Just one day before WHO declared COVID-19 a global pandemic in March, Brisbane dad Michael Jones landed in Moscow for treatment he hoped would halt his Multiple Sclerosis.
“In Queensland particularly [COVID-19] wasn't that severe. We were at about 20 cases when I made the call to jump.”
The treatment Michael travelled overseas for has been very successful in clinical trials, especially for young patients with relapsing remitting MS – but isn’t widely available anywhere in the world.
But at Moscow’s AA Maximov hospital, one doctor has been opening his doors to patients from around the world.
Dr Denis Fedorenko is a Russian haematologist who’s revered by the thousands of MS sufferers he’s treated.
“All patients understand that this is not 100% successful treatment. They know statistic and unfortunately sometimes disease comes back, but we try to do the best.”
Around a thousand foreign patients have received stem cell transplants in Moscow – each paying around AU$80,000.
More than 200 of them come from Australia – often after months of online fundraising. The treatment leaves them with a severely compromised immune system and a long road to recovery ahead of them.
Straight out of treatment and finding himself stuck in Moscow with almost no immunity, Michael had to figure out a way to get home.
An experimental treatment
MS is an auto-immune disease, which means you immune system doesn’t just defend you from infections – it attacks healthy cells.
No one knows why it happens, but it causes nerve damage that distorts messages from the brain to the rest of the body, sometimes leading to severe disability.
There’s no known cure, but autologous hematopoietic stem cell transplantation (AHSCT) is very effective at halting the progress of MS in some patients.
Chemotherapy wipes out the overactive immune cells seen in MS, before some of the patient’s own blood-forming stem cells, extracted from bone marrow before treatment, are reinfused. These cells reset the immune system so that it no longer attacks the central nervous system.
In Australia, clinical trials of AHSCT have been very promising, but only accept people who’ve failed to respond to multiple drug treatments.
Even in Russia, there’s resistance to stem cell transplants as a first-line of treatment for MS patients - it’s only available free to a handful of Russians enrolled in clinical trials.
Racing Home in the time of COVID
When Michael arrived in Moscow, there were very few reported cases of coronavirus in Russia, and its government didn’t seem too concerned.
But a few days before his scheduled departure, when his immune system has bottomed out, Moscow is in lock-down and there are no flights out.
“The problem now is that this facility will start taking on coronavirus patients”, Michael explains. “Which for a group of people with no immune system is a scary situation.”
Back home in Brisbane, Michael’s wife, Rachel, has been moving heaven and earth to get him safely back.
“We're all living in a nightmare as it is…. and I know there's other Australians stuck in other countries. I'm aware of that, but not everyone has had HSCT and got stuck in the middle of it.”
Future of MS
Sydney’s St Vincent’s Hospital is one of three now performing stem cell transplants on MS patients.
But all are still in the clinical trial phase.
“It's very hard for us to say with absolute certainty that the safety is guaranteed and the risks are quantifiable, the data is just not mature yet,” says Dr Nada Hamad of St Vincent’s hospital.
“Of course I understand the frustration of patients not being able to take control of their own destinies and make their own choices.
“But I feel that it's important to appreciate that we are trying our best to be able to offer this treatment safely and in an individualised way to make sure that the risks that we do take are actually reasonable risks to take.”
For further information about AHSCT treatment, please visit:
