Patients with rare diseases still struggle to access the medicine they need, despite growing disease awareness and passage of the Affordable Care Act. Panelists at Wednesday’s Rare Disease Congressional Caucus briefing, “Access to Care and Therapies in the New Healthcare System: A Rare Disease Perspective” described patients’ unique challenges – and new legislation aimed to improve access. Panelists depicted a health care environment complicated by specialty tiers and other utilization management techniques that can keep life-saving medication out of reach for patients with rare diseases.
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