Patients with the incurable disease multiple sclerosis (MS) are calling for faster access to a pioneering treatment that has been approved for use on the Welsh NHS.
Health Technology Wales, which issues guidance on the latest medical procedures and treatments, claims stem cell therapy has the potential to give some MS patients a better quality of life than if they receive current “disease-modifying” drugs (DMTs).
The treatment, known as autologous haematopoietic stem cell transplantation (AHSCT), uses chemotherapy to remove the immune cells that attack the brain and spinal cord in MS patients. The immune system is then “rebooted” using the patient’s own stem cells which have been previously harvested.
Evidence shows that this one-off procedure, normally associated with cancer patients, can halt the progression of MS – and is also cheaper than DMTs which have a high ongoing cost.
The Welsh body responsible for commissioning specialist health services has announced that it is now formally supporting the funding of the therapy within NHS Wales.
Public relations manager and keen marathon runner Hannah Webster, 41, from Manorbier, Pembrokeshire, was diagnosed with MS a year ago.
Her early symptoms have included temporary blindness in one eye and numbness on her left side. “I’d noticed my legs feeling like jelly after a run but I never in a million years thought I’d end up with an MS diagnosis,” she said.
“I have had to give up work and I’m worried that I will gradually get worse and end up in a wheelchair.”
Like most people in the early stages of MS, known as “relapsing-remitting”, Hannah is receiving drugs to try to slow the progression of the disease and relieve the symptoms.
She said she is excited about the new guidance but accepts she has to persist with a second course of drugs.
“I’m really torn because I want the drugs to work but on the other hand I want them to fail because from the research I have done the alternative – stem cell therapy – seems to be my best chance of getting free from this disease.
“The drugs I am on now may help for a few years but I could well end up worse at the end of it all.”
Latest figures show there are around 5,600 MS patients in Wales with 230 new cases being diagnosed each year.
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HTW’s guidance, issued last July, means the treatment is now available from NHS Wales. Its chairman, Professor Peter Groves, said: “We found that the clinical evidence supports the benefit of this treatment for selected patients as compared with conventional drugs and our detailed analysis of the costs involved shows that in these individuals this treatment is a very efficient use of healthcare resources.”
Until now people in Wales with MS seeking AHSCT have had to pay for it often going abroad. Now commissioners at the Welsh Health Specialised Services Committee (WHSCC) have agreed to support its funding within NHS Wales.
Andrew Champion, an assistant director at WHSCC, said: “We recognised the existing eligibility criteria and evidence base for this treatment was unclear and out of date so we asked HTW for guidance.
“The technology appraisal that HTW undertook enabled WHSCC to come to a much better informed decision on commissioning the treatment. In the future, as a result, we expect more patients to access this highly clinically and cost-effective treatment option, thus improving their survival and quality of life.”
Retired primary school teacher Catherine Bourne, from Llangollen, said AHSCT was a life-changer for her. She was diagnosed with MS two years ago at the age of 53.
“I went downhill fast,” she said. “I went from being an active person, I loved cycling, to someone with a Zimmer frame. And I was faced with a wait of nine months for a consultation with a neurologist.”
Having researched AHSCT online she and her husband decided to cash in a pension policy to pay £40,000 for treatment at a clinic in Mexico.
“AHSCT groups online were so positive, I had to do it,” she said. The treatment in Mexico was very demanding and she flew home exhausted but after a long recovery period she said she is experiencing significant improvements.
“I can walk up three-storey buildings unaided, I’m eating better, and I have no bowel problems. AHSCT has given me my life back.”
Moranda Matthews, 40 a chartered engineer living in Swansea, said she is desperate for AHSCT.
Still at the relapsing-remitting stage, she is considering paying for the stem-cell transplantation offered by a clinic in Moscow, although she would prefer to be treated in Wales.
“I am being offered disease-modifying drugs which could last a lifetime but I am going to end up disabled,” she said.
“MS is impacting my life each and every day. It’s difficult to remain positive when this treatment seems so far out of my reach unless I pay for it in England or abroad.
“My preference is to have AHSCT now while I am still fit and young. It’s a one -off treatment and I can get on with my life.”
Mindy Watt, who manages a UK-wide HSCT support group, welcomes the HTW guidance but is calling for greater awareness of it among Welsh medical professionals.
She believes there are hundreds of MS patients in Wales – not just at the relapsing-remitting stage – who could eventually benefit from AHSCT.
“MS patients in Wales have been fighting for this and now we need to make the neurologists aware of the new advice,” she said.