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MND Drug Access Fight: campaigner demands 'health equality'
18 Feb
Summary
- Campaigner seeks wider access to Tofersen, a drug slowing MND.
- The drug costs £8,000 per patient and targets SOD1 gene variation.
- NICE is evaluating Tofersen for routine NHS funding, decision pending.
Richard Brailsford, who lost his father to Motor Neurone Disease (MND), is advocating for broader access to Tofersen, a treatment that can slow the condition's advancement. This drug specifically benefits patients with the SOD1 gene variation, a group representing about 2% of those with MND.
The campaigner emphasized the treatment's £8,000 per-patient cost, framing it as a vital intervention that significantly improves patient outcomes. He is urging for "health equality" to ensure more individuals can benefit from this potentially life-altering therapy.
Tofersen is currently accessible in England through an early access program. The National Institute for Health and Care Excellence (NICE) is undertaking an evaluation to determine its suitability for routine NHS funding, with submissions anticipated in early June. The Department of Health and Social Care affirmed its commitment to enhancing MND care and support.
Brailsford's 14-year campaign was ignited by his father's nine-month struggle with MND, a period marked by daily symptom deterioration. He described the profound helplessness he felt, which motivated him to seek treatments and ultimately campaign for change, aiming to improve the future for others affected by MND.
