Multiple sclerosis patients calling for faster access to a new treatment
PEOPLE with multiple sclerosis (MS), an incurable disease that can cause serious disability, are calling for faster access to a treatment that for some patients can produce significantly better outcomes. Health Technology Wales, which issues guidance on the latest medical procedures and treatments, says stem-cell therapy has the potential to give some MS patients a better quality of life than if they receive the current ‘disease modifying ’drugs . In such cases this therapy, called AHSCT, is also more cost-effective for the NHS. The Welsh body responsible for commissioning specialist health services has also just announced it is now formally supporting the funding of the therapy within NHS Wales.
Hannah Webster, 41, was diagnosed with MS a year ago. The news shocked the former public relations manager and keen marathon runner, now living in Manorbier, Pembrokeshire. “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.” Hannah’s early symptoms have included temporary blindness in one eye and numbness on her left side. “I have had to give up work and I’m worried that I will gradually get worse and end up in a wheelchair, “ she added.
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. The new guidance from Health Technology Wales (HTW) recommends that certain patients should now be considered for an alternative treatment called AHSCT (Autologous Haematopoietic Stem Cell Transplantation), provided they’ve been treated with disease-modifying therapies (DMTs) and still have recurring symptoms. The intensive procedure uses chemotherapy to remove the immune cells that in MS patients attack the brain and spinal cord. The immune system is then re-booted using the patient’s own stem cells which have been previously harvested. Evidence shows that this one-off procedure can halt progression of MS. As a one-off treatment, AHSCT is also cheaper than DMTs, which have a high ongoing cost. AHSCT is also more effective than DMTs.
Hannah 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”.
There are some 5,600 MS patients in Wales, with 230 new cases a year. HTW’s Guidance, issued last July, means the treatment is now available from NHS Wales. Health Technology Wales (HTW) is a national body working to improve the quality of care in 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.”
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.”
Mindy Watt, who manages a UK-wide HSCT support group, welcomes the HTW guidance, but she is calling for greater awareness of it amongst Welsh medical professionals. “MS patients in Wales have been fighting for this and now we need to make the neurologists aware of the new advice”. She believes there are hundreds of MS patients in Wales – not just at the relapsing-remitting stage- who could eventually benefit from AHSCT.
Retired primary school teacher Catherine Bourne, from Llangollen, says 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 says she is experiencing significant improvements. “I can walk up three-storey buildings unaided, I’m eating better and I have no bowel problems.” She says her MS disability score has moved from a high of 6.5 down to 2 over the last 9 months. “AHSCT has given me my life back.”
40-year-old Moranda Matthews, a chartered engineer living in Swansea, says 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. 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. 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.”
Health Technology Wales (HTW) makes evidence-based appraisals of the clinical and cost- effectiveness of non-medicine health technologies. Based on the appraisals, HTW issues guidance on how innovations should be adopted by NHS Wales. It is funded by Welsh Government and is independent, but works closely with Welsh health services. Professor Groves said:
“Our evidence assessment shows that both patients and the healthcare system will benefit from this important development. It also demonstrates the importance of collaboration between different elements of the healthcare system in Wales to ensure the best possible outcomes for patients.
“We are delighted that the Specialist Commissioners have supported the funding of a newly established AHSCT service. This will mean that the existing expertise of clinical teams can now be applied to ensuring that this treatment is available to patients in Wales.”
Since its establishment in 2017, HTW has collaborated with partners across health, social care and the technology sectors. Its remit covers any health innovation that isn’t a medicine, such as medical devices, surgical procedures, psychological therapies, tele-monitoring or rehabilitation. Welsh Government has just announced a significant increase in HTW’s funding for the coming financial year.
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