Torment for stricken Doddie as he’s denied new drug
Rugby legend fears he’ll die of MND before NHS review
SCOTLAND rugby legend Doddie Weir has told of his anger after being denied an experimental treatment for motor neurone disease that could give him more time with his family.
The 47-year-old former lock forward revealed he had been diagnosed with the fatal nerve disease last summer.
Life expectancy from the onset of symptoms is only two to five years.
In a bid to buy more time with his wife Kathy and their three boys, Weir – who earned 61 Scotland caps between 1990 and 2000 – applied to the NHS to be put on a course of masitinib. Studies have shown the French drug slows the onset symptoms of MND.
But it is yet to be licensed for use and he was turned down when he applied to his local NHS board, which told him the decision would be reviewed in October.
Weir said: ‘When I read that I wanted to scream. By October I could be dead.’
The NHS claims the drug is still to finish its clinical trials and is not yet licensed by the European Medicines Agency. And Weir told how, because there is no licence, the Scottish Medicines Consortium – which controls drugs for use by Scotland’s NHS boards – cannot approve it for general use. As a result he had to make a special application to be treated with the medicine on a one-off basis.
But yesterday he revealed NHS Borders denied his application. In an emotional column for The Daily Telegraph, he wrote: ‘What exactly do I have to lose? When you are in my position, you need positivity. People say they don’t want to give me false hope but some hope is better than no hope.’
Last Friday he received a letter from NHS Borders with the news he had dreaded. He said: ‘The email informed me that my application was rejected. The NHS’s attitude just leaves me furious.
‘The institution as a whole is so risk-averse and so negative. When you are diagnosed with a terminal disease, there are no such things as risks. If there are side effects, I will deal with them and, if necessary, come off the drugs. Anything is better than nothing.
‘In normal circumstances a drug needs to go through certain clinical trials and there has to be a safety-first attitude. That goes out the window when it comes to a terminal disease like MND. Why can’t I be the first in the UK to
‘What exactly do I have to lose?’
take it?’ Weir, of Galashiels, Selkirkshire, broke the news of his MND last June, and he has been raising awareness since then.
A spokesman for the Scottish Medicines Consortium said: ‘We aim to issue advice on new medicines as soon as possible after they are granted a licence from the European Medicines Agency.’
NHS Borders director of pharmacy Alison Wilson said: ‘The Committee for Medicinal Products for Human Use refused the marketing authorisation for masitinib as it was of the opinion that the benefits of the drug did not outweigh its risks. This refusal was due to concerns regarding its side effects.’ Six Nations countdown