Lucy Culp | Vice President, State Government Affairs
The Leukemia & Lymphoma Society (LLS)
Lucy Culp is Vice President, State Government Affairs at The Leukemia & Lymphoma Society (LLS). Lucy leads a team of government affairs staff who advocate for state-level policy change to ensure blood cancer patients have access to affordable, meaningful healthcare. Prior to joining LLS, Lucy spent nearly 15 years at the American Heart Association, working extensively on state implementation of the Affordable Care Act and a wide range of other healthcare and public health policies. Lucy also serves as a Consumer Representative to the National Association of Insurance Commissioners. She holds a bachelor’s degree from the University of Washington and lives in Washington, DC.
Appearances:
Day 1- World Orphan Drug Congress USA 2025 @ 15:50
Panel: Access to rare disease therapies in Medicaid - Barriers and policy solutions
Medicaid covers nearly 80 million Americans, making it the largest health care program in the United States. It is therefore a critical source of coverage and access to transformational therapies for people with rare diseases. Unfortunately, people living with rare disease in Medicaid often confront significant barriers to treatment. To develop a deeper understanding of these challenges, the Manatt Cell & Gene Therapy Research Collaborative analyzed 50-state data on issues including:
· Access to testing and specialists
· Restrictive coverage policies
· Delays in care
· Support for long-distance travel
In addition to discussing key findings from the research, Manatt and the Leukemia & Lymphoma Society (LLS) will discuss potential policy solutions and implications for advocacy to reduce these obstacles to patient access.
Sponsored by Johnson & Johnson.
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