DRUG bosses must approve a “lifeline” drug for use on the NHS to stop patients losing the power to move, breathe and swallow, a charity has said.

Muscular Dystrophy UK is urging the Scottish Medicines Consortium (SMC) to make Spinraza available to patients with a rare muscle-wasting condition called spinal muscular atrophy (SMA).

The most acute form carries a life expectancy of around two years. More than 100 people in Scotland have some form of SMA and the charity says the drug, which is the only one of its kind, could “buy families time to spend with their loved ones”.

It is currently provided to some young patients in Scotland through a temporary scheme. The SMC will next rule on whether to approve the treatment for use on the NHS.

Ahead of a meeting with officials today, Muscular Dystrophy UK chief executive Robert Meadowcroft said: “Some children who have received Spinraza have seen their muscle strength improve and have already lived long enough to crawl, and even walk. For parents, this is priceless.

“The SMC has a chance to hand patients the lifeline they so desperately need. If they squander this opportunity to bring hope into the lives of people affected by muscle-wasting conditions, families will be made to pay a very heavy price.”

Hayleigh Barclay, from Prestwick in South Ayrshire, said the roll-out would be a “lifeline” for many. The 30-year-old, who has SMA, said: “It’s hard to overstate how much of a lifeline Spinraza would be for many people.

“I’m a very determined, ambitious person with many goals, but having to constantly battle against the effects of SMA severely impacts on your quality of life.”

The SMC said it is “currently reviewing” the issue and a decision will be published on May 7.