Experts at Asembia’s AXS25 Summit discussed the economics of specialty pharmacy for rare diseases, addressing high treatment costs and strategies for balancing innovation.
Specialty pharmacies serving rare disease patients are struggling to maintain financial viability while providing critical high-touch clinical services that go far beyond the traditional pharmacy model, but solutions are possible, according to an expert panel discussion held during a business session titled “The Economics of Specialty Pharmacy for Rare Diseases: Challenges & Opportunities” at Asembia’s AXS25 Summit, which takes place April 27 through May 1 in Las Vegas, Nevada.
John Daly, head of North American patient support services at Sanofi, highlighted the importance of ensuring that the complex services provided for rare diseases are truly meeting patient needs. The panel included experts from various sectors of pharmaceutical and specialty pharmacy economics, such as Richard Faris from PANTHERx Rare Pharmacy, Michael T. Einodshofer of Merx Consulting, and Arpan Patel from Novartis.
The discussion focused on the rising costs of orphan and rare drugs, with median costs in the US reaching over $218,000, far exceeding non-orphan drugs. Panelists underscored the urgent need for evidence-based strategies to sustain innovation while keeping treatments affordable.
Faris emphasized that patients with rare diseases often face misdiagnoses and limited treatment access for years, necessitating highly trained pharmacists and real-time data sharing to improve outcomes. The backgrounds of the panelists revealed multifaceted challenges, including issues with third-party reimbursements, which can threaten the financial sustainability of these specialized services.
Potential solutions discussed included creative contracts between pharmacies and payers, better alignment on performance metrics, and differentiated reimbursement models tailored specifically for rare disease treatments. Despite these challenges, the panelists noted that innovation in specialty pharmacy continues at a rapid pace, with many believing that “rare is no longer rare” in the context of pharmaceutical development.
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