Sunday Life

Why not let down his tyres too?
MS sufferer denied further doses of wonder drug

By Joe Oliver
23 January 2005

A multiple sclerosis sufferer is being forced to pay almost £800-a-month out of his own pocket for a life-enhancing drug - because he can no longer walk!

Wheelchair-bound Vincent Smith, who is in an advanced stage of the crippling neurological condition, had received regular injections of beta-interferon on the NHS for the past six years.

But medical experts decided to STOP his supplies last October, because his condition had deteriorated so badly.

"It meant that, unless he paid for this drug himself, he would simply waste away," said one devastated community carer, who has looked after Vincent's needs on a voluntary basis for the past two years.

"I have tried everyone, from Disability Action to the Department of Health, and even the National Institute of Clinical Excellence, to get this decision reversed.

"But they all point to so-called guidelines, which state that patients no longer qualify for beta-interferon if they lose the ability to walk even a few paces - with or without assistance."

She added: "It's an absolute scandal and an obscene neglect of someone who is desperately dependent on this drug."

Vincent (41), a former electronics engineer, was diagnosed with MS when in his late twenties.

After diagnosis, he was determined not to become a "burden" on the state.

Even as his illness became progressively worse, he somehow managed to keep up the mortgage payments on his home in south Belfast, which he shared with his brother.

It couldn't last, of course. But his real nightmare began when he was admitted to the Royal Victoria Hospital last year with an infection.

During his stay, he was informed by his consultant that, under guidelines recommended by the Association of British Neurologists and the Institute of Clinical Excellence, he could no longer be prescribed beta-interferon.

His carer, who asked not to be named, told us: "The injections of this drug enabled Vincent to have a small swallow, and even speak in a whisper, because his vocal chords are badly affected.

"It meant he had some quality of life, and, with limited use of his hands, even a little independence. It also helped him endure the constant misery and pain he suffers.

"But now he has been forced to go private and buy the drug at a cost of £789, which comes out of his total monthly income and disability allowance of just £900.

"I don't know how long he can afford to keep going and I can't believe that any individual, particularly one crippled with MS, could be treated in such a callous fashion."

One explanation could be contained in the guidelines of the National Institute of Clinical Excellence, a London-based body that works on behalf of the NHS, making recommendations on treatment and care.

One chapter states: "On the balance of their clinical and cost-effectiveness, neither beta-interferon nor glatiramer acetate is recommended for the treatment of multiple sclerosis."

A Department of Health spokesman at Stormont said consultant neurologists prescribed beta-interferon in accordance with Association of British Neurologists guidelines.

One criterion for halting treatment was, she pointed out, the "loss of ability to walk, with or without assistance, persistent for at least six months."

Last night, South Belfast MLA Mark Robinson said he would be contacting Northern Ireland's Chief Medical Officer, Dr Henrietta Campbell, to seek answers.

"I know Vincent and I am familiar with is case," he said.

"It seems to me that the medical profession is prepared to abandon him to his fate. It is a disgraceful decision and I'll be asking Dr Campbell, who is adviser to the Government on all health matters, to explain why this wholly inappropriate decision to deprive him of this drug was taken."

slnews@belfast telegraph.co.uk

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