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CFF 3.3 billion dollars
- Thread starter Rebjane
- Start date
Aboveallislove
Super Moderator
Thanks so much for posting! And wow! 3.3 billion. That is going to get 100% of CFers a cure much sooner!
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windex125
Guest
I am not sure why but I feel quite angry abt this all, more money going to billion dollar drug companies to make even more money. I don't think the foundation does enough for us as it is. My center has been cutting staff, they are over worked, underpaid. They all have such a big commitment to us but you have to go to one bldg. for a xray, another for different tests. Why can't they put some of this big money into in establishing great clinic facilities for us. Also they have been saying 30,000 are effected for more than 40yrs now enough already... get the numbers right we are way over 30,000 When we got Pulmozyme I was over the top excited as I call this my liquid gold. My insur. company is charged $3000 a month for just this one drug, I take 3-4 different things, and when I am on IV's it's thousands of dollars. I hv great coverage, but also adding up all the out of pocket expenses goes into the thousands as well for a lot of us. Also what abt some of us that are not covered to hv this newer drugs they are coming up with. I don't know I feel it's bittersweet. But my heart still goes out to the younger people and babies, I have hope for them always. Maybe I am wrong to have these feelings??? Pat/59
I know how you feel... I am grateful for the work they have done but also feel frustrated by the slow price of change and the huge cost of new drugs. I understand it takes millions and I know Vertex is still running at a loss but wonder could Vertex not have come out with a decent profit margin with at $150k a year? Commentators on NPR say the CFF may have a conflict of interest and did not push hard enough to get the cost of Kalydeco down because they benefit via royalties. I also emailed CFF for help with getting kalydeco off label but got no response.
My CF center is also pretty run down in terms of the facilities - but that doesn't bother me. I just hope CFF will spend the money responsibly - on more R&D to find a cure - and not on fat paychecks to the CEO. I will be watching them.
Windex I am interested in the number of people with CF. If it was 30 000 years ago it must surely be more now, given the growing US population.
My CF center is also pretty run down in terms of the facilities - but that doesn't bother me. I just hope CFF will spend the money responsibly - on more R&D to find a cure - and not on fat paychecks to the CEO. I will be watching them.
Windex I am interested in the number of people with CF. If it was 30 000 years ago it must surely be more now, given the growing US population.
The CFF funded the project in exchange for the rights to royalties of any drugs showing efficacy. In essence, the CFF said, "We will hire your research facility and if you find medications with results, pay us back through royalties." That was the deal. If they didn't offer research money to the facility there would be no research and no drugs. With the amount of cash available now, their plans are to accelerate the process of finding a cure for CF. Think of the research that amount of cash is going to fund.
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Hail2Pitt
Guest
I agree that this is just awesome news. Drug companies aren't philanthropists - they're in it to make money. Could the CFF put more pressure on them to lower their profits? I really have no idea - I don't know how much leverage they actually have, and I don't think any of us do. Drug companies are profit-driven, and their number one priority is to make money for their shareholders. Thus, they'll make their profit margins as high as they can get away with. It doesn't mean we have to like it, but it's the reality.
Should the senior management at CFF get a Christmas bonus this year? Heck yes they should! They brokered an absolutely amazing deal that, long-term, should end up changing all of our lives for the better. The CFF may be a non-profit, but it's still business. Do we want the brightest minds we can get running our foundation? If so, I believe we need to be willing to pay them, of course within reason.
This is a game-changing amount of money. The next several years should be very interesting......
Should the senior management at CFF get a Christmas bonus this year? Heck yes they should! They brokered an absolutely amazing deal that, long-term, should end up changing all of our lives for the better. The CFF may be a non-profit, but it's still business. Do we want the brightest minds we can get running our foundation? If so, I believe we need to be willing to pay them, of course within reason.
This is a game-changing amount of money. The next several years should be very interesting......
Nice to see the CFF getting a huge amount of money. But If you follow the money trail it comes back to the high price of insurance that we all pay. My wife basically works to pay for our insurance. I suppose that if the CFF foundation did not get the money it would have been in some other investment companies hands, who did not give a crap at all about finding a cure/treatment. Also taking a lump sum payment frees the CFF from any appearance that they want to maintain an inflated the cost of Kalydeco.
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stranger
Guest
While I am thrilled about the news, I am massively disappointed in Mr. Pollack's article. Mr. Pollack, when you report for the NY Times and are completely out-reported, out-written by the Wall Street Journal, I would suggest that is a time for some deep introspection.
When you also take into account that Mr. Pollack was ONE OF THE FEW who wrote about the Aurora acquisition by Vertex all those years ago (it was the Aurora team that incubated the CFTR 'toys' we have now), it highlights even greater how poor the article was.
Can't help but wonder if the poor plight of the NY Times is affecting someone as distinguished as Mr. Pollack to sensationalize their stories.
Very, very poor.
Congrats to the CFF!
When you also take into account that Mr. Pollack was ONE OF THE FEW who wrote about the Aurora acquisition by Vertex all those years ago (it was the Aurora team that incubated the CFTR 'toys' we have now), it highlights even greater how poor the article was.
Can't help but wonder if the poor plight of the NY Times is affecting someone as distinguished as Mr. Pollack to sensationalize their stories.
Very, very poor.
Congrats to the CFF!