Norfolk man who had multiple sclerosis stem cell therapy welcomes international trial results
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It’s almost a year since Jonathan Hamilton had pioneering stem cell therapy to try and halt - and perhaps even reverse - the devastating effects of multiple sclerosis.
The former soldier shared his story and hopes for the future with readers last October in a bid to make others aware of the little-known experimental treatment for this debilitating condition, where the body’s own immune system attacks its tissues, damaging nerves in the brain and spinal cord.
So he was fascinated to hear last week about the results of an international trial which appeared to confirm what doctors had previously suspected - stem cell treatment like Jonathan had could be a “game changer” for many patients, with the ability to stop the disease and improve symptoms.
“I knew there were various trials going on so this news has been really interesting,” says Jonathan. “It’s really heartening to hear how much good it has already done for so many people.”
Just over 100 patients took part in the international trial, in hospitals in Sheffield, Chicago, Sweden and Brazil. They all had relapsing remitting MS - where attacks or relapses are followed by periods of remission - and received either drug treatment or haematopoietic stem cell transplantation (HSCT), which involves wiping out the existing immune system using cancer drugs and then rebooting it with a stem cell transplant from the patient’s own blood and bone marrow.
The interim trial results were released at the annual meeting of the European Society for Bone and Marrow Transplantation in Lisbon and showed that after one year only one relapse occurred among the stem cell group compared with 39 in the drug group. After an average follow-up of three years, the transplants had failed in three out of 52 patients (6%), compared with 30 of 50 (60%) in the control group. Those in the transplant group experienced a reduction in disability, whereas symptoms worsened in the drug group.
Lead investigator Prof Richard Burt told the BBC: “The data is stunningly in favour of transplant against the best available drugs - the neurological community has been sceptical about this treatment, but these results will change that.”
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Jonathan, who lives in Hethersett with his wife and two young sons, was not part of that trial but had HSCT in May last year at Hammersmith Hospital in London.
By October, his fatigue had lessened, he felt more alert and mobile. But sadly, his eyesight, which was badly compromised by MS, affecting his ability to truly engage with his sons and read them story books, had not improved to the extent he had hoped.
Now, almost a year on, Jonathan says he is sure many of his symptoms have lessened even further, though he remains disappointed he hasn’t had the sight improvement he was hoping for. He’s also currently recovering from a broken back after falling down stairs earlier this year.
“I don’t see beautifully and that’s a clear blow as it makes me unemployable and unable to really read, which is upsetting,” he says. “It might have improved a touch but not so much that I can definitely notice a real change. But I can notice other real improvements, even in the last few months, in my mobility and tiredness and I feel much better in myself.
“I’ve got an appointment with my hospital consultant in June and will ask then about whether I could still have further improvements in the coming months as at the moment I just don’t know how long improvements continue after treatment. Whatever happens, I’m delighted that since having the treatment my symptoms haven’t got worse. For me, the results so far haven’t been perfect but I’m still glad I had HSCT.”
HSCT costs around £30,000, about the same as the annual price of some MS drugs.
Doctors stress it is not suitable for all MS patients and the process is gruelling, involving chemotherapy and a period of isolation in hospital.
However, Dr Susan Kohlhaas, director of research at the MS Society, said HSCT “will soon be recognised as an established treatment in England - and when that happens our priority will be making sure those who could benefit can actually get it”.
Jonathan’s blog about his treatment could be found at anythingmorewouldbegreedy.wordpress.com.
More about MS and HSCT
MS occurs when the immune system attacks fatty sheaths around nerves that relay messages between the brain and body. This can lead to lesions and damage in the nerves, causing problems with vision, movement, sensation or balance. More than 100,000 people in the UK have MS.
HSCT - autologous haematopoietic stem-cell transplant - is an intense chemotherapy treatment. It aims to stop the damage MS causes by wiping out then regrowing the immune system, using a patient’s own stem cells. Treatment begins with chemotherapy and injections to encourage stem cells to move from the bone marrow into the blood, from where they are removed and stored for later in the procedure. Chemotherapy is then given to wipe out the immune system. Finally, stem cells are transplanted back into the blood to help regrow the immune system.
HSCT is only available on the NHS for people who meet specific medical criteria. Patients need to have evidence of active inflammation (new lesions) for doctors to refer for NHS treatment. The MS Society says that as it’s an intense procedure with high risks, it’s not currently routinely considered.
According to a European register, one or two in every 100 people (1.3%) having HSCT have died as a result of the treatment.