Shire plc has launched a Facebook page in honor of National Gaucher Awareness Month – a move designed to link the name of the company, and the name of the rare disease its drug, VPRIV, is treating. The drug sped to approval in March because the FDA urgently needed to blunt against shortages of a rival drug, Cerezyme, made by Genzyme Corp.
For every visitor to the Facebook page who “Likes” it, Shire, which is based in the U.K. but has headquarters for its Human Genetic Therapies division in Massachusetts, will contribute $1 to the National Gaucher Foundation. So far, the page has 175 “Likes”, but it’s only been three days.
The question is, could an appeal to the masses ever hope to translate into new customers for VPRIV, which treats a disease that affects only a very small number – 1 in 50,000 – of people worldwide?
Possibly. Because the rare disease is often misdiagnosed or diagnosed very late, greater awareness of the disease, especially in the health care provider community, could lead to more correct diagnoses and more potential patients. But right now, Shire doesn’t need more customers. In June, the company established a waiting list for new patients who want to take the drug, as they work to ramp up capacity in Lexington.
What Shire does need is to stem possible attrition from its drug as the Genzyme shortage eases. Genzyme announced last week that U.S. Cerezyme patients will begin to receive their full doses, and no one knows how many of the 850 patients worldwide now on VPRIV could switch back to Genzyme’s drug.
Some Gaucher patients are torn between loyalty to Genzyme – the company that put Gaucher on the map – and appreciation for Shire, which has stepped in to help them when Genzyme could not.