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Scottish government offer to provide life-saving drug to Forest Gate baby with rare genetic disorder

PUBLISHED: 16:32 17 April 2019 | UPDATED: 16:32 17 April 2019

Maryam Malj has type 1 spinal muscular atrophy. Pic: Rachael Burford

Maryam Malj has type 1 spinal muscular atrophy. Pic: Rachael Burford

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The government has been urged to act on a Scottish proposal offering a baby with a rare genetic disorder the ‘wonder drug’ she needs.

Maryam with her father Zainab. Pic: Rachael BurfordMaryam with her father Zainab. Pic: Rachael Burford

Health chiefs had refused to recommend the potentially life-saving drug Spinraza for Maryam Malji from Forest Gate because of its cost even though it has been available in Scotland since last May.

The eight-month-old has type one spinal muscular atrophy (SMA), which affects walking, eating, drinking and breathing.

Labour MP for Edinburgh South, Ian Murray, wrote to the Scottish government last month to ask if anything could be done for her.

Joe Fitzpatrick MSP, minister for public health, sport and wellbeing, replied on March 31 saying NHS Scotland would consider granting access to Maryam and all babies in England in need of Spinraza.

West Ham MP Lyn Brown. Picture: L BROWNWest Ham MP Lyn Brown. Picture: L BROWN

But the offer depended on the NHS in England agreeing to let Scottish people access medicines available here.

Mr Murray wrote to the health secretary, Matt Hancock, urging him to act, but Maryam's supporters, including West Ham MP Lyn Brown, have urged him to respond before it is too late.

Lyn Brown said: “This is yet another example of this government's attempts to avoid any responsibility for the decisions taken within our NHS on their watch.

“I hope the government will tell us they'll act on the offer soon.”

Health secretary Matt Hancock. Picture: PA / David MirzoeffHealth secretary Matt Hancock. Picture: PA / David Mirzoeff

The MP – who raised Maryam's plight in Parliament – added she expected a decision last week about whether the National Institute for Clinical Excellence (NICE) would approve funding.

“I am so angry that it wasn't and that Maryam's mum and dad remain desperate for a drug that 24 other European countries provide.

“What kind of country is it that behaves in this way?” Ms Brown asked.

A department of health spokesman said: “Spinal muscular atrophy is a terrible condition and we're committed to making sure all patients have access to the best medicines at a price the NHS can afford.

“NICE's robust, internationally respected, independent system balances the cost of medicines with their proven clinical benefits to ensure the NHS pays a fair price for the most innovative treatments.”

Maryam's brother Abdullah, who also had SMA1, received the drug when he was placed on a medical trial.

He died in 2015 but the trial succeeded and led to Spinraza being funded by governments in 24 European countries.

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