The Cystic Fibrosis Foundation (“CFF”) has total annual revenue of over $300m. It has total assets of $250m, including an investment portfolio of $160m and cash equivalents of $40m. By comparison, the UK’s CF Trust is far smaller with c. £9m in annual revenue and total assets of c. £10m.
On 7 December 2012, CFS joined forces with Walgreens, the largest drug retailer in the US. Since the insurance company payers often dictate which pharmacy a patient must use for their prescriptions, patients may feel they are subject to a form of monopoly. The CFF must have some fascinating and very complicated discussions with payers in relation to new drugs like Kalydeco where it has a royalty entitlement. They must negotiate the price alongside the pharmaceutical partner and then also try to persuade the payers to use their pharmacy services in preference to other independent pharmacy service providers. They have a lot of different interests here but it is difficult to see how this arrangement gives the CFF any negotiating power or, indeed, any incentive to keep prices down. Clearly Walgreens have no philanthropic duty towards CF patients. This complex web of relationships may or may not be in the interests of patients in the US. It is important because these pricing discussions have significant consequences for people with CF all over the world.
Given its other roles, it looks like the CFF's role as a provider of specialst CF pharmacy services might create a conflict of interest.