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Fresh Hope For Life-Changing Drug For Cheshire Girl After Court Of Appeal Rules Decision Not To Grant Access To Spinraza Must Be Reconsidered

The family of a Cheshire girl living with a rare debilitating condition have fresh hope that she will now receive the treatment she needs after the Court of Appeal handed down a judgment ruling that she should be reconsidered for a life-changing drug.

Fifi Basma, 10, has Type III Spinal Muscular Atrophy (SMA) which has left her with muscle weakness and progressive issues with her mobility.

While there is currently no cure for SMA, in 2019 the National Institute for Health and Care Excellence (NICE) approved the drug Spinraza for use on the NHS in England, with patients like Fifi required to demonstrate their ability to walk at least five steps unaided prior to receiving the treatment.

Fifi had been documented in a one off assessment as walking four steps unaided and doctors at Manchester University Hospital NHS Foundation Trust and Great Ormond Street Hospital NHS Foundation Trust therefore declined to refer her for the drug. 

The family, from Wilmslow, appealed but it was rejected. Fifi’s mother, Sara, instructed specialist public law and human rights lawyers at Irwin Mitchell to launch judicial review proceedings to challenge the decision.  A High Court hearing followed in October 2020, where the Judge upheld the decision not to provide the drug for Fifi.

As a result, Fifi’s legal team applied to the Court of Appeal in a bid to overturn this judgment.  An appeal hearing took place on 11 February, and today the court ruled that the NHS Trusts must reconsider their decision taking into account all of the evidence.  The judgment was given by Lady Justice King and agreed by both Lord Justice Baker and Lady Justice Elisabeth Laing.

Katy Clarke, the public law and human rights expert at Irwin Mitchell representing Fifi and her family, said: “Today’s judgment is a huge step forward for Fifi and her family.  After being refused access to Spinraza, they were devastated as they strongly believe that Fifi’s quality of life could be greatly improved by this treatment.

“The family had provided other evidence of Fifi’s ability to walk five steps so they found it unfair that the decision to grant access to the drug appeared to have been based entirely on a one-off assessment where Fifi only walked four steps, especially as it is acknowledged that patients with SMA do have “off” days.

“Whilst they would have preferred not to have been in this position, the family felt they were left with no other option than to bring a legal challenge.  The fact that the decision will now be reconsidered, taking into account all the evidence they have provided, is a massive boost to them and gives them hope that a decision will now be made that Fifi can finally access this treatment. We would like to thank the court for hearing their case and handing down today’s judgment.

“This case is one example of the benefit of judicial review for people such as Fifi and her family whose lives have been impacted by decisions made by public bodies. 

“It also highlights the importance of individuals being able to access legal aid to obtain advice about their rights and to enable them to bring judicial review proceedings if necessary to challenge decisions made."

Fifi was diagnosed with SMA aged three.  She can no longer walk unaided as her condition deteriorates.

Fifi’s mum Sara said: “We are so happy with today’s judgment and very grateful that the court has ruled the decision not to grant Fifi access to Spinraza must be reconsidered.

“Fifi is such a brave girl and we are all so proud of how she gets on with life and stays so positive despite her deteriorating condition.

“At the very least, this treatment could potentially help Fifi with the mobility and strength in her upper body, and at the best she may even be able to walk again.  It would make such a difference to her life.

“When she was rejected for treatment, we were heartbroken but had to keep fighting for her.  We knew she could walk five steps and so should be able to access this treatment.  Now the court has heard our plea we can’t thank them enough for allowing the appeal. 

“We really hope that in light of the court’s judgment the doctors will now do the right thing and provide Fifi with the treatment she so deserves and stop her from deteriorating any further.”