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Friday 28th October 2016

Warning over drug trial patients

27th December 2007

Doctors have raised concerns that patients who take part in drug trials are being left in the lurch once the research is completed.


The Faculty of Public Health says that patients tend to assume they will be given the treatment indefinitely with the NHS paying for it.

But the body stresses that primary care trusts have limited budgets and cannot pay for treatments before the effectiveness has been established.

The situation was brought into focus over to recent cases. In one, there was disagreement over funding for a new drug called eculizumab for patients with a rare genetic disorder, paroxysmal nocturnal haemoglobinuria, with 40 patients involved at a cost of £300,000 each a year.

Another case involved access of the multiple myeloma drug lenolidamide.

Some patients who took part in the extended access trial have been able to continue on treatment where others found their PCT would not fund it.

The Faculty warned that patients build their hopes up about the outcome of the treatment and believe they will be able to continue taking the drugs.

They said it needed to be made clear what will happen once the research period ends.

Richard Ley from the Association of the British Pharmaceutical Industry, said he agreed patients needed to be well-informed about the fact that the treatment may end.

He said: “Our own guidelines say that it should be made clear either in the trial protocol or the patient consent form what the position is regarding the supply of the medicine at the end of the trial.?


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