Rugby woman with MND takes drug fight to Parliament
The MND Association said more than 30 patients were currently taking Tofersen through an Early Access Programme, offered free by its developer Biogen.However, the charity said about 12 patients, including Ms McGirk, could not receive the drug because there was no local service able to administer it via the monthly lumbar puncture required.
'Everything a challenge'
MND causes muscle weakness that can deteriorate quickly. The condition is usually life shortening and there is no cure. Ms McGuirk, 57, was diagnosed with MND in 2023 and said "everything is a challenge", from making a cup of tea to getting changed. The retired teacher added: "The minute I found out there's something that can help me, it gave me hope. "You hold on to that and fight as long as you can. I just hope that this campaign will reach its objective and I will have a little bit more time with some independence."I try to keep the negative thoughts away from my mind, stay hopeful, and carry on fighting."Richard Evans, Director of Engagement at the MND Association, said: "This drug, which is being given for free, can be the difference between life and death for people with SOD1 MND."It is self-evidently unfair that the NHS is giving it to some people who would benefit from it, and not to others. We are talking about a small amount of resource that could literally be the difference between life and death."In response, a spokesperson for the Department of Health and Social Care said its thoughts were with all those living with the debilitating condition."The Medicines and Healthcare products Regulatory Agency (MHRA) is currently reviewing this treatment rapidly for quality, safety, and efficacy, for use in the United Kingdom."
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