Fight to access ‘life-changing’ MS treatment
New Zealanders with multiple sclerosis (MS) say their only hope of slowing the disease is not available here and costs thousands of dollars.
In 2021, Anne Besley, a former operating theatre nurse with MS, and her mum Joan Perry started a petition to the Government to make stemcell treatment available in Aotearoa for people with MS.
Besley, from Auckland, had hematopoietic stem cell transplantation (HSCT) in India at the beginning of 2020. She said it ‘‘changed her life’’.
Celia Attwood, 32, from Wellsford, North Auckland, also said HSCT changed her life. She had treatment in Russia in 2018, at a cost of about $100,000.
She was diagnosed with MS at 28, but said looking back, she had symptoms years earlier.
‘‘In 2017 I got a tingling sensation in my limbs and knew something wasn’t right. I went to my doctor and was referred to a neurologist, and in early 2018 they told me I had MS.
‘‘I didn’t know much about MS then. I began researching and read about a girl who went to America for HSCT, and I decided I wanted it.’’
Attwood said the treatment gave her hope.
‘‘Since having the treatment all my MRIs have been clear, and I haven’t had any symptoms.’’
Emma Brooks lives south of Auckland. She also has MS, but hasn’t been able to have HSCT due to the cost.
Now 33, she found out she had MS when she was 20 and working in the Arabian Gulf for the navy.
‘‘I’ve been on a number of different medications and had issues with most of them. Last year my symptoms returned, and I was told HSCT could be a last resort.’’
But to have the treatment Brooks, who was medically discharged from the navy, said she would have to ‘‘halt her whole life’’ for at least a month and spend more than $60,000.
‘‘When I was told about the price my hope slipped away.’’
Multiple Sclerosis New Zealand said it needed to reach 10,000 signatures on the petition before the end of May.