The first adult patient to be treated at Salford Royal with a new drug for a debilitating spinal condition said she is excited that there is finally hope for the future.
Nusinersen is a drug that has been commonly used to treat spinal muscular atrophy (SMA) in children but had not previously been approved for use in adults with the same condition. Up until now, adults with SMA living in the North West of England had no effective treatment option available to them.
But, after approval by NHS England to use this medication in adults, Salford Royal has become one of only 11 centres in the country able to provide the treatment.
Jo McNicol, 44, was the first adult patient to receive the treatment at the Manchester Centre Clinical for Clinical Neurosciences at Salford Royal by lumbar puncture – a procedure during which a needle is inserted through the skin into the space between the bones of the lower spine.
Jo was born with SMA type 3, a condition which has left her with muscle weakness and fatigue which would only become progressively worse without treatment. She is able to walk but has used a wheelchair for any long distances for the past 10 years.
There is concern that over time she might lose the ability to walk altogether.
SMA affects the nerves in the spinal cord, making muscles weaker and causing problems with movement, breathing and swallowing. Jo said: “There hasn’t been any treatment for me up to now so I didn’t want to get too excited in case I couldn’t have Nusinersen.
“COVID obviously delayed the start of my treatment for a while but I am really excited to have finally started it and I now feel that there is hope.
“I am looking forward to having my second dose and hoping that I will get some energy back so I can exercise more. I will have to continue the treatment forever but I am hoping it will stop the progression of the condition so I can at least maintain the strength I have now.”
Up to 100 patients are set to receive the treatment at Salford Royal over the next 12 months.
Nusinersen, also called Spinraza and made by Biogen, is the first treatment that targets the underlying cause of spinal muscular atrophy (SMA). The treatment works by increasing the levels of a special protein produced by nerve cells in the spinal cord.
Phillip Kelly, Neuromuscular Specialist Nurse and Care Advisor, in the Muscle Diseases Unit at Salford Royal, said: “Despite being in the midst of a global pandemic, we have been working incredibly hard to develop this new service, which we hope will vastly improve quality of life for patients living with SMA.”
Dr James Lilleker, Honorary Consultant Neurologist at the Muscle Diseases Unit at Salford Royal, said the launch of the service was an important step forward for patients being able to access disease modifying treatments.
He added: “This is the first time this treatment has been available to adults living with SMA in the North West and represents an important milestone in the expansion and development of the Muscle Diseases Unit as we seek to improve the lives of people living with muscle wasting conditions.”