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Prime minister refuses request to intervene and help sick Forest Gate baby

PUBLISHED: 13:30 13 March 2019 | UPDATED: 13:30 13 March 2019

Maryam with her father Shakil. Pic: Shakil/Abdullah Aid

Maryam with her father Shakil. Pic: Shakil/Abdullah Aid

Archant

The prime minister has refused to intervene to help a baby who could have just months to live without a wonder drug.

Lyn Brown, MP for West Ham, asked Theresa May directly during prime minister’s questions today (Wednesday) to intervene and help six-month-old Maryam Malji.

The tot has the rare genetic condition, type one spinal muscular atrophy type 1 (SMA1) and a drug called Spinraza could save her life.

Her parents Zainab and Shakil, who live in Forest Gate, are awaiting a decision from NHS approval body the National Institute for Health and Care Excellence (NICE) as to whether Maryam can be given the drug.

Her brother Abdullah, who also had SMA1, was part of a Spinraza trial that proved successful and led to the drug being government-funded across Europe - but not in England, where NICE had said it would not be recommending it due to the price. Abdullah died aged one in December 2015 from an infection.

Addressing Ms May directly in the House of Commons, Ms Brown said: “As I told the prime minister a month ago, my constituent Maryam was diagnosed with SMA1 in November of last year when she was just four months old.

“She needs Spinraza now and is likely only to live a few months without it.”

She added: “Last time the prime minister told me to see a minister, I did and nothing’s changed.

“All I’m asking is for baby Maryam to have the same chance of Spinraza as she would if she lived in Scotland, Germany, Italy, Romania or 20 other European countries.

“Let me be clear. I’m asking the prime minister to intervene. Will she?”

Ms May, speaking with a hoarse voice, expressed her sympathies to Maryam’s family but said: “Decisions of this matter are rightly taken not by politicians but by clinicians.

“It is right that the benefits and the evidence in relation to new medicines are properly considered by the experts in the field, by the clinicians. The department for health and social care is working with NICE on this issue.”

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