Orphan Diseases — Go Beyond Pharma 101
October 20, 2015
Online: October 19, 2015
Print: October 2015
By Brenda Snow
Why orphan diseases are different
Orphan diseases hold a special status with pharma companies, because regulations encourage research and development and because each patient on treatment is a high-lifetime value customer. When a few individual customers generate a large proportion of revenue, companies should go out of their way to make sure these customers are happy and stay loyal. Neglecting patients is not just morally wrong—it’s bad business as well.
The solution to providing orphan disease patients with the white-glove service they deserve is co-creation, i.e. active patient outreach and collaboration. This forces us to redefine professionalism as something that does not avoid emotional connections, but kindles it. Something that does not treat patients as anonymous “talent” but as the key stakeholder in healthcare.
Work in the rare disease space also has to take advocacy into account: Non-profits dominate the public rare disease discourse, so companies can only have a marginal share of voice if they don’t co-create. And where non-profits are non-existent, industry has an even greater responsibility to give patients that voice they desperately need.