• Reimbursement for hemophilia services and treatments in Medicare Reimbursement for hemophilia services and treatments in Medicaid Implementation of the Hemophilia SNF Access Act Coverage for Telehealth Services Closing the Medicaid coverage gap Issues related to 1115 Waivers in Medicaid Medicaid unwinding, the process for redetermination of Medicaid eligibility Preserving and expanding access to Medicaid Sickle Cell Disease Comprehensive Care Act (H.R. 1672/S.996) PROTECT Rare Act (H.R. 6094) MVP Act (H.R. 2666) Comments Re: Medicaid; CMS Enforcement of State Compliance with Reporting and Federal Medicaid Renewal Requirements Under Section 1902(t) of the Social Security Act (CMS-2447-IFC) Comments RE: Notice of Benefit and Payment Parameters for 2025 Proposed Rule (CMS-9895-P). Comments Re: Proposed Rescission of Association Health Plan Final Rule (RIN 1210-AC16)
• Implementation of the No Surprises Act Blood and plasma safety and awareness Bleeding disorders awareness Issues related to plasma donation in border states Issues related to access to residential substance use disorder and mental health facilities for individuals with bleeding disorders Sickle Cell Care Expansion Act (H.R. 3100/S.1423) Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act of 2023 (H.R. 3884/S. 1852) Menstrual Equity for All Act (H.R. 3646)
• Implementation of the Affordable Care Act The HELP Copays Act (HR 830) Policies related to insurance coverage and COVID-19 Coverage of hemophilia treatments and services in private insurance plans, including the alternative funding model Safe Step Act (HR 2630 / S 652) Implementation of the No Surprises Act Policies related to short-term, limited duration insurance Comments related to the Mental Health Parity and Addiction Equity Act Policies related to copay accumulator adjustor programs Letter to the Committee on Education and the Workforce Request for Information on Employer-Sponsored Insurance and Employee Retirement Income Security Act (ERISA)
• FY24 House and Senate Labor-HHS Appropriations bills FY25 House and Senate Labor-HHS Appropriations bills
• Issues related to hemophilia treatments, specialty pharmacies and the 340B drug purchasing program
• Hemophilia research, prevention, surveillance and service programs and issues H.R. 3503/S. 1701 - NIH Clinical Trial Diversity Act

Duration: April 1, 2020 to present

General Issues: Medicare/Medicaid, Health Issues, Insurance, Budget/Appropriations, Pharmacy, Medical/Disease Research/Clinical Labs

Spending: about $810,000 (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 2020: House of Representatives, U.S. Senate, Centers For Medicare and Medicaid Services (CMS), White House Office, Health & Human Services - Dept of (HHS), Homeland Security - Dept of (DHS), Food & Drug Administration (FDA), Internal Revenue Service (IRS), Centers For Disease Control & Prevention (CDC), Health Resources & Services Administration (HRSA), Natl Institutes of Health (NIH), Substance Abuse & Mental Health Services Administration (SAMHSA), Consumer Financial Protection Bureau (CFPB)