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“He is finally able to live the life of a 9-year-old schoolboy” – How access to treatment changed Finley’s life

22 July 2022

Finlay outside front door, wearing Muscles Matter hoodie
Through our research into better drugs and treatments, and our involvement in the NICE and the SMC appraisal process, we have been able to help individuals living with muscle-wasting conditions access better treatments and improve their quality of life.

As we reflect on the fantastic progress we are making in this field, we hear from Rosie, who tells us about her son Finley’s experience with spinal muscular atrophy (SMA) and the life-changing impact access to better treatments has had for him. 

Finley is 9-years-old and lives with SMA. Recently, he has been able to access two different, new treatments, Spinraza and Risdiplam, for his condition. These treatments have been made available by MDUK, in partnership with SMA UK, through securing access via a Managed Access Agreement. 

At first Finley tried the Spinraza and it gave him much more strength than he had previously. However, Rosie noticed that the experience was taking a toll on his mental wellbeing. “Finley significantly struggled with the psychological impact of having to receive lumbar punctures every four months; he clearly dreaded the dates of upcoming appointments,” she said. 

So, a few months back, they made the decision to change to an alternative treatment called Risdiplam. This medicine is taken orally, administered daily through Finley’s feeding tube, making it a much less invasive experience for Finley.  

“Finley is delighted he doesn’t have to experience any more pain with treatment and it also means less time in hospital, which is always welcomed!” said Rosie.  

Risdiplam has massively helped Finley maintain his strength and energy, and since starting treatments he has not had any emergency respiratory admissions. Having access to try new treatments has complete changed Finley’s life; “he is finally able to live the life of a 9-year-old schoolboy and we are able to live without so much sadness and worry.” 

MDUK assisted in the NICE approval processes of both Risdiplam and Spinraza within our work to accelerate the progress of new treatments available to people living with muscle-wasting conditions. This campaign works across ten treatments for a range of muscle wasting conditions and has seen exciting progress in the last few years.  

It is important to ensure that people have access to these life-changing treatments as soon as possible, so this campaign is central to making every day count towards beating muscle-wasting conditions.  

Rosie said: “It’s incredible to think that there are a range of treatments available for Spinal Muscular Atrophy when there was nothing at all for years.”  

Through accessing these new treatments, Finley has been able to maintain amazing levels of strength and energy. This has meant that he has been able to get a new wheelchair that they thought might not have been possible due to his previously decreasing strength and energy.  

“Recently, we’ve also got him a new powered wheelchair, that supersedes the chair he has had since he was three. He is really excited about having a new, faster, more efficient chair, and this would not have been possible without his strength and energy levels that have been maintained by the treatment he has been able to access.  Our excitement is at fever pitch!” 

Read more about the 10 treatments we have helped improve access to here

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