http://www.forbes.com/sites/johnlama...-impact-image/


Challenging issues arise from the venture philanthropy approach. Thoughts? Ideas?

Debi

I want the cure. If we have to pay tens of millions of dollars to international organized crime to get it, then let’s start stuffing suitcases with unmarked non-sequential hundred dollar bills and meet “Luigi” for the drop-off in the washroom of the airport.

It is what Bismarck and Kissinger referred to as “realpolitik”. There are no allies, there are only self interests.

It won't last long in this format. The world-wide medical industrial complex is going to face some radical changes. All they are trying to do is to delay the collapse as long as possible, and milk the cow for as much as they can as fast as they can.
We are not the ones who should feel ashamed for what we are doing.

further explanation of this venture, noting ...Despite the tiny number being treated, fortunes are being made.

Last month, news about success of the drug sent Vertex stock soaring more than $6 billion in a single day. That surge and a similar one last May allowed top executives and directors of the company to sell stock and options worth more than $100 million.

The Kalydeco story reveals much about how advances in medicine and escalating health care costs often go hand-in-hand. It also raises questions about conflicts of interest and where to draw the line between a charity and a profit-driven, publicly traded drug company.What happens when a disease-fighting charity dives into venture capitalism?

In the first case of its kind, the results include one of the planet's most expensive pills, huge sales projections for a drug company and windfalls for executives who sold stock in the glow of enthusiastic news releases about the drug.

Kalydeco is a breakthrough drug designed from knowledge of the genetic roots of cystic fibrosis, a lung disease that kills most victims before they reach middle age. Developed by Vertex Pharmaceuticals with a $75 million investment from the Cystic Fibrosis Foundation, it is an early example of "venture philanthropy," where a nonprofit helps finance development of a treatment in return for a cut of sales.

Much of the initial science behind Kalydeco involved nonprofit research universities and hospitals, with funding from the Cystic Fibrosis Foundation and by taxpayers through the National Institutes of Health...

http://www.jsonline.com/watchdog/wat...208027961.html

However effective a drug is, if you can't afford to use it, it's worse than useless.

When a charity funds a pharmaceutical company the contract should specify a maximum price.

John

I have very mixed feelings on this issue. On the one hand, I think the collaboration of private foundations and public companies to support the research of new drugs is fine and hopefully will excelerate the ridiculously slow process. As Bob so eloquently stated "I want the cure" and I want it ASAP. However, I'm very concerned when private funds are used to support public for-profit companies. I think foundations like MJFF and CFF are best served by supporting research at hospitals, universities and small private companies that lack easy access to capital. Pfizer is a 200 billion dollar company with 14 billion in profits and unlimited access to the capital markets. They certainly don't need the private, charitable donations made to foundations to support their ongoing research. In addition, there are any number of conflict of interest issues when combining non-profit with for-profit funds.

In either case, the financial success of the Vertex collaboration will definitely draw more foundations into the venture philanthropy game.

I continue to think the pharmaceutical industry should be nationalized. How is it ethical to make such egregious amounts of $$ off others' suffering/need for life?

wasn't amgen big pharma? abbot?
bigger problem to work on imho is finding clinical trial volunteers, thank god mjff is working on that but imho that's holding up research more than anything. if you can't get volunteers, why would big pharma be interested enough to even bother with a debate?

they can't keep taking 1-2 years on these trials, pay whomever/whatever what it takes to develop a better pd lab rat, lab monkey, lab whatever so the speed of research can be increased and researchers with great ideas can get going. possibly opening up a potential can of ethical worms here.

when i listened to the ceregene mjff webcast i don't think i heard this discussed.

btw, if you have a 401k or pension, you are likely a shareholder in big pharma, big oil, big financial institutions, pretty tough to sacrifice part of your retirement for altruism, and with our gridlocked govt, budget cuts, big pharma is likely to get bigger and hopefully better at research, so they can't be ignored..

I am not in the US so my perspective might be a bit different. Having read the article my main concern is that big companies might put potentially useful treatments on ice until foundations raise the funding needed. That seems a rocky road to nowhere. People desperate for cures pushing their personal money into ventures, as pharma hold off.

It also ignores some vital questions about the process of bring drugs to patients. It is interminably slow already, would this hasten the process or hinder it. Many trials fail when they get to the Phase 2 stage, there are questions as to why.

Drug development should be funded by government in partnership with drug companies. Government has a vested interest maintaining people in good health - they cost less that way.

Having said that there are always going to be novel ways of funding things. Venture philanthropy has been around in one form or another for a long time, so I am willing to have an open mind on it too. There are other aspects of research that need looking into too, such as what causes conditions; drug development does not really address this, and maybe philanthropic orgs are in a better place to facilitate it, due to their proximity to patients.

These are complex trade offs for sure ...

One concept at the heart of the venture philanthropy approach in drug development is an appreciation for the fact that no capital exists to take academic ideas into early stage, pre-clinical testing... so, beyond the stage typically funded in hospitals/universities. While Pfizer, for example, has a stunning amount of capital, the company wasn't until recently (and with MJFF funding as an incentive) even active in PD research at all. So, the trade off isn't how much capital within a company but rather, can you help incentivise/support decisions at the margin to whet their appetite and direct capital for work in a "higher" risk area.

For those interested, you can see a video of me talking about the our funding philosophy / the role we are hoping to play here:

https://www.michaeljfox.org/foundation/role.html

Debi

That's so cute! Can I make one too.