I am disgusted at the misplaced GREED of Cancer Research UK

[BonyM]

Dh is a research scientist and had applied to the Leukemia Research Foundation (who are controlled by CRUK) for a grant which was subsequently approved subject to agreeing terms.

He had an email from them today, to say that they cannot now release grant funds to him because "LRF is unlikely to accrue any financial benefit for an outlay in excess of £250K".

Basically, they wanted dh's university to agree that in the event of the drug making it to market, they would get 50% of the income. Note, income, not profit, so if the drug were successful and made for example 1 billion pounds, CRUK would take 0.5 billion pounds, even if it cost 0.5 billion to develop. Because of a previous deal, the technology is now owned jointly by the university and a commercial company so it was impossible for the university to agree to this.

Instead, LRF were offered, initially, double their grant back if the drug became marketable, and then, when they refused that, "milestone" payments at each stage of development. Basically, they refused to give the grant unless they were promised 50%.

Am I the only person to think that this is a totally inappropriate stance for a charity to take? What about potential patient benefit? All they seem interested in is profit.

Sorry for the rant, but I really felt that other people should know how they operate, that patients are being denied the possibility of new treatments because the charity won't get any financial benefit (of course, 500K is no benefit!).

I am so .

Shameless bump - want people to know about this.

its understandable that they will want to see some return from their funding..it does seem somewhat excessive albeit unreasonable though, maybe a ploy to avoid giving the grant in the first place?

Absolutely horrified.Much respect to your dh on being involved in leukaemia research.As a health worker based upon a ward treating individuals with a haematological malignancy he has my admiration.

I used to give them money every month by standing order but they began to harass me with constant phone calls asking me to give more despite me telling them that I wasn't working and I got quite upset in the end because they wouldn't leave me alone. Not a good way to operate a charity.

schneebly thats awful.
bonyM-its so sad that this important research has fallen fowl of their greed, my best friends daughter has battled leukemia since she was 2, so its a subject close to my heart.

apologies for any dodgy spelling..am half asleep

Thing is Spacecadet, my dh actually used to sit on the funding commitee for CRUK and they would give huge funding to research which was not likely to lead to any income generation (ie. basic biology, not potential new medicines for patients), it is only because dh ticked a box on the grant application that stated the research could have commercial possibilities that they now want this 50%.

it seems horribly short sighted to take such a view. If not for profits wont put up the cash to fund this kind of valuable research what hope is there. surely the benefit of independent research not entirely funded by drug companies- and headed in the direction that suits them can be seen. How frustrating for your dh too - thinking he had funding in place
(my dh is a research scientist(different field) will ask if he has come up against this when he gets home)

I don't think they should expect a return from their funding - they are a charity, not a business. Surely their priority should lie with advancing medical knowledge. I assumed their decision making on who received funding would be based on either how expensive the proposal was or what chance it had of working - not what their profit margin could eventually be.

So should we all be asking for a % share of any possible profits that could come out from our donating x amount to cancer research.

Sick sick sick, I shall not be donating to them ever.

a charity getting financial benefit is a good thing, surely?

better than drug companies getting it

I think charities are increasingly having to play hardball because that's the way the world is getting to work

I mean actually I admit I know bog all about it and am talking out of my wotnot so don't shout at me too much

It does sound an excessive amount, but I don't think that they should be expected not to get some return for their investment even if they are a charitable concern - actually, make that especially as they are a charitable concern because their money is hard earned and has to go a long way. But yes, on the face of it, it seems greedy.

I wonder how other research bodies or similar companies handle this kind of thing? Maybe it's standard practice?

What I do know is that without Cancer Research UK my dad wouldn't be here, so it's something that's close to my heart and I would hate to think that this practice would stop people from donating to the charity. It saddens me when they push so hard for their supporters to give more and more money too, as they did with schneebly.

Have just mentioned this to dh and had a row because he disagrees and thinks they are entitled to expect a return. He thinks it is completely reasonable...

Not arguing that they shouldn't get some return, but to refuse the grant because they couldn't get 50% is, I think, entirely wrong.

They were offered double their grant back if the drug were successful. That's a pretty good return, no?

I'd much rather have them hassling drug companies than hassling schneebly. And they have to get their money from somewhere.

Problem is Cappuccino, is that a lot of potentially good drugs never get to the market because there is not enough profit in them for the drug companies. That's why rarer diseases, or "unfashionable" diseases don't have any treatments (or not good ones) - not because there are no potential treatments available but because the expected profits from the drugs are not big enough.

Shocking, isn't it?

OK, but who would get the profit from commercialisation?

The charity funds all or part of the research (out of interest who is putting up the rest of the funding?). Lets say that the research results in a successful (and profitable) drug. Then either the university plus this commerical company gets the profit - the commerical company's share of profits go to its shareholders (so why don't they fund the initial research?). Not too sure about the univeristy funding, but presumably new shareholders, so it is ploughed back into higer education or similar research projects.

If LRF gets the profits then the profit is ploughed back into cancer research. Isn't that a good thing?

Have to say that the previous deal seems a bit suspicious - that all technology (including that yet to be developed) is owned by another company.

FWIW I agre that 50% of income is a bit cheeky, but then to be frank so is asking the charity just to accept £500,000, if there is a profit of £500,000,000.

How much is the total funding that is being asked? Ie what proporation are LRF putting up?

true boney m - my dh does malaria research and there is no interest from the drug companies in finding a cure becasue the drugs to treat the disease are so profitable for them

Ladymuck - the shareholders do not have any money to fund the research. One of the shareholders is my dh, the inventor of the drug. The whole funding business is immensly complicated - 250K is a tiny amount compared to the total that would be required to get a drug to market (we are talking millions).

Further funding would usually come from venture capitalists who, in return for putting money in, want a share of the company/profits (and thus, each time money is put in, the existing shareholders holding is diluted). Therefore, if a charity wants 50% of income, this would give very little room for VCs to invest (and take share capital), making progression of the research impossible.

Previous deal is not suspicious - that's how a patent works - you have to cover invention of drugs close to the original otherwise a competitor could come along, change one molecule and profit from the original inventor's years of work.

Am only scratching the surface here - the whole thing is very convoluted. To get a drug to market takes an average of 12 years and millions of pounds, and most inventors (like my dh) will never be successful, mainly due to lack of funding.

Incidentally, if dh was in this for the money, he wouldn't be working for a university .

Oh, and £500,000,000 was just a figure plucked out of the air!

Oops, posted too soon.

Point I was trying to make was that a lot of work and money could go in to developing the drug and the people involved in that work could potentially walk away with very little, LRF getting all the financial benefit for a small monetary investment.

"Because of a previous deal, the technology is now owned jointly by the university and a commercial company so it was impossible for the university to agree to this."

So your dh is the shareholder of the commerical company - so in effect the technology is owned by your dh and the university?

I appreciate that the effort is long-term, but even so, if someone is putting up the funding, then they would look at a commercial return. What your dh will probably have to think about is what would anyone else expect for that level of funding? If the only block is the ultimate level of potential return, then I'm sure that your dh will be able to continue to negotiate.

My dh is a minor shareholder. If up to him he would continue to negotiate (as would the other shareholders). Profit is not his driver - helping patients is. Note that the shares are currently not worth anything (well, pence) as the

Unfortunately the deal is non-negotiable from the LRF's perspective - they want 50% or nothing. As I previously stated, to give them 50% would preclude them from obtaining funding from other sources such as VCs, and although £250K would be good start, it is nowhere near enough to progress a drug to the clinic.

I just feel strongly that patients are being denied the chance of a possible new, more effective drug, because the charity are unable to see further than their potential financial gain.