Wednesday, November 19, 2014

Should the PFF and CPF invest in pharmaceutical companies?

The New York Times is reporting that the Cystic Fibrosis Foundation stands to receive $3.3 billion in royalties resulting from their investment in a biotech company years ago. That initial investment led to ground-breaking science and a "blockbuster" drug that has a pretty amazing effect in a small fraction of people with cystic fibrosis. Critics are saying that "a higher price means higher royalty payments, [and perhaps] the foundation did not do enough to bring the cost down." 

I see that side of the argument, but it seems laughable that a non-profit foundation would have any meaningful impact in price setting by the pharmaceutical industry. The factors that determine price have little to do with advocacy. I hope people aren't missing the real message here: Investment in science and research can have a huge return. If other non-profits follow the CF Foundation's lead, we have a real chance of finding cures for terrible diseases (like Pulmonary Fibrosis!) in our lifetime. I can't wait to see how the CF Foundation uses it's $3 billion to cure CF.

What do you think? Should the PFF, CPF, and other non-profits in the PF world invest in research being done by pharmaceutical companies? 


  1. Its a hard question with no easy answer. As I understand the mission of both the PFF and the CPF is they help raise awareness (advocacy), support patients and families plus fund research. I understand the first two and they both do an admirable job. However investing monies donated for their mission statement and having that money invested in any company is different. I'm not sure I want them gambling with my money unless they have a mechanism where I can determine what they do with my donation or funds. Its a slippery slope and in the long run I feel it could do more harm than good in furthering support, advocacy and funding research.

  2. I think the answer to this question depends largely on what PFF and CPF see as their long term goals. It seems to me that their primary goal should be to no longer exist. It seems to me that huge returns on investments in pharmaceutical companies which profit from maintenance drugs but not necessarily cures and vaccines lessens the possibility that a cure will be found obviating the need for PFF and CPF. I'd much rather see them both partner with Universities and public research institutions that would be willing to make their discoveries and findings available in the public domain.

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