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Episode 2 - How Advocacy and Policy Intertwine
In the past and, perhaps to some extent, today, the specialized care and medications required for the appropriate management of patients with rare diseases, such as hemophilia and SLE, was neither readily accessible nor affordable. A collaborative effort for advocacy by patients and physicians has gradually pushed the evolution of legislation and regulations to improve access to optimal management. Two such legislation are the Orphan Drug Act of 1983 and the Rare Diseases Act of 2002, which provided the incentives and means necessary to drive the pharmaceutical research and development to grow a flourishing drug market and pipeline for rare diseases. As a result, managed care policies continue to evolve in many ways, implementing mechanisms and policies to balance treatment access and costs with appropriate medication use and patient outcomes. Patient and physician advocacy for rare diseases prompted a wave of change, but the momentum will need to be maintained.
Laundromats as a New Frontier in Community Health, Medicaid Outreach
May 29th 2025Lindsey Leininger, PhD, and Allister Chang, MPA, highlight the potential of laundromats as accessible, community-based settings to support Medicaid outreach, foster trust, and connect families with essential health and social services.
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At EHA 2025, Hematology Discussions Will Stretch Across Lifespans and Locations
June 5th 2025The 2025 European Hematology Association (EHA) Congress, convening virtually and in Milan, Italy, from June 12 to June 15, 2025, will feature a revamped program structure for the meeting’s 30th anniversary while maintaining ample opportunities to network, debate, and absorb practice-changing findings in hematology and oncology.
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