I was thinking about this recently. A common claim is there is insuficient financial incentive for drug companies to invest in MND research and this may be true. However, there is a significant incentive for governments to invest.
Without breaking it down the combination of disability benefits, unemployment benefits, carer costs, equipment and medical services costs, loss of income tax revenue the annual bill for me is at least £50k per annum. In the uk there are around 4000 sufferers. So based on a conservative estimate, that is £200 million per annum. In the States, based on the costs being similar, that equals £2 billion. So worldwide it might be £4 billion possibly
I appreciate that government health and social funding is dramatically different in the US so I would welcome any feedback on typical patient costs
I don't know how these figures compare with cancer care or MS or Parkinsons. Obviously we constitute a much smaller population and have relatively short duration of care but I suspect that proportionally it is an expensive illness. Now whilst financial investment is no guarantee of finding a cure, not investing IS a guaranteed way of never finding one. The example of cancer research demonstrates that progress is made when money is thrown in the right direction.
The prevelance of cancer at least creates massive public awareness and vast charitable funding which, although not resulting in a cure for all, has significantly improved the chance of survival. I don't believe MND awareness will ever reach the point that it will raise enough charitable funding to make an impact on the research required to find a cure and the past 20 years have proven that pharmaceutical companies aren't sufficiently motivated.
So if governments don't start changing their approach, billions will be spent every year for the foreseeable future. Even if this funding only resulted in finding a drug that halted progression, the extra cost burden created by ongoing care for current patients would be greatly offset by the longer term savings keeping future sufferers working and able.
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Hi Steve, been catching up on your blog which is great reading as ever. Just read this one out to Andy - obviously pretty pertinent to him. Apparently GSK set up a rare diseases initiative a few months ago, and Pfizer have very recently followed suit. Perhaps there's a dawning realisation that the blockbuster model of drug discovery isn't sustainable? Big pharma appear to now be working on diseases with unmet medical need, so let's hope they can combine their money with the expertise of the academic researchers who are still doing the science. Think your thoughts on government investment are very interesting - not sure this bunch of clowns who've just got in will be able to think that imaginatively, unfortunately (you knew I couldn't resist an opportunity, eh? ;-) Love, Samx
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