/H.R. 1267, Air Carrier Access Amendments Act, support passage. -Response to DOT RFI on accessibility of transportation facilities -H.R. 6551, Heroes Earned Affordable Lifts (HEAL) Act, support passage
| Lobbyist | Covered position, as disclosed |
|---|---|
| TYLER BECK | — |
| ROXANNE YAGHOUBI | — |
Shown as published by the Senate Office of Public Records and the House Clerk under the Lobbying Disclosure Act. The official filing is the record; open it for the full form.