Trial volunteers 'left in lurch'

NewsBot · Dec 24, 2007

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The BBC are reporting:
Trial volunteers 'left in lurch'

Patients who take part in drug trials are being left in the lurch once the research is completed, doctors warn.
People assume they will be given the treatment indefinitely with the NHS picking up the bill, the Faculty of Public Health said.

But primary care trusts have limited budgets and cannot pay for treatments before the effectiveness has been established, they stressed.

Industry experts agree patients needed to be aware that treatment may end.

The warning comes after a row over funding for a new drug called eculizumab for patients with a rare genetic disorder, paroxysmal nocturnal haemoglobinuria.

It costs £300,000 per patient per year and there were 40 patients in the trial.

Dr Jonathan Howell, a consultant in public health in the West Midlands, said a health technology assessment was being done to look at how effective the drug was.

But in the meantime, PCTs were being put under pressure to pay for the treatment.

There have also been recent battles over access to 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.

In a statement issued with the Association of Directors of Public Health, 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. ...
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