A new multiple sclerosis medical trial could pave the way for ground-breaking stem cell treatment in Scottish clinics.
The StarMS trial will test whether stem cell treatment is more effective than traditional drugs, potentially opening the door to it becoming an early port of call for newly diagnosed patients.
The trial, involving patients in Glasgow and Edinburgh, brings new hope for Scottish patients who say they have been left behind in accessing stem cell transplants, despite Scotland having one of the worst rates of MS cases in the world.
Haematopoietic Stem Cell Transplantation (HSCT) uses aggressive chemotherapy to wipe away the immune system and replenish it with stem cells harvested from patient’s own bone marrow.
It is said to ‘reboot’ the immune system, halting MS in its tracks.
NHS Scotland approved its use in 2019 for certain patients, and said it would fund their treatment in England, where it has been available for several years.
So far, however, not a single Scottish patient has been given the go-ahead.
Instead, MS patients say they are being offered different treatments or told they do not meet the tight criteria.
It’s raised concerns that vital time when the condition could be halted is lost, putting patients at risk of irreparable disabilities and a lifetime of medication.
The issue is said to be fuelling a steady stream of MS patients turning to private clinics in Russia and Mexico, where treatment costs around £50,000. The costs are significantly less than private treatment at clinics in England, where it costs around £90,000.
Some have raided savings and inheritance money, while others are desperately selling homemade cakes and jam, and crowdfunding in a desperate bid to raise money for their treatment.
One, Lynda Hogg, 58, from Dunfermline who was diagnosed with primary progressive multiple sclerosis seven years ago, is currently in Russia having sold her home to pay for treatment.
Alison Coates, founder of the Auto Immune and Multiple Sclerosis (AIMS) charity described the situation as “dreadful” and claimed some MS patients are so scared of ending up severely disabled that they’ve “booked a plane ticket to Dignitas”.
She said: “The number of people in the UK who have been able to access this treatment is very small: only 0.2% of the MS population in the UK has been able to access this here, including private and NHS patients.
“Most – if not all – have been English patients.
“Even though the rules are there, and everything is in place to supposedly put Scottish MS patients through to have the treatment in England, that hasn’t happened yet.
“If anything, a lot of practitioners are making it extremely difficult for their patients.
“I know people who have booked a plane ticket to Dignitas because they are not able to live their lives.
“There are really high numbers of MS patients in Scotland. You’d think the country would be ahead of the game and pioneering in this, but it’s not the case.”
More than 15,000 Scots have multiple sclerosis, and the country has some of the highest rates in the world. MS affects around 209 per 100,000 of the population, compared with 164 per 100,000 in England.
That rises to 229 in Aberdeen and 402 per 100,000 on Orkney, leading to theories that the condition may have links to a lack of sunlight.
There is no cure, but disease modifying drugs can help stem the progress of the condition.
Stem cell transplantation is considered most effective for the 85% of patients who have relapsing remitting MS, with claims it can halt the condition before they develop disabilities.
However, patients with primary and secondary progressive MS, who already suffered nerve damage due to the condition, are also said to have benefited.
They include Jill McLaren, from Edinburgh, and Michele Murray, from Tain, who both have secondary progressive MS and travelled to Russia in October 2020 for the treatment.
Both say the procedure has had remarkable impact, putting their MS into remission, and cutting down and even eliminating medication.
Michele, who was diagnosed 18 years ago, suffered fatigue, muscle spasms, weakness in her legs and arms and balance problems. She raised £42,000 through crowdfunding, sponsored events and fundraising dances.
“It’s the best thing I’ve ever done. It was tough at the time, but afterwards you feel you are getting your life back,” she said.
“From day one when I was diagnosed with MS, I was started on injections. Now I don’t need injections at all.”
Jill, from Edinburgh, who was diagnosed around the same time, spent family savings on the treatment at The National Pirogov Medical Centre.
She added: “As far as I’m concerned, it has worked. It has reset my immune system and it has no memory of the MS part.
“I’m not on many MS drugs now, and I’m probably saving the NHS thousands of pounds a year.
“I now don’t have this overwhelming sense of doom that things are going to get worse, that I’ll have a big relapse and end up in a wheelchair.”
The treatment has been given to more than 250 patients at clinics in London and Sheffield for around six years, with some regaining their ability to walk, run and even dance as a result.
The new UK-wide trial will see 198 patients from 19 locations across the UK including NHS Greater Glasgow and NHS Lothian selected randomly for either stem cell treatment or one of two MS drugs.
It’s hoped it will confirm the treatment’s efficacy and safety, however, the findings will be at least two years away.
Glen Dickson, 34, of Bonnyrigg, diagnosed seven years ago with relapsing and remitting MS, says his condition has already deteriorated while he has waited to find out if he can receive NHS-funded treatment in England.
He has now launched a crowdfund appeal for treatment in Russia.
“I have been speaking to neurologists for about five years about this treatment and getting nowhere. There are so many hoops to jump through,” he said.
“It’s very frustrating. I’m not sure how long I will be mobile for, but when I speak to doctors, I’m told I should wait another six months and see what happens.
“For me, it’s a matter of urgency, because in six months I could have another big relapse.”
Morna Simpkins, Director of MS Society Scotland, said: “Having sites in Scotland participating in the StarMS trial is a positive, and potentially the first step towards developing an HSCT service within Scotland.
“NHS eligibility criteria are strict at the moment and availability is limited, but people with MS who live in Scotland can be referred to sites in England that currently offer HSCT.
“However, this is a recent development and we know that it isn’t yet happening routinely.
“We want everyone who is eligible to get HSCT on the NHS as it’s vital that people with MS have a range of treatment options available and can make a decision based on what’s right for them.”
A Scottish Government spokesperson said: “We understand how distressing and debilitating MS can be, and we want to ensure that people can access the best possible treatment and support.
“HSCT can be offered to patients from Scotland when it is clinically judged that the benefits of treatment outweigh the risks. In these circumstances the NHS in Scotland will fund the treatment to be undertaken at a specialist centre in England.”
They added treatment decisions are a matter for clinicians in consultations with their patients.
“NHS National Services Scotland National Services Division and the clinical neurology and stem cell transplant teams in Scotland are working together on planning the development of HSCT services and pathway for eligible MS patients in Scotland.”