A father who was diagnosed with motor neurone disease (MND) has had his hopes of participating in a life-extending drug trial crushed. Mark Sommerville received the devastating news of his MND diagnosis in October last year and was given just 18 months to live. In July, the 43-year-old father of four signed up for a drug trial involving Proleukin, a treatment not covered by the NHS, at a cost of £530 per month. However, his plans were shattered when he had to withdraw from the trial due to his concurrent diagnosis of Crohn’s disease, leaving him feeling like he was facing a “death sentence”.
Mark, from Uddingston, Lanarkshire, has now made an appeal to the Scottish Government to increase funding for MND research and care for those affected by the disease. He expressed his disappointment, stating, “I was going to pay £530 a month for the rest of my life because there isn’t a cure and the drug isn’t available on the NHS. The Scottish Government needs to put more money into research and finding a cure. People who have MND can’t wait, they need help now.”
Despite his circumstances, Mark remained determined and resilient. He founded The Mark Sommerville Foundation after his diagnosis, which aims to support MND patients and their families. The foundation has raised over £11,000 to assist those affected by the condition. Last month, Mark married his partner of 22 years, Erika, in a touching ceremony surrounded by loved ones, including their children Rebecca, Ellie, Olivia, and Cole.
MND Scotland reports that one in 300 people in the UK will develop MND in their lifetime, with no current cure or effective disease-modifying treatment available. In Scotland alone, there are 400 individuals living with MND. The disease is fatal, causing muscle weakness and wasting, leading to the loss of abilities like walking, talking, eating, and breathing independently.
Mark had opted to privately fund Proleukin, an immunotherapy drug that showed promising results in slowing disease progression in some cases. Dr. Jane Haley MBE, Director of Research for MND Scotland, highlighted the organization’s commitment to the MND-SMART clinical trial since 2018, providing opportunities for individuals with MND across the UK to participate in trials. The Scottish Government has allocated £482,000 to MND research, with Public Health Minister Jenni Minto stating, “We are co-funding, with MND Scotland, a three-year clinical academic fellowship to help progress the search for an effective treatment.”
Mark’s story sheds light on the challenges faced by MND patients and underscores the importance of continued research and support for those battling the disease. His determination to fight back and support others in similar situations serves as an inspiration to many, highlighting the resilience and strength of individuals facing life-altering conditions.