Nathan Schaefer
Senior Vice President, Public Policy & Access @National Bleeding Disorders Foundation
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WORK HISTORY
Senior Vice President, Public Policy & Access @National Bleeding Disorders Foundation
New York, NY, US
Executive leader overseeing the federal/state government affairs, public policy, payer relations, and national patient access strategy during a pivotal period for rare disease & gene therapy. Rebranded from National Hemophilia Foundation (2023).• Federal & State Government Affairs- Lead federal lobbying, Congressional engagement, and regulatory strategy shaping legislation for rare disease, gene therapy, diagnostics, & reimbursement- Oversee state policy across Medicaid, commercial insurance, step therapy, prior authorization, & access protections; align strategy across 52 chapters.• Public Policy, Access & Payer Strategy- Lead 2 national departments with $4M+ budgets; senior advisor on legislative, regulatory, & payer issues- Direct payer relations with Medicaid, Medicare, and commercial insurers to resolve coverage, reimbursement, and utilization management barriers- Develop payer education, value frameworks, and policy solutions supporting equitable access to high‑cost & emerging therapies.• Gene Therapy & High‑Cost Treatment Access- National leader on commercialization, payer readiness, actuarial modeling, & long‑term reimbursement frameworks for ultra‑high‑cost therapies- Coordinate multi‑stakeholder alignment to address affordability & coverage challenges.Advocacy & Coalition Leadership- Lead Washington Days (450+ advocates; 300+ Congressional meetings annually) and launched Women & Girls Advocacy Day- Chair, American Plasma Users Coalition (APLUS); member, WFH global access committee; frequent national/international speaker- Appointed to Illinois Governor’s Advisory Council on financing & access for high‑cost therapies.• Organizational Leadership & External Affairs- Founded NBDF’s Leadership Development Committee and national mentorship program; created “How to Work the Room” workshop- Represent NBDF in national partnerships (HIV/AIDS, hemophilia, LGBTQ, & rare disease communities); create policy statements & strategic communications.
EDUCATION
Miami University
Bachelor's degree, Psychology, Interpersonal Communications, Anthropology
Case Western Reserve University
Master of Social Administration (Equivalent to MSW), Concentration in Management
ABOUT NATHAN SCHAEFER
Senior Public Policy, Government Affairs, & Patient Access Executive with 17+ years of national leadership advancing health policy, rare disease advocacy, and high‑stakes legislative strategy across federal, state, & global arenas. Expertise in government relations, payer strategy, coalition leadership, and public affairs. Experienced in guiding the bleeding disorders community through the emergence of gene therapy and other ultra‑high‑cost treatments, shaping policy, influencing regulatory frameworks, and aligning patients, payers, clinicians, & industry around complex access and reimbursement challenges.Skilled in building high‑performing teams, leading multimillion‑dollar departments, and driving organizational strategy for mission‑driven nonprofits and national health organizations. Trusted public speaker and seasoned advocate with experience briefing Members of Congress, testifying before federal advisory bodies, and representing U.S. patient communities on international stages. Demonstrated success in strengthening grassroots engagement, forging strategic partnerships, and elevating patient voices in policy development.Leadership Highlights:• Public Policy & Government Affairs: 17 years directing federal & state policy strategy; 13 years in SVP/VP/Director roles and 4 years as Executive Director.• Legislative & Regulatory Impact: Advanced LGBTQ nondiscrimination protections, HIV testing reform, antibullying legislation, and modernization of national blood donation policies.• Team & Budget Leadership: Led teams of up to 15 across policy, access, & payer relations; managed and expanded budgets from $2.5M to $4M+.• Payer & Access Strategy: Oversaw payer relations, reimbursement strategy, and patient access programs for rare disease & gene therapy communities.• Coalition Leadership: Chair of the American Plasma Users Coalition (APLUS), representing 14 organizations and U.S. plasma patients; member of the World Federation of Hemophilia’s global access and safety committee.• National Advocacy: Directed 11 years of Washington Days, coordinating 450+ advocates from 47 states and 300+ Congressional meetings; launched the first national advocacy day for women and girls with bleeding disorders.• External Affairs & Communications: National speaker with media, conference, and Congressional briefing experience; keynote presenter on health equity, political determinants of health, and global rare disease policy.• Academic Experience: Former Adjunct Professor at Columbia University, teaching graduate courses in advocacy & public policy.
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