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Drugs company urged to 'do the decent thing' and help Forest Gate baby facing a death sentence

PUBLISHED: 10:00 01 February 2019 | UPDATED: 10:30 01 February 2019

Maryam Malji has type 1 spinal muscular atrophy and may just have months to live. Pic:  Pic: Shakil/Abdullah Aid

Maryam Malji has type 1 spinal muscular atrophy and may just have months to live. Pic: Pic: Shakil/Abdullah Aid

Archant

The MP for West Ham has urged a pharmaceutical company to 'do the decent thing' for a baby facing a death sentence unless she receives a potentially life-saving drug.

Lyn Brown is the MP for West Ham. Pic: Lyn BrownLyn Brown is the MP for West Ham. Pic: Lyn Brown

Lyn Brown spoke out in parliament this week about the heartache a family from Forest Gate face unless their five-month-old daughter is given Spinraza.

Maryam Malji suffers from a rare genetic condition, type 1 spinal muscular atrophy (SMA), which affects her walking, eating, drinking and breathing.

Medics have told her parents Zainab and Shakil she could have just months to live without Spinraza.

Despite the drug being free in Scotland and 23 other European countries, the NHS approval body NICE said it was not recommending it due to its price.

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

It costs £75,000 per dose and is administered by four injections into the cerebral spinal fluid, followed by a top-up injection every four months.

In a cruel twist, Maryam’s brother Abdullah also had SMA1 and was one of the first children to receive Spinraza when he was placed on a medical trial.

He died aged one in December 2015, from an infection, but the trial was successful and led to the drug being government-funded across Europe.

Ms Brown told the House of Commons that Maryam’s parents Zainab and Shakil felt used as the drug was trialled on Abulladah but is being denied to his sister and Biogen, the company that makes the drug, was using ‘heartless’ tactics.

She said: “Biogen are offering to work with NICE towards what they call a ‘bridging solution’ if and when NICE commit to a permanent agreement to pay for SMA patients to access Spinraza.

“Shakil and I have been encouraged by Biogen to campaign for this as the weeks pass and Maryam inevitably gets weaker and weaker.

“I call these tactics heartless. Effectively their approach has been to hold a baby’s life in their hands and ask a still grieving family to use their child to get the deal they want with NICE.

“I’m not going to let the government and NICE off the hook on this one, and I’d like to meet with the department.

“But Biogen needs to step up now and offer a way forwards for Maryam.

“She can’t wait.

“Biogen – so the decent thing.”

Mr Malji has set up a petition for calling for the government to give Spinraza to all SMA sufferers.

So far it has attracted 220,000 signatures.

To add your name click here.

Meindert Boysen, director of the centre for health technology evaluation at NICE, said talks between NHS England and Biogen were ongoing.

“The committee was willing to be flexible because of the nature of the condition, but the very high cost meant it could not recommend the drug,” he added.

A Biogen spokesman said: “Biogen cannot comment on individual cases but can confirm it has responded directly to the family concerned, and has also been in contact with Ms Brown’s office.

“Biogen is absolutely committed to playing our part in helping the NHS make Spinraza available to as many patients as possible, as quickly as possible.

“Biogen have already raised the subject of a bridging solution with NHS England. This provides an option, once an agreement is imminent, for flexible payment terms while the final logistics of NHS reimbursement are being implemented.

“In addition, we have just submitted a new revised proposal, having gone to great lengths to remove price as a barrier and now are waiting for NICE and NHS England to conclude the process.”

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