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Mum Fights for Life-Extending Drug Access
2 Sep
Summary
- Mum with Friedreich Ataxia fears running out of time.
- A drug for FA is approved elsewhere but not on NHS.
- She is fundraising for a £250,000 annual private treatment.
A UK mother of three, Becca Barnes, faces a critical race against time as she battles for access to a treatment that could extend her life with her children. Diagnosed with Friedreich Ataxia (FA), a rare genetic disorder that damages the nervous system, Barnes has seen firsthand the devastating effects of the condition, having lost two brothers to it. She is now approaching the average life expectancy for FA, which is in the mid-30s, and her symptoms are becoming more pronounced.
While a drug named Omaveloxolone has received regulatory approval in the US and parts of Europe for FA, it remains unavailable through the UK's National Health Service (NHS). The cost for private treatment is an staggering £250,000 per year. To access this potentially life-saving medication, Barnes has launched a fundraising campaign and is advocating for greater awareness and NHS provision of the drug.
Barnes expressed her deep desire to witness her children grow up, stating, "I'm just a mum with 3 children, I don't want anything special. I just want to be here. I want to watch them grow up and I want to be able to take them places, make memories with them and just be with them." Despite the challenges, she remains determined to manage her condition and live as fully as possible, refusing to let FA completely control her life.
