Tuesday, August 2, 2011

Venture Philanthropy

I wanted to share an email i received from the Advocacy Chair about a few articles focusing on CF that were recently in Nature Magazine, which will be shared with some congressional offices over the next several weeks during the Make Every Breath Count campaign. They discuss the Foundation’s creation of “venture philanthropy” as a successful way to prompt the development of treatments, intellectual property issues raised by venture philanthropy partnerships, and the reasons why researchers should welcome this strategy. If anyone reading this works for a biotech or pharmaceutical company, your support and consideration in participating in such a partnership would be awesome.

"Venture philanthropy” is a concept developed by the Cystic Fibrosis Foundation where a non-profit organization partners with a biotech or pharmaceutical company and contributes funds to the company’s research into disease-specific treatments. Developing rare disease drugs is a risky undertaking for a drug company, as it can be expensive and the probability of a return on investment can be low. Venture philanthropy helps to lessen this risk and has led to the development of over 30 drugs to treat cystic fibrosis. It is now widely used in the non-profit community.

The first article, entitled “Charities seek out drug royalties,” explores how the CF Foundation and other non-profits retain certain rights to the treatments they help fund and discusses a now widely-used legal strategy crafted by CFF to ensure that a therapy can continue to advance even if the original developer cannot or will not continue its work. The Foundation’s foresight in not only funding drug creation but also exercising control over the development process has led to breakthrough achievements, including VX-770, and any royalties earned by CFF are funneled directly back into the Foundation’s mission of supporting vital research and drug development.

“With strings,” a Nature Magazine editorial supporting venture philanthropy, including philanthropies’ retention of intellectual property rights, cites the CF Foundation as the pioneer in this field. According to the article, “When the Maryland-based Cystic Fibrosis Foundation invested in Californian biotechnology company Aurora Biosciences in 2000, it launched a revolution.”

I haven't had the opportunity to read these articles myself as I'm not a subscriber to Nature Magazine, but if I can get my hands on them I will certainly share.

I other news, we are heading out of town for our family vacation to Charleston, SC in just under two weeks. Naturally, we are all getting sick with some sort of head/chest cold. Ella and Lily got it first. Today I feel lousy. Drew woke up with a gunky nose and I'm certain he's heading down the same path. I'm trying to decide if I should call the doctor and see if we can get him on some antibiotic prophylactically or if I should wait him out and see if this just passes. What I really don't want to happen is to be running all over creation next Thursday before we leave and end up needing extra treatments and medications while we are gone. I really hope it just passes. I think I'll give it another day and see what happens.

I'm happy to report that the last time we were in the hospital was 10 whole months ago! My goal is to not be in the hospital at all in 2011 (or 12 or 13, etc., etc., etc.). Health this summer has been pretty good. I'm not gonna lie, I'm not looking forward to fall and the start of preschool and winter germs. It was a long cold season last year. The hope is that Drew (and Ella and Lily) have built up some immunities and won't get as sick this year. The other hope is that with the improvement in Drew's malacia, he'll have a little more success clearing secretions when he's sick. I guess time will tell.

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