STEM CELLS? I’VE NO OTHER CHOICE
Why would anyone want to travel to Russia and then spend thousands on a highly controversial experimental treatment? For Niamh Wishart, it offers the only hope of seeing her two girls grow up...
THE sound of children’s laughter bellows through the house as the kitchen door swings open. It’s a beautiful evening and the front garden of the Wishart family home is alive with chatter and play. Colourful toys, mostly pink, are scattered over the grass while Maisie, 6, and her three-year-old sister Poppie frolic with their neighbourhood friends. Inside the house, their young mother Niamh is sitting stiffly in a dark green, high-back chair.
She can see them from where she is sitting, running around giggling and having fun, but she can’t join in. At just 35, Niamh Wishart can only manage a few small steps with a walking stick.
‘The girls are used to this,’ she says, shrugging slightly. ‘I can’t go running about but we do get out on my mobility scooter quite a bit. I call it taking the smooth with the rough. The upside is that I’m at home with them. If I was up and running I wouldn’t be here as much.
‘They know that there are sacrifices we have to make because Mammy has a disease, but they know I’m always here. They aren’t looking at me going out the door to work wondering when I’m coming back. To keep going you have to put that spin on it.’
Putting a ‘spin’ on it only works for so long. As she admits herself, Niamh would love to be able to go out and work, to run about with her kids, to cook dinner and even clean. Having multiple sclerosis means she can’t.
She is determined not to be defined by the debilitating disease eating into her enjoyment of life but she knows the clock is ticking. In a desperate bid to halt the progression of her MS, she is travelling to Russia in September to undergo an experimental stem cell treatment.
After much research and discussion with her husband, Niamh hopes to undergo a revolutionary new ‘miracle’ treatment known as Autologous Haematopoietic Stem Cell Transplantation (AHSCT or HSCT).
Stem cells — seen as a repair kit for the body — are still a divisive and controversial issue. Ever since htey were discovered, scientists have hoped that they could conquer disease: yet results so far have been painfully slow.
While huge advances have been made, experts still insist there is no proof that they are the solution to life-threatening illnesses and degenerative diseases. Some doctors fear they are simply a modern-day ‘snake oil’ offering false hope to millions – many of whom are so desperate they will understandably try anything, and pay any amount of money, for a cure. In 2014, Dr. George Daley, director of the Stem Cell Transplantation Program at Boston Children’s Hospital, past president of the International Society for Stem Cell Research and a professor at Harvard Medical School warned of the dangers of ‘peddling’ stem cell therapies as a cure for neurological disorders.
‘Finding cures is hard, it takes sometimes decades, it’s extremely expensive and it’s not something that we can just wish and hope for,’ he said. ‘It can only be achieved through very, very hard work.’
Others, however, say there is evidence that stem cells can slow down or possibly even reverse symptoms in some patients. Dr Richard Burt, a pioneer of the treatment in Chicago, has published research suggesting he has halted the progression of MS in at least 80 per cent of his patients for five years.
A recent study on the use of HSCT at Imperial College, London, found that the disease could be ‘frozen’ for up to five years under the treatment. However as the treatment involves an aggressive use of chemotherapy to ‘rest’ the body’s immune system, there is also a risk of death: all told, eight patients in the UK trial died during treatment, the scientists said.
Looking at HSCT treatment, it is not hard to see why it might be considered dangerous.
The first stage of HSCT treatment is known as the ‘harvest’. During this time, the patient will receive a week’s worth of medication that forces the stem cells to overproduce, as well as move out of the bone marrow into the blood stream. They are then frozen and stored for the patient.
The next stage is chemotherapy conditioning. Patients are given powerful doses of a chemo drug that will obliterate any cells left in the blood or bone marrow. The stem cells are then reintroduced to the patient. Slowly, they will graft and the patient’s blood and immune cells will start to reproduce. This process can take weeks, or even months. The patient must take heavy precaution against infection during this time.
Flowers, fruit, vegetables, plants and human contact could cause an infection the patient would never recover from so isolation is a standard precaution.
Once the patient leaves the hospital, the recovery is far from over. The body will continue to adjust to its new immune system over a period of about two years, though the first 100 days pose the most risk for the patient’s recovery.
The treatment is deemed controversial by many and has not been approved here in Ireland. HSCT clinical trials have been conducted in many countries and stage 3 FDA trials are currently being conducted in Chicago. Final FDA approval is expected by 2022. Closer to home, it’s currently on trial in Britain, which means it may not be available to sufferers in Ireland for some time.
Stem cell transplants for MS are also available in several countries, including Israel and South Africa, but the waiting lists are long and in some cases only for residents. In Russia, patients are taken on the basis of how urgently they need
‘It’s an aggressive treatment with significant risks’
treatment. It’s also a cheaper option than HSCT treatment in Mexico or Singapore.
The Russian proponents of this approach to treating MS say that, over the past decade, more than 700 patients have received this treatment, which they claim ‘may’ stop progression of the disease in ‘most’ patients and prevent further deterioration of their quality of life. Claimed efficiency rates are approximately 75 to 80 per cent.
However, not everyone is on board. Following a BBC Panorama programme on a trial of the treatment in Britain, Dr Emma Gray, head of clinical trials at the UK MS Society, said: ‘Ongoing research suggests stem cell treatments such as HSCT could offer hope, and it’s clear that in the cases highlighted by Panorama they’ve had a lifechanging impact.’
However, she warned: ‘Trials have found that while HSCT may be able to stabilise or improve disability in some people with MS, it may not be effective for all types of the condition. We want people to be aware that HSCT is an aggressive treatment that comes with significant risks. It needs to be carried out at an accredited centre or as part of a clinical trial.’
Although it is controversial, and expensive, for Niamh it’s the only chance she has. She will be treated at the AA Maximov Department of Hematology and Cellular Therapy, National Pirogov Medical Surgical Center in Moscow, Russia, under the care of Dr Denis Fedorenko.
The treatment itself costs €50,000. Additional costs, including flights, visas and aftercare are estimated at €20,000. Fundraising is ongoing to help raise the money needed.
Niamh believes that undergoing the treatment, which she has been told will be rigorous and gruelling, is her only chance of halting any further deterioration.
‘I’m ten years into the disease,’ she says. ‘I don’t want to see the next ten years into this disease. I have somewhat of a quality of life now — this is as far as I want to go with this disease. There is a big difference to where I am now to where I could potentially go with MS. I’m doing this for me and my family.’
The decision to put her faith in HSCT has not come easy for Niamh. She will undergo chemotherapy and lose her hair, be separated from her children for 40 days and, most importantly, there is no guarantee the treatment will work. But, she says, ‘I have to try.’
Niamh, from Leixlip, Co Kildare, had just celebrated her 25th birthday when she was diagnosed in 2006.
‘I was a normal student at the time when this was happening to me,’ she says. ‘But I have a medical background so I had my own knowledge. I knew something wasn’t right. I kind of knew before the doctors knew.’
By her side since her diagnosis is her husband Scott. The couple, who have been together for 17 years, now live in Rochfortbridge, Co Westmeath.
‘We met six years before I was diagnosed,’ says Niamh. ‘Scott knew what was coming. He knew what the potential was with the disease. We spoke about it and I laid it out clearly for him. It didn’t make a difference, he’s still here, it didn’t take a stir out of him.
When Scott, 43, was made redundant three weeks after Maisie was born, Niamh needed help and he stayed at home as her carer.
‘He has done that ever since,’ she says, wistfully. ‘He is caring for all of us I guess. Not many people spend as much time together as us. It’s not perfect, but considering the fact that we are living with chronic illness and we are together 24/7 and all the things he has to do for me and the kids, I think we are doing pretty well.’
On a day-to-day basis Niamh struggles with her eyesight, balance, fatigue, mobility, bladder and bowel function. But she insists her disease has not affected her interaction with her two young daughters.
‘They’ve grown up with it,’ she says. ‘They don’t know any other way. I’ve told them Mammy has MS. It was important to tell them and to explain that this isn’t going to kill Mammy.’
Despite her optimistic day-today approach, on a deeper level, an urge to ‘do something’ to stop her MS progressing has led her to make the dramatic decision.
After her initial disappointment at the thought of a long wait for a treatment, Niamh continued her research and discovered its availability abroad.
‘Time is precious,’ she says. ‘I’m maybe 6.5 on the disability scale of 0 to ten. On that scale, zero is fine, ten is dead. If I got to seven, which is fully wheelchair-bound, no responsible centre for HSCT would take me. I need to do this now.’
There are risks. The main risk comes from chemotherapy treatment and subsequent vulnerability to infection — HSCT has a 1% mortality rate. ‘It’s not without its risks but none of the drugs are,’ says Niamh. ‘I feel like I have to do what I need to do. As long as there’s still life in me I am going to do whatever I can.’
FIND out more at facebook.com/NiamhsRocketToRussia/
‘This is as far as I want to go with this disease’ ‘My daughters don’t know any other way’