AN NHS ‘backtrack’ means a crucial drug will not be available for hundreds who suffer from a degenerative condition.

In May the National Institute for Health and Care Excellence (NICE) released a statement that Spinraza, currently the only available treatment for a degenerative neuromuscular condition, had been approved on the NHS.

During the initial trials the drug was seen to have so many physical benefits for the participating patients that the clinical trials were stopped early.

It was deemed “unethical” to allow those receiving the placebo drug to continue in the trial.

Spinraza is a drug for those who suffer from Spinal Muscular Atrophy (SMA), a condition that affects one in 8,000 people.

There are varying severities of the disease, which means children lose the ability to walk, breath, and swallow.

The most severe sufferers of the condition often die before they reach two years old.

However, in the clinical trial, the progression was not only halted, but reversed, with some type ones - those with the most severe form of the condition - sitting, crawling, and even walking.

This drug has been approved in America for almost three years, and having seen the effects, the UK SMA community campaigned to make Spinraza available on the NHS.

The proposal was rejected four times over two and a half years, while those with the condition watched over 20 European countries approve the treatment.

In May when Spinraza was released NICE stated it was being made available for “all those who would benefit” from the drug in the UK, the community of sufferers rejoiced.

In NICE’s statement it was said that the final Managed Access Agreement (MAA) would be released on July 26, from which point those with the less severe types of the condition could start treatment.

But those with the highest needs would be able to start receiving the drug immediately, as they recognised the urgency for access.

Simon Stevens, head of NHS England, said that “The NHS has now reached one of the most comprehensive deals in the world,” and NICE stated they would soon “roll out” Spinraza.

But the elation was short lived when it emerged from the MAA that large groups of people with SMA would not be able to receive the drug under the entry criteria.

NICE acknowledged that the original information on the NICE website “was not clear enough” about who would benefit.

An appeal was put through shortly afterwards to push for full access and this week NICE released new draft guidance.

Under the draft they state they have made changes to the MAA.

The previous criteria for the drug excluded those that used to be able to walk independently but now no longer can. This has now been changed so that people under 18 who have lost the ability to walk in the last 12 months will be able to receive the treatment.

However anyone with the condition who cannot straighten their limbs will still not qualify. Suffers also only qualify if they are on less than 16 hours of non-invasive ventilation a day. This has not changed, to the disappointment of sufferers

NICE will now wait to see if the new draft will be appealed. If this is the case, then the entire process will start again, further delaying access to the drug.

Marni Smyth is among those devstated by the decision.

She said: “I have been waiting for a treatment my whole life.

“I could lose the ability to eat, even breathe independently. For type 1, they will not only potentially lose abilities, but they could lose their life.”

Last month the issue was bought up in Prime Ministers Questions, to which Theresa May said that “If NICE says Spinraza is available, then obviously it should stand by its word.”

The House of Commons appeared to be in agreement, with The Speaker John Bercow animatedly assuring the constituent’s MP that “If he wants it debated again before the summer recess it will be debated again, he can be quite sure of that.”

The Argus contacted NICE for a new statement.