Discussions about the healing power of stem cells are often focused on the future. We hear about the promise and potential yet to come.…
Discussions about the healing power of stem cells are often focused on the future. We hear about the promise and potential yet to come. And there’s no doubt that we are still in the early days in terms of the clinical applications of stem cells to treat or even cure disease. But it’s not all in the future.
Meet Jennifer Molson
The upcoming issue of Shoppers Drug Mart’s “glow” magazine shares a powerful story about how stem cells are helping people today.
The article focuses on Jennifer Molson who was diagnosed with multiple sclerosis (MS) in 1996. Jennifer was young, healthy, and active. She was working full time, going to college and volunteering with the Ottawa Police Youth Program
But all that was about to change. She started to experience numbness and tingling in her hands and was constantly tired. Soon after diagnosed with MS. After a short time her condition started to decline quickly and her diagnosis was changed to what’s called Secondary Progressive MS—an even more serious condition.
In 2001, Jennifer entered the Canadian MS Bone Marrow Transplant Study led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and the University of Ottawa. The study was funded by the MS Society with the goal of re-growing the immune systems of patients with MS using the patient’s own stem cells.
Do Stem Cell’s Heal?
Jennifer’s experience was not an easy one, nor was it without risks—of seizures, sterility, and even death. But over time, things started to change for her—gradually at first. She tells us that it took almost two years before she started to feel better.
In fact, the improvements that Jennifer experienced were unexpected. The goal of the study was to stop the progression of MS, but Jennifer’s results went further.
If you ran into Jennifer today, you probably wouldn’t know what she’s been through. She’s left her wheelchair behind and today she works full time, she can drive, and she’s completely independent (she even skis).
Jennifer Molson is an inspiration. She’s a reminder that while stem cell research still has a long way to go, it’s changing lives today. We encourage you to read more about Jennifer’s moving story in the upcoming issue of “glow” magazine.
This is the third in a series of blog posts about the success the Ottawa Hospital’s Dr. Harry Atkins is having in treating autoimmune disorders with stem cell bone marrow transplantation. …
This is the third in a series of blog posts about the success the Ottawa Hospital’s Dr. Harry Atkins is having in treating autoimmune disorders with stem cell bone marrow transplantation. We previously featured Tina Ceroni, a Burlington Ontario athlete whose life was sidelined by a rare disease called Stiff Person Syndrome, and Jelissa Morgan, a patient with a crippling condition called neuromyelitis optica who is about to resume her nursing career. Today we share the story of Jennifer Molson, who has been free of all traces of Multiple Sclerosis for 11 years.
MS symptoms eradicated by stem cell treatment
Jennifer Molson was working full time and going to school at night in the hope of becoming a police officer. It was 1996 and she was turning 21. When her left arm started going numb for no apparent reason, it was put down to carpal tunnel syndrome.
When thingsbegan to get worse, doctors considered other possible causes. An MRI confirmed it was Multiple Sclerosis.
Jennifer’s disease came on slowly and tended — as MS does — to wax and wane. Within five years, however, it had taken control of her life. Training for the police was out. Full-time employment became part-time work. Eventually she was unable to work at all. Or drive a car. The once unstoppable young woman needed help doing the simplest tasks, such as cutting her food and getting in and out of the shower. “I couldn’t do anything,” Jennifer says now.
She was getting 24-hour care at the Rehab Centre at the Ottawa Hospital, “learning to how to live with my disability.” She could walk only with the help of forearm crutches or a walker. Life in a wheelchair was imminent. Her neurologist, Dr. Mark Freedman, feared that without some kind of an intervention, “she would become very disabled very quickly.”
Intervention came in the form of a stem cell bone marrow transplant to rebuild Jennifer’s immune system where the MS lurked.
For more than a dozen years, Dr. Freedman has partnered with Dr. Harry Atkins, a clinician/researcher, in treating MS patients with stem cell bone marrow transplants. In essence, they take stem cells from an MS patient and purify and fortify them. The patient undergoes extreme chemotherapy to all but annihilate their diseased immune systems. The robust stem cells are then returned to the patient to rebuild a new — hopefully disease-free — immune system.
Tried about 30 times so far, the treatment has shown strong success in stopping the progression of MS. It has also been successfully used in other autoimmune disorders such as Crohn’s disease, neuromyelitis optic and Stiff Person Syndrome.
In Jennifer’s case, the stem cell transplant did much more than shut down the MS. It eradicated all traces of it. The crutches and walker are long gone. She’s back working full time. As she described in the book Dreams and Due Diligence:
“I downhill ski, I drive a standard. I can skate. I can dance, but not well … I have no rhythm. That has always been the case. Am I cured? I like to use that word. They (Drs. Freedman and Atkins) don’t like to use that word. They’re calling it a lasting remission.”
Now free of all traces of MS for more than a decade, Jennifer is an active advocate for stem cell research and development in Canada, the country where stems cells were discovered. She has lent her support to the Campaign for a Canadian Stem Cell Strategy, which is developing a plan for Canada to follow through on its outstanding research legacy to produce more of the kinds of new treatments she has benefitted from.
“I’m very lucky. I got a second chance at life. The Canadian Stem Cell Strategy will allow what happened to me to happen for thousands more Canadians who are dealing with currently incurable diseases.”
Dr. Harry Atkins’ success in treating a rare disease that can turn active, healthy people into living statues is getting the national attention it deserves this week, thanks to the Journal of the American Medical Association’s publication of his paper, Autologous Stem Cell Transplantation for Stiff Person Syndrome.…
Dr. Harry Atkins’ success in treating a rare disease that can turn active, healthy people into living statues is getting the national attention it deserves this week, thanks to the Journal of the American Medical Association’s publication of his paper, Autologous Stem Cell Transplantation for Stiff Person Syndrome.
The JAMA Neurology paper describes two Canadian women who have had all symptoms of their Stiff Person Syndrome (SPF) disappear thanks to a stem cell treatment that Dr. Atkins and his team at the Ottawa Hospital have developed. Readers of this blog will be familiar with one of the women’s stories — we told you all about Tina Ceroni back in December After our post, Canada AM featured Tina and Dr. Atkins.
This week’s reports, including Elizabeth Payne’s excellent news feature (the “living statue” description is hers) that appeared in the Ottawa Citizen and the National Post, explain how SPS, which strikes about one in a million people, triggers episodes in which muscles seize up uncontrollably, leaving a person rigid. Sheryl Ubelacker of the Canadian Press describes it this way in the Toronto Star:
“SPS is characterized by episodes of stiffness in the muscles and painful muscle spasms, which can be brought on by stress, loud noises or emotional distress. Some people with the disorder are so disabled they are unable to walk or move and may isolate themselves at home to avoid triggering an attack.”
Ms Payne’s story also tells of a third woman, a 53-year-old mother of six named Ingrid Steppan who was told she would likely die from her SPS. A recent transplant patient, she has now “put her wheelchair and walker away.”
Success with MS, Crohn’s and other autoimmune conditions
Dr. Atkins has used this technique with other autoimmune diseases, including Multiple Sclerosis (where he led a multi-year clinical trial involving about 30 patients) Crohn’s disease and neuromyelitis optica. The process involves extracting a patient’s bone marrow stem cells, then purifying and fortifying them. After the patient undergoes extreme chemotherapy, in which their immune system is effectively destroyed, the purified and fortified stem cells are put back to build a new disease-free immune system.
A modest and soft-spoken man, Dr. Atkins does not used the word “cured” when he talks about the patients who have had success with this treatment. He refers to his patients as “in remission.” For Jennifer Molson, an MS patient, that remission has lasted more than a decade. And in the case of Jelissa Morgan, the treatment has allowed her to overcome her crippling neuromyelitis optica and will be resuming her nursing career in September.
The success that Dr. Atkins is having is encouraging and offers great hope for the future. But it also harkens back to the past: the procedure he is refining can be traced back to the groundbreaking work the Canadians Jim Till and Ernest McCulloch did in proving the existence of stem cells in the early 1960s. It’s an area of medical science where Canada researchers excel. And people like Tina Ceroni, Jennfer Molson, Jelissa Morgan … and now Ingrid Steppan are living proof.
We recently featured the story of Tina Ceroni, a Burlington Ontario athlete whose life was sidelined by a rare, insidious disorder called Stiff Person Syndrome.…
We recently featured the story of Tina Ceroni, a Burlington Ontario athlete whose life was sidelined by a rare, insidious disorder called Stiff Person Syndrome. Thanks to a stem cell transplant, Tina’s fitness career — and her life — is back on track. To show her gratitude, Tina raised almost $37,000 for the Ottawa Hospital’s Stem Cell and Bone Marrow Transplant Program. When she was presented the cheque to Dr. Harry Atkins on Dec. 4th, Tina met with two other young women whose lives have been rescued by stem cell treatments: Jelissa Morgan and Jennifer Molson. Today we share Jelissa’s story.
From nurse to patient and (soon) back again
When Jelissa Morgan’s neuromyelitis optica flared up again in early 2012, she was devastated.
The rare immunological disorder, similar to Multiple Sclerosis, inflames the optic nerve and the spinal cord. Jelissa was losing her vision — she couldn’t read or watch movies and had trouble identifying who was talking to her. Walking was difficult. She had serious bladder and bowel problems and her skin itched. ‘My body was in pain,” she says, “but didn’t know how to express it.”
That flare-up, the worst of a series the young woman had experienced since finishing high school, transformed Jelissa from hospital nurse to hospital patient.
Until then, her doctors had kept the condition under control with Prednisone, a synthetic corticosteroid that comes with a slew of potential side-effects such as weight gain, sleep difficulties and mood swings. Some patients develop a humped back and a moon face. Jelissa had all of those symptoms and more.
A switch to a different drug, called Imuran, proved futile: she was on it when the worst flare-up struck.
“They were running out of medication options. My neurologist said, ‘What do you think about a stem cell bone marrow transplant?’ She knew about Dr. Harry Atkins and the work he was doing with MS patients.”
For the past several years, the Ottawa Hospital’s Dr. Atkins, working with neurologist Dr. Mark Freedman, has been treating MS patients with stem cell bone marrow transplants. In essence, he takes stem cells from patients with the most severe cases of the immunological disease and purifies and fortifies them. The patient then undergoes an extreme course of chemotherapy treatments that virtually annihilates their diseased immune system. The robust stem cells are then returned to them to rebuild a new — hopefully disease-free — immune system.
The process has worked well with about 30 MS patients whose disease progression has been stopped. In some cases, symptoms of the disease have diminished significantly and — in at least one case — disappeared entirely.
Dr. Atkins is also using the procedure for people who have other autoimmune disorders such as Crohn’s disease, Stiff Person Syndrome — and neuromyelitis optica.
Jelissa decided to have the experimental stem cell treatment.
“It’s kind of one of those decisions where you don’t want to wait,” she say. “You don’t know when the next flare-up will be. That last flare-up was so bad. Luckily, I was able to regain a lot of the functions I’d lost. But it’s like rolling the dice. You don’t know what could happen with the next flare-up.”
Jelissa received her stem cell transplant in the fall of 2012. She has been free of neuromyelitis optica symptoms ever since.
“I feel better than I did even before the disease began. I have much more energy. I’m off all my pills for the immune disorder and the transplant meds. I’m looking forward to getting my life back on track. That includes buying a car, moving out of my parent’s house and traveling.”
She is excited about returning to nursing in the next few months, after receiving a series of vaccinations to replace the ones lost during the chemotherapy treatment.
“From a patient perspective, a transplant is a hard thing to go through. But I survived. I feel like it’s given me a second chance at life. ”
She strongly supports stem cell research to help more people with diseases like hers.
“Stem cell research opens up so many possibilities. It’s like opening a door and entering a room and you don’t even know what’s in the room yet. It could mean treatments for so many things. There is so much hope there.”
The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells.…
The Canadian MS Bone Marrow Transplant Research Study is a MS Society-funded project to re-grow the immune systems of patients with MS using stem cells. Led by Drs. Mark Freedman and Harold Atkins at the Ottawa Hospital Research Institute and University of Ottawa, the study began in August of 2000. Ten years later, more than half of the 26 patients enrolled have seen their symptoms stabilize and, in many cases, actually improve, unheard of results in the treatment of MS. Yet few people know about this research. As part of our month-long salute to MS and stem cells, we will speak with people involved in every aspect of this study: the doctors and researchers, patients and their families and the people behind the scenes. Today, an article by Jennifer Molson, a patient in the study.
I was 21 when I was diagnosed with MS. It was 1996, and I was healthy – running two km everyday, working full time, taking college courses and volunteering two days a week with the Ottawa Police Youth Program. I wanted to become a police officer. And, like any girl, I dreamed of walking down the aisle on my wedding day and dancing with my dad and husband.
Then I started to notice tingling and numbness in my arms and hands. I started to feel tired, too tired to run most days, and, when I worked out at the gym, I found the heat exhausting.
My family doctor thought the numbness was due to carpal tunnel syndrome in my wrist and the tiredness a result of working too much and staying out too late. I slowed down a bit, but the symptoms remained. Soon after, I had a lumbar puncture and a MRI scan. The diagnosis: Relapsing/Remitting MS.
Pretty quickly, I was transferred to the MS Clinic at the Ottawa General Hospital run by Dr. Mark Freedman. Over the next six years, I had multiple relapses: I lost function in my arm, experienced numbness in my legs and went through periods of extreme dizziness and nausea. I never knew how or when my MS would strike, and after each relapse I was left with more disability. I realised that becoming a police officer was not in my future.
The summer of 2000 was great, but by September I began to notice a lot of new symptoms and, by the beginning of 2001, I could no longer work. I was barely able to stand, had no sensation from mid-chest to my toes and was constantly nauseous. An MRI scan showed lesions on my brain stem. My diagnosis was changed to Secondary Progressive MS.
That year, Dr. Freedman told me about a new stem cell transplant study for patients with MS. They would destroy my immune system using chemotherapy and then use stem cells from my own bone marrow to essentially grow a new immune system. Their goal was to stop the progression of the disease, not to fix damage that had already been done. The best I was hoping for at that point was to not get any worse.
So, even though the procedure was experimental and involved risks, including seizures, sterility, and even death, my decision was easy. I had tried everything else, so I had no fear. My boyfriend (now husband), however, was terrified, but supported my decision. You know it’s pretty bad when death is a viable option and what you’re doing to help could actually kill you in the process.
After months of tests, surgery, stem cell recovery, chemo treatments and injections I was ready to begin the transplant stage on July 4th, 2002. I had my stem cells harvested, and over the next three weeks they were transplanted into me.
The first six to eight months after the transplant are a blur and involved overwhelming tiredness and lots of medical appointments. My life was scheduled day by day from February of 2002 until the time I was done. Even now, I still have to go for tests and follow-ups, but it’s a longer leash.
When I look back it was probably about two years before I really started to feel better. And it was sometimes so gradual that I didn’t realize I was getting better. One day I realised I had walked to my mailbox and back without a cane. Soon after, I walked into Dr. Freedman’s office and he looked down and said, “Jen, you’re wearing high heels!” For someone who had been wheelchair-bound a couple of years earlier, this was a remarkable thing.
I approach my eighth year post-transplant mark this July. I’m no longer taking any medication. I returned to work full-time, passed my driving test, am completely independent, inside my home and out. I’ve even gone downhill skiing. I was married seven years ago and, yes, I did dance at my wedding.
I still have MS, but I don’t. For many people with this disease, your whole life is spent coping with getting worse. For me, I’m fortunate to be coping with getting better.
Jennifer Molson was patient number six in the Canadian MS Bone Marrow Transplant Research Study. She is also a True Blood expert.
In addition, we have two special projects planned.
The first is a multi-part series about the Canadian MS Bone Marrow Transplant Research Study, an ongoing trial in which a team of researchers are re-growing the immune systems of MS patients with stem cells. It’s pretty amazing stuff, and it’s happening right here in Canada. We’ll be talking to people involved in every aspect of the study: the doctors and researchers, patients and their families, and those working behind the scenes to ensure that projects like this are being funded and incorporated into standard care. The first part of this series is an article (see below) by Jennifer Molson, patient number six in the study.
The second project involves you. People have lots of questions about how stem cells are being used to treat MS. So this month, if you have a question or a message, send it to us. We’ll compile the responses and and pass them along to a team of MS experts: Dr. Harry Atkins, one of the physicians leading the MS Research Study; Jennifer Molson, a patient in that study; and Marjorie Bowman, RN, the study’s Research Coordinator. At the end of the month, we’ll share their responses on our blog.
So get your questions to us – send us an email, post on our facebook page, make a comment on our blog or give us a call – this is a rare opportunity to get answers directly from those treating and receiving treatment for MS.
We hope you’re as excited about these projects as we are, and that you’ll follow along on our blog and social media pages as we explore how stem cells are being used to treat MS.
Today is the official launch of the Canadian Stem Cell Strategy & Action Plan to chart the course for Canada to lead the way in bringing up to 10 breakthrough therapies to the clinic by 2025.…
Today is the official launch of the Canadian Stem Cell Strategy & Action Plan to chart the course for Canada to lead the way in bringing up to 10 breakthrough therapies to the clinic by 2025.
The 10-year Action Plan outlined in a new report Following Through: Realizing the Promise of Stem Cells – A Canadian Stem Cell Strategy & Action Plan (2015-2025) was created by scientists, medical professionals, leaders from major health charities, industry experts and philanthropists. It is backed up by an in-depth study by KPMG and has been endorsed by an international panel of experts. The report explains how Canada can transform health care and reduce suffering and death from cardiovascular diseases, cancer, diabetes, vision loss, spinal cord injury and other devastating conditions.
Multiple sclerosis survivor Jennifer Molson was on hand at a press conference on Parliament Hill to support the Action Plan. Molson has been symptom-free for 12 years after receiving a stem cell transplant in a Canadian-led clinical trial. “I’m living proof of the tremendous potential that exists with stem cell research. I got a second chance at life. This Action Plan will help others like me live free of illness and disease.”
“Canada has always been a leader in stem cell research,” said James Price, President and CEO of the Canadian Stem Cell Foundation. “With this Action Plan and the infrastructure already in place, we have the capacity to transform health care in Canada by helping millions of Canadians through new, life-changing therapies and long-term economic growth.”
Dr. Janet Rossant, head of research at SickKids Hospital, said the time is right for Canada to seize the opportunity to move stem cell science forward: “We are at an incredibly exciting time in science where our research is leading to new treatments and therapies.”
“I’m proud to be a part of this historic coalition,” said Dr. Allen Eaves, Founder and CEO of STEMCELL Technologies Inc. “The Action Plan is ready to move forward and already has received private-sector support. Support from all governments will ensure companies like mine are able to create local jobs and, most importantly, transform stem cell research into tangible products and lifesaving therapies.”
- The Canadian Stem Cell Strategy & Action Plan calls for a $1.5-billion public-private investment over 10 years, including a $50-million average scaled annual commitment by the Government of Canada.
- The Centre for Commercialization of Regenerative Medicine estimates the Canadian Stem Cell Strategy & Action Plan could generate more than 12,000 jobs for Canadians via the growth of existing companies and the development of new enterprises that reach global markets.
- In 2013, more than $200 billion was spent on health care in Canada. Two thirds of that money was used to treat incurable diseases. Stem cell research, cell therapy and regenerative medicine are working towards treatment options for these diseases.
A team led by two doctors from The Ottawa Hospital has proved that stem cells, used in combination with chemotherapy can halt the progression of aggressive multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.…
A team led by two doctors from The Ottawa Hospital has proved that stem cells, used in combination with chemotherapy can halt the progression of aggressive multiple sclerosis (MS) and — in some cases — help patients recover from the autoimmune disease.
In a paper published today in the prestigious medical journal The Lancet, Drs. Harry Atkins and Mark Freedman show that bone marrow stem cell transplants can eliminate all signs of damaging brain inflammation by rebuilding a patient’s immune system.
MS occurs when a person’s own immune system attacks the myelin protective sheath that covers nerves, causing inflammation and damage that inhibits communication between cells in the nervous system — the brain and spinal column.
The researchers took bone marrow stem cells from patients with aggressive MS and purified them in a laboratory. After the patients underwent extreme chemotherapy, their robust stem cells were returned to rebuild new immune systems.
The clinical trial involved 24 patients and tracked their progression over several years. According to The Ottawa Hospital’s news release, after the treatment:
- Not a single participant experienced a clinical relapse (zero relapses in 179 patient-years), whereas before treatment, the participants experienced an average of 1.2 relapses per year.
- Not a single new active inflammatory lesion could be detected in the brains of any of the participants.
- Not a single participant required MS-specific drugs to control their disease.
- 70% of participants experienced a complete stop in disease progression.
- The average rate of brain shrinkage, typically a measure that correlates with MS progression, returned to levels associated with normal aging.
- 40% of participants experienced some lasting reversal of such symptoms as vision loss, muscle weakness and balance problems.
- Some participants were able to return to work or school, regain the ability to drive, get married and have children.
In Jennifer Molson’s case, the treatment eradicated all traces of the MS that had taken over her life. Prior to taking part in the study, she was receiving 24-hour care at the Rehab Centre at the Ottawa Hospital, “learning to how to live with my disability.” She had quit her job and could only walk with the help of forearm crutches or a walker. Life in a wheelchair was imminent.
Now free of MS symptoms for more than a dozen years, Ms. Molson has resumed a demanding career and a busy schedule. As she described in the book Dreams & Due Diligence: Till and McCulloch’s Stem Cell Discovery and Legacy, “I downhill ski, I drive a standard. I can skate. I can dance … Am I cured? I like to use that word. They (Drs. Atkins and Freedman) don’t like to use that word. They’re calling it a lasting remission. I’m very lucky. I got a second chance at life.”
While his recovery was less dramatic, Vancouver’s Aaron Prentice said his quality of life is much improved: “I am now five years post-transplant,” he wrote in the Foundation’s Cellections newsletter last year. “I have not had a relapse and no longer require a cane. My gait has improved significantly and continues to do so. My arms are symptom free.”
The Ottawa Hospital, the MS Society of Canada and the University of Ottawa have produced a video about the clinical trial that can be seen here: https://www.youtube.com/watch?v=vW86owclZes&feature=youtu.be
Marjorie Bowman, trial coordinator and advanced practice nurse at The Ottawa Hospital, expressed her admiration for the remarkable “courage and dedication” demonstrated by the trial’s participants. “We thank the patients from across Canada who participated in this clinical trial, as well as their family members,” she said.
The treatment, Dr. Atkins explained in Dreams & Due Diligence, is a variation on the bone marrow ablation that leukemia patients undergo.
“MS is an autoimmune disease where the immune system is attacking a patient’s brain. The simple concept behind our treatment is, ‘Let’s just get rid of the old immune system and put back the seeds, let a new one grow and hope that it won’t learn the same lesson.’
“Because stem cells don’t carry over immunologic memory. That’s really what we have tried to do. We had a track record for doing transplants for leukemia and knew how we could damage the immune system to remove it. We just applied the lessons we learned in care of patients with leukemia and applied them to this new setting.”
Not for everyone
However, the therapy is not for all MS patients.
“It is only used in very severe cases because participants face a significant risk of infection and other side-effects, including death,” Dr. Atkins said in the media release. “The risks are similar to those faced by leukemia patients undergoing this kind of treatment.”
Indeed, one participant in this study died of liver failure due to the treatment and another required intensive care for liver complications. The treatment regimen was modified to reduce toxicity, but all participants still developed fevers, which were frequently associated with infections.
People who are interested in this therapy should speak with their own neurologist, who can request a referral to The Ottawa Hospital MS Clinic or another major hospital with experience in this area. The Ottawa Hospital cannot treat people without valid Canadian health coverage.
While The Lancet paper is focused strictly on the MS patients, Dr. Atkins has also seen some success treating patients with other immunological disorders such as Stiff Person’s Syndrome, neuromyelitis optica and Crohn’s disease.
And Dr. Freedman has gone on to co-lead a new chemo-free MS clinical trial using mesenchymal stem cells. “These cells have been shown, at least in early studies in humans, to repair — period,” he explained recently. “But they happen, at the same time, to have an anti-inflammatory effect. So they may be able to accomplish both things together. Without the need of any chemo, there is very little risk to the people taking it.”
A turning point for MS
Yves Savoie, President and CEO, MS Society of Canada, called publication of the paper “a turning point” in MS care. “What started as a bold idea has translated into a treatment option for people living with highly active, relapsing MS.”
The $6.47 million trial was funded by the MS Society of Canada and its affiliated Multiple Sclerosis Scientific Research Foundation. The research was also supported by The Ottawa Hospital Foundation, The Ottawa Hospital Department of Medicine and Canadian Blood Services.
Two days after we blogged about the scientific concerns regarding Gordie Howe’s experimental stem cell treatment in Tijuana, another example of Canadians seeking unproven therapies abroad has hit the media.…
Two days after we blogged about the scientific concerns regarding Gordie Howe’s experimental stem cell treatment in Tijuana, another example of Canadians seeking unproven therapies abroad has hit the media.
Alberta businessman Lee Chuckry told CBC News in Manitoba that he spent $34,000 for a stem cell therapy in India only to find his MS got worse and that “I think it’s just a big fraudulent scam.”
Chuckry, who has been battling MS for over a decade, was recruited into the stem cell trial by Doug Broeska, founder of a Winnipeg-based company called Regenetek Research. Broeska recruited patients for the the so-called “liberation” therapy pioneered by Italian researcher Dr. Paolo Zamboni in 2008. The treatment, dubbed chronic cerebrospinal venous insufficiency, or CCSVI, involves widening the patient’s neck veins to improve blood flow. The Indian clinical trial combines CCSVI and the injection of stem cells into the veins and spinal column.
In March 2013, Chuckry flew to India for the trial. “It comes to a point of sort of desperation of trying to find the next thing that might help me, so I’m always on the search for that and I came across this,” he told the CBC. But the attacks came back upon his return home. His attempts to get in touch with Broeska about his new MS symptoms were unsuccessful and he received none of the follow-up common in clinical trials, such as MRIs and physical examinations.
According to the CBC, Broeska claimed on his LinkedIn profile that he earned a PhD at the University of Manitoba, but the university could not confirm that and his LinkedIn profile was down yesterday. The International Cellular Medicine Society, of which Broeska claims to be a member, has no record of his membership. And the ethics committee at India’s Inamdar Hospital in India, where the clinical trial is underway, ordered Broeska to step down as principal investigator because his lack of credentials and follow-up “violated international ethical standards.”
In addition, the Winnipeg Free Press reported this morning that the University of Winnipeg has cancelled a joint project with Regenetek Research.
Over the last few years the much publicized potential of stem cells to treat a variety of diseases has raised hope among patients suffering from conditions for which there currently are no cures. This, in turn, has led some less than scrupulous companies across the globe to capitalize on that hope by marketing costly stem cell therapies that do not have the support of proven clinical evidence. For more information, please visit our Treatment Abroad page.
Both the Howe report and this week’s MS controversy point to the need for Canada to make stem cell research and development a national priority. As James Price, Foundation President and CEO, told the Ottawa Citizen earlier this week, “stem cell tourism should be a wake-up call that Canada needs to prioritize funding for stem cell therapies.” He says it illustrates the need for the Stem Cell Strategy & Action Plan, with its goal of delivering five to 10 new treatments to clinics within 10 years. He told the paper that the Action Plan will give Canadians confidence “that new therapies are a priority and ultimately, Canadians will have first access to these therapies.”
Indeed, Canada is a world leader in stem cell research. MS survivor Jennifer Molson has been symptom-free for 12 years after receiving a stem cell transplant in a clinical trial run by Dr. Harry Atkins at the Ottawa Hospital. “I’m living proof of the tremendous potential that exists with stem cell research. I got a second chance at life.” said Molson in declaring her support for the Strategy.
When it comes to treating multiple sclerosis (MS), Dr. Mark Freedman would like to move beyond damage control.
“We can limit, to some extent and in some cases completely, the damage,” says Dr.…
When it comes to treating multiple sclerosis (MS), Dr. Mark Freedman would like to move beyond damage control.
“We can limit, to some extent and in some cases completely, the damage,” says Dr. Freedman, a clinician/researcher at the Ottawa Hospital Research Institute. “But fixing the damage that’s been done? Not yet. “
Fixing the damage done by MS is the ultimate goal of a new $4.2-million clinical trial that Dr. Freedman is co-leading with Dr. James J. Marriott of the University of Manitoba in Winnipeg. It’s called MESCAMS (for MEsenchymal Stem cell therapy for CAnadian MS patients).
“The excitement surrounding the MESCAMS has been tremendous,” says Yves Savoie, President and CEO, MS Society of Canada, a major supporter of the clinical trial. “Not only is Canada fortunate to have two trial sites in both Ottawa and Winnipeg – accepting a total of 40 Canadian participants – but MESCAMS is also part of a larger international research effort studying mesenchymal stem cells that pools scientific resources and expertise from nine countries. This level of collaboration will yield important answers about the efficacy of cell-based treatments.”
Found mostly in the bone marrow, fatty tissue and cartilage, mesenchymal stem cells have a natural anti-inflammatory effect that makes them an intriguing possibility for treating MS, which occurs when a person’s immune system attacks and inflames the protective sheath (myelin) covering nerves. Myelin damage snags the signals that flow from the brain through the nervous system to the rest of the body.
“These cells possibly will act like anti-inflammatory drugs to control the disease,” says Dr. Freedman. ”But what we’re really looking for is the potential for something to heal up, for a sign that these cells are doing something. Other people have noted it in the optic nerve system, which is actually an extension of the brain and is affected by MS.”
Readers may be familiar with the story of Jennifer Molson, the Ottawa woman whose MS symptoms were eradicated by a stem cell bone marrow transplant conducted by Dr. Freedman and Dr. Harry Atkins as part of an earlier clinical trial. Each trial participant underwent a harrowing course of chemotherapy that virtually destroyed their immune system before being given a fortified version of their own bone marrow stem cells to rebuild it. With MESCAMS no such chemo bombardment is necessary.
“We don’t exactly know why Jennifer, and others in the trial, recovered. We think the reason is we were able to curb the inflammatory response to the point where the body could heal. These cells that we’re using (mesenchymal stem cells) have been shown, at least in early studies in humans, to repair — period. But they happen, at the same time, to have an anti-inflammatory effect. So they may be able to accomplish both things together. And without the need of any chemo, there is very little risk to the people taking it.”
The real challenge, says Dr. Freedman, will be measuring — and scientifically documenting — repair, if it happens. “When was the last time you heard something that could repair things in MS? Nobody’s been able to show it. So we’re hoping we will be able to see it and measure it. That’s the real goal of this study. If we can all show the same signal through nine or 10 sites around the world doing this, then we’re going to have the evidence we need to move to the next stage, which is doing this en masse with people who have already acquired damage . That’s what our MS patients are all hoping for.“
However, Dr. Freedman urges caution. This is an early stage clinical trial. If the mesenchymal stem cells do affect repair, it may be minimal. “The primary outcome is going to be the effect on gadolinium-enhanced lesions in MS as shown by MRI. It will prove whether we have biologically viable cells capable of creating an effect that can be measured in humans. It may sound trivial, but it’s never been done.”
Editor’s Note: MESCAMS organizers have published a Frequently Asked Questions page about the trial here (http://bit.ly/1ES3jN1). Full eligibility criteria are available here(https://clinicaltrials.gov/show/NCT02239393).