Wolverhampton mum calls for decision on use of Spinraza

Heidi Prescott-Booth has been told she will need surgery for a curvature of the spine, caused by spinal muscular atrophy

The mother of an 11-year-old girl with a muscle-wasting disease is calling for health chiefs to speed up decision-making over a drug that could slow the condition.

Heidi Prescott-Booth was diagnosed with spinal muscular atrophy (SMA) at three.

Her family wants the drug Spinraza to be approved to treat people on the NHS.

A further meeting will be held by health bosses to discuss it next week, but her mother Katie Prescott said the family does not understand the delay.

The National Institute for Health and Care Excellence (NICE) said, following an independent committee meeting in March, it had asked NHS England and the drug's maker, Biogen, to discuss whether an access arrangement could be agreed which met its "framework for determining cost effectiveness".

NICE said no consensus had been reached but its appraisal committee would meet again in private on Wednesday in case an agreement was reached and, if not, to consider the consequences for developing guidance.

It previously refused to recommend Spinraza because of uncertainties over its long-term effectiveness and high cost.

Katie Prescott has said it would be "amazing" if the drug could halt the deterioration of Heidi's condition

But families of those with SMA, which makes muscles weaker and causes problems with movement, said the drug, which is approved for use in Scotland, could be life-changing.

For Heidi, SMA means she struggles to walk and, since the last committee meeting in March, has been told she will need surgery on a spinal curve.

"We have no more time to waste," said Mrs Prescott, from Wolverhampton.

"It is frustrating. Other countries - even Scotland - can do it and come to an agreement.

"I don't know what the delay is here and why, time after time, they can't make a decision."

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