EPP sales (1 and only specific approval for scenesse -no off label option available -and locked down to costly special centres) have plateaued, even though <10% of sufferers have gained access (over 5-10 years) to the ONLY drug that works for their debilitating disease -so effective it’s literally life changing!it is certainly hard to understand how the EPP rollout could be so poorly managed. 95% long term adherence, no significant side effects but less than 10 % market penetration. Wolgen and hay tell us this is better than they expected. An embarrassing disgrace.
Ann: CLINUVEL Newsletter II - March 2024, page-20
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