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Race Against Time: Rare MND Drug Access Critically Delayed
28 Aug
Summary
- Marc Powell faces a potential death within a year due to delayed treatment.
- A drug for rare SOD1 variant MND shows unprecedented disease slowing.
- NHS funding decisions for Tofersen will not be made until March 2027 at the earliest.
A man diagnosed with a rare variant of Motor Neurone Disease (MND) is in a race against time for a life-extending treatment. Marc Powell, who has the SOD1 form of MND, has been told he could die within a year if he cannot access Tofersen, a drug showing significant promise in halting the disease's progression.
The drug manufacturer, Biogen, is supplying Tofersen free of charge to specialist centers. However, the NHS is still deciding on whether to fund it, with a decision from the National Institute for Health and Care Excellence (NICE) not expected until March 2027 at the earliest.
Specialist centers, including Salford Royal where Marc receives care, are limited in the number of patients they can treat due to the costs associated with administering the drug. This means Marc is on a waiting list, facing an indefinite delay as his condition continues to worsen.
Marc's wife, Julie, expressed the frustration and heartbreak of watching his decline. She highlighted that while the treatment is available and deemed safe, the bureaucratic delays mean patients like Marc might not live long enough to benefit. The family is hopeful that another center might have an available spot, offering a chance for Marc to see his children grow up.
