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Mum Fights for Son's Life-Saving Drug
21 Sep
Summary
- A mother campaigns for NHS access to Omaveloxolone for her son's rare disease.
- The drug Omaveloxolone significantly slows the progression of Friedreich's Ataxia.
- A petition demanding NHS funding has gathered over 100,000 signatures.
Sarah Officer is actively campaigning for the National Health Service (NHS) to fund access to the drug Omaveloxolone for her son Jake, who suffers from Friedreich's Ataxia. This rare inherited disorder causes progressive damage to the nervous system, significantly impacting muscle coordination.
Omaveloxolone has demonstrated an ability to slow the progression of Friedreich's Ataxia by as much as 55 percent. While the drug received approval from the MHRA in April 2025, its availability on the NHS has been stalled. Manufacturer Biogen withdrew its submission to NICE last year, leaving patients in limbo.
Officer, whose son Jake was diagnosed in September 2017 at age nine, describes the lengthy approval process as agonizing. She states that Jake, now 18, is "not the kid he used to be," highlighting the drug's potential as a crucial "gamechanger" for his quality of life and mental health.
A petition launched in March by Sarah and other parents has garnered over 100,000 signatures, prompting a parliamentary debate. Currently, there is no cure or specific treatment for Friedreich's Ataxia in the UK, with available therapies like physiotherapy and hydrotherapy facing long waiting lists and limited availability.
NICE has stated they cannot make a recommendation without Biogen's evidence submission and are ready to reopen the appraisal if the company decides to resubmit.
