

Ensure continued NHS access to Spinraza and Risdiplam for SMA
The Issue
The National Institute of Health and Care Excellence (NICE) is currently evaluating the 'cost-effectiveness' of Spinraza and Risdiplam, crucial medications for those living with SMA. There's a daunting possibility these life-altering drugs could become inaccessible under the NHS. This is alarming because the annual cost of Spinraza alone is approximately £225,000, a sum far beyond the reach of most families.
Children and adults affected by SMA deserve every opportunity to live long, fulfilling lives, unhindered by financial barriers.
While Spinraza doesn't cure SMA, it plays an invaluable role in managing its effects. Ensuring these drugs remain available to those who need them is not just a medical necessity but a moral obligation.
Spinal Muscular Atrophy affects approximately 1 in 10,000 people in the UK. The availability of Spinraza and Risdiplam under the NHS should be prioritized to preserve the dignity and potential of these individuals. Keeping these treatments accessible underlines our commitment to uphold quality healthcare and offer hope to families affected by SMA.
We urge NICE and the government to ensure that these critical medications remain available for all patients who can benefit from them. Please join us in this vital cause and sign the petition to secure the future of countless lives affected by SMA.
5,131
The Issue
The National Institute of Health and Care Excellence (NICE) is currently evaluating the 'cost-effectiveness' of Spinraza and Risdiplam, crucial medications for those living with SMA. There's a daunting possibility these life-altering drugs could become inaccessible under the NHS. This is alarming because the annual cost of Spinraza alone is approximately £225,000, a sum far beyond the reach of most families.
Children and adults affected by SMA deserve every opportunity to live long, fulfilling lives, unhindered by financial barriers.
While Spinraza doesn't cure SMA, it plays an invaluable role in managing its effects. Ensuring these drugs remain available to those who need them is not just a medical necessity but a moral obligation.
Spinal Muscular Atrophy affects approximately 1 in 10,000 people in the UK. The availability of Spinraza and Risdiplam under the NHS should be prioritized to preserve the dignity and potential of these individuals. Keeping these treatments accessible underlines our commitment to uphold quality healthcare and offer hope to families affected by SMA.
We urge NICE and the government to ensure that these critical medications remain available for all patients who can benefit from them. Please join us in this vital cause and sign the petition to secure the future of countless lives affected by SMA.
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Petition created on 23 October 2025