This year’s Rare Disease Awareness efforts have included a rare-disease pipeline overview at Pfizer’s New York offices earlier this week and an idiopathic pulmonary fibrosis awareness push by drugmaker Boehringer Ingelheim, which landed one of two FDA drug approvals for the rare disease in October.
BI’s Ofev (nintedanib) and Roche’s Esbriet (pirfenidone) were approved on the same day and were the first drugs to score this indication.
Rare-disease day is Saturday February 28, but the industry generally fills out the week and the month with events and presentations like those at Pfizer and BI.
BI’s awareness effort centers on a survey of patients and their caregivers that provides a mind-map of what it means to have or care for someone with this fatal disease.
Among the findings: it takes about about 23 months before patients receive an IPF diagnosis, almost 90% of patients had never heard of the disease until they were diagnosed, and 73% of patients and 82% of their caregivers did not understand the emotional impact the disease would have on their lives.
BI officially rolls out the survey Saturday, but BI told MM&M pre-game work included a satellite radio tour and local TV news coverage. BI is also building out a social network that will connect IPF patients with services that can help them with needs such as financial assistance and Meals-on-Wheels.
