About 15 years ago, the Cystic Fibrosis Foundation made what was considered a risky foray for a nonprofit organization into the world of business. It began giving money to a small biotechnology company to entice it to develop drugs for the deadly lung disease.
But that funding, a total commitment of $150 million, has now paid off enormously. The foundation is to announce on Wednesday that it will receive $3.3 billion from selling the rights to the royalties to those drugs. That is 20 times the foundation’s budget last year.
-The New York Times
Read the Full article here: http://www.nytimes.com/2014/11/19/business/for-cystic-fibrosis-foundation-venture-yields-windfall-in-hope-and-cash.html?smid=fb-share&_r=0 When I first heard this news this morning, I thought “This is great!” after only quickly reading the announcement on the CF Foundation’s website. But, this article raises some good points regarding the price of these drugs and the conflict of interest it creates by providing a profit motive. So, obviously, it leaves some questioning whether or not it was a good move.
But, I’m idealistic. And I’m also a realist, and I know a teeny tiny bit about economics, but not nearly enough to call myself an expert… just enough to have common sense… so here are my thoughts as to why this is an incredible step in the right direction.
1) The $3.3 billion that the CF Foundation received was TWENTY TIMES it’s budget last year. Now, assuming this money *is not* used in the wrong way… like over paying top executives… that’s a shit ton of money that will go towards more research and not towards greedy, evil drug companies who (beyond) profit off of our sickness. I’m not sure if you noticed, but developing a drug costs A LOT OF MONEY, and, with such a low population of people with CF, companies need to know they will have a return on investment in order to even consider it.
2) In the article, Vertex pretty much said they probably wouldn’t have done the research that lead to Kalydeco if the CF Foundation didn’t pay for it. What the CF Foundation did in the first place is HUGE, unprecedented, and “wicked smaht.” The fact of the matter is, as much as we want to believe people will just do things out of the goodness of their heart… that isn’t possible without massive amounts of dough. And the CF Foundation gave them that dough, and that’s incredible, unprecedented…. okay you get the point. I think the fact that they were wiling to put all of their trust in this one company to produce something big says a lot about the CFF’s goals: they want a cure and they will do something unheard of to get it (even if it’s unpopular).
3) We don’t have time. As much as the CF Foundation does for fundraising, and research, and all of this amazing stuff, $3.3 billion dollars is quick money that they probably would have never ever seen if they operated like a typical non-profit disease-centered organization. Why? It’s sheer numbers. Cancer organizations raise tons of money because everyone knows someone with cancer. Yet, we struggle with CF because it is such a small population. Don’t get me wrong, the CF Foundation has done incredible things with the money they have raised… like things that have kept me alive for 24 years. So imagine what they could do with 20x that amount of money.
4) Which brings me back to being a realist idealist. I have So. Much. Friggen. Hope. We can argue about why this large amount of money is wrong, we can argue about the way the Foundation spends its money, we can argue about the huge costs of these drugs. But at the end of the day, people are dying. WE don’t have time to figure out the perfect way of going about funding the research for a cure, of treating this disease, and extending our lives. The CF Foundation is doing what they can, and what WORKS, to cure this thing…. or at least to try to make it into a disease we can live with. It leaves a bad taste in our mouths when we talk about this much money surrounding our LIVES, but its reality. Money talks, and in this case, it’s money that might save our lives. And our lives are worth something much larger than $3.3 billion dollars.
http://thesowhatlife.com
