Borders rugby legend Doddie hits out at NHS for rejecting bid to be MND drug guinea pig

Doddie Weir at a fundraising ball held in aid of his MND research foundation at Kelso last Friday.
Doddie Weir at a fundraising ball held in aid of his MND research foundation at Kelso last Friday.

Borders rugby legend Doddie Weir has told of his anger at being denied a drug he had hoped might keep him alive longer.

The 47-year-old, diagnosed with motor neurone disease at the end of 2016, wants to be a guinea pig for a French drug he believes could slow the progress of the incurable wasting condition, but health bosses have rejected that plea.

Doddie with his family at the ball.

Doddie with his family at the ball.

In his fortnightly column for the Daily Telegraph this week, the former Scottish international, capped 61 times between 1990 and 2000, hits out at NHS Borders for refusing to give him the chance to try out a French drug not previously used this side of the English Channel.

It has told him it will reconsider its decision in six months’ time if he is still alive then, however.

“I had applied to receive a course of a French drug called masitinib. Studies have shown that it slows the effects of Lou Gehrig’s disease, but it has never been used in the UK before. My application was rejected,” writes the father of three, of Blainslie.

“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 longer such things as risks. If there are side-effects, then I will deal with them and, if necessary, come off the drugs. Anything is better than nothing.

“When I read that they will review my application again in October, I wanted to scream. By October, I could be dead.

“I understand that in normal circumstances, a drug needs to go through certain clinical trials before it is released to the public and there has to be a safety-first attitude.

“That goes out of the window when it comes to a terminal disease like MND.

“This particular drug may not work, but there’s a few things that suggest it might.

“Why can’t I be the first in the UK to take it? What exactly do I have to lose?

“In this country, the only drug that the NHS will permit you to take for MND is called riluzole, which is now 22 years old.

“That there have been no further developments in nearly a quarter of a century displays a shocking callousness and indifference towards MND sufferers.

“I refuse to believe that more cannot be done to combat this wicked disease.”

Doddie, a lock for Melrose from 1991 to 1995, has also been seeking possible treatments in the US.

Former Sale Sharks owner Brian Kennedy arranged a trip to America for him last month after hearing of his plight, and Doddie says he has been heartened by the positive attitude of medics there.

“He put me in touch with some MND specialists, and the first thing they said to me was that we are going to try everything we can to help you,” he writes.

“After months of hearing ‘we can’t do this’ or ‘you can’t do that’, it was wonderful to hear someone say what they can do for you.

“When you are in my position, you need positivity. You need something to cling on to.

“People say they don’t want to give me false hope, but some hope is better than no hope.”

NHS Borders’ director of pharmacy, Alison Wilson, said the European Medicines Agency’s committee for medicinal products for human use had refused authorisation for masitinib in May and September last year, saying that its benefits could not be proved to outweigh its risks, meaning that Doddie’s request could not be granted.

Since being diagnosed with MND, the former Newcastle Falcons star has set up two charities, one of them, the My Name’5 Doddie Foundation, to fund research into the disease.

For further details of the foundation, given a £250,000 boost by a fundraising ball at Kelso’s Springwood Park last Friday, go to myname5doddie.co.uk

To read his Telegraph column, go to www.telegraph.co.uk/rugby-union/2018/01/30/nhs-told-methey-would-review-application-october-wanted-scream