MS patients denied talks

Beta interferon has 'modest clinical benefit' says NICE

The government's drug watchdog has turned down a request to meet patients who are suffering from multiple sclerosis.

In a letter to the Multiple Sclerosis Society on Friday, the National Institute for Clinical Excellence (NICE) refused to hold a meeting with patients.

The request was made after a decision by NICE to recommend that the MS drug beta interferon is not made available, in future, to NHS patients.

The institute ruled in a preliminary assessment of the drug that it had "modest clinical benefit" and was not cost effective.

The decision sparked outrage among patients and support groups across the UK.

This has been a very black week indeed for people with MS

Peter Cardy, MS Society

The MS Society wrote to Professor David Barnett, chairman of the Institute's appraisal committee, which made the original decision, requesting that its members meet patients suffering from the disease.

However, in his reply Professor Barnett said NICE policy was to invite patient advocates rather than patients themselves.

"Our job is to work in the interests of all patients who need access to technologies which are both clinically and cost effective," he wrote.

"To do this we need evidence drawn from the experience of the wider community of patients, both in the form of experiential analysis and clinical studies. We look to patient advocate groups for the former."

'Brutal ban'

Peter Cardy, chairman of the MS Society, criticised the decision. "This has been a very black week indeed for people with MS.

"First they hear NICE intends to propose beta interferon should not be funded on the NHS. Now they are told they cannot have their say."

He added: "The committee need to hear for themselves the authentic voice of people with MS."

Mr Cardy described the committee's decision to ban beta interferon on the NHS as "brutal and indefensible". The said it made a mockery of the concept of equality to healthcare.

"The idea that those who have been lucky enough to receive the drug will continue to enjoy its benefits while others go on suffering sets the postcode lottery in stone.

"It makes a complete mockery of the government's commitment to equality of access to healthcare."