on a similar topic 1eye, you'll probably find this of interest, the DMD situation in the UK:-http://www.telegraph.co.uk/health/healt ... ients.html
In case you can't read the link I'll copy and paste below:-
NHS 'has wasted millions on MS drugs which did nothing to help patients'
The NHS has wasted millions of pounds on MS drugs which did nothing to help patients, according to experts.
They called for a Government-backed scheme to provide the drugs to be scrapped and called for a public inquiry.
In total at least £250 million could have been saved if a review had been carried out on the “costly failure” after its first two years, they warn.
This money could have been used to help other health service patients, including those with multiple sclerosis.
Charities backed the call for the scheme to be abandoned.
Set up in 2004 it was intended to allow expensive MS drugs on the NHS.
A key feature of its design was that the price of the drugs would be cut if they proved ineffective.
However, there has been no price reduction over the past six years, despite signs that the drugs were not working.
Recent research results show that patients actually did worse on the drugs than if they were given a placebo.
Prof George Ebers, from Oxford University, one of a number of MS experts who have written articles in the British Medical Journal (BMJ) criticising the project, said: “The scheme may have been well intentioned, but perhaps the public interest would be served by an independent inquiry.”
More than 100,000 people suffer from the devastating disease in Britain.
Patients experience difficulty walking or speaking and there is currently no known cure.
MS itself is caused by the destruction of myelin, a fatty protective sheath surrounding the body's central nervous system.
The MS society backed calls for the scheme to be abandoned.
Simon Gillespie, the charity’s chief executive, said that while it had given many patients people access to drugs it was “stuck in the past and has failed to take account of the most up to date evidence and practices.”
He added: “We are calling on the new government to work to ensure that people with MS across the UK have equity of access to the right drug, at the right time in line with current evidence.
“This cannot be achieved through the current scheme."
The four drugs involved Avonex, Betaferon, Copaxone and Rebif, cost around £8,000 per patient per year.
In 2002 they were rejected for use on the NHS by the National Institute for Health and Clinical Excellence (Nice), the Government’s drugs rationing body, because they were too expensive.
However, the following year the Government and the pharmaceutical companies involved agreed to start a “risk sharing” scheme, which saw an initial reduction in the price with the promise of more to come if the drugs did not work very well.
Around 10,000 patients in Britain are thought to have received the drugs thanks to the scheme.
A Department of Health spokesman said: "The risk sharing scheme has brought many benefits to MS patients including better access to drugs, a stronger network of MS specialists including specialist nurses and a better platform for MS research.
“We continue to monitor the progress of the scheme to ensure best value for money.”