Acute kidney injury and chronic kidney disease— newfound hope for treatment
Researchers at The Ottawa Hospital are working together to help prevent and treat acute kidney injury and chronic kidney disease.
Category: World-Leading Research
Stem cell potential
Acute kidney injury affects one in five intensive care patients. A staggering fifty percent of those patients will not survive.
Doing the rounds of the intensive care unit several years ago, nephrologist Dr. Kevin Burns was struck by the number of patients with acute kidney injury. While they had come to intensive care for other serious illnesses, experiencing low blood pressure, shock, infections, blood loss after an operation, or needing to take certain medications, had injured their kidneys.
“Despite ongoing research in this area for over 60 years, there is no treatment,” said Dr. Burns. “Things have been tried to help the kidneys recover and absolutely nothing has worked to date.”
That is until now. Dr. Burns and his fellow researchers at The Ottawa Hospital Kidney Research Centre are uncovering ways to help kidneys recover from injury and to prevent it from happening in the first place.
Nephrologist and senior scientist Dr. Kevin Burns is investigating how stem cells could regenerate kidneys after acute kidney injury.
Chronic kidney disease – preventative research and early treatment
While exciting progress is being made in treating acute kidney injury, researchers at The Ottawa Hospital are also looking into ways to improve detection and treatment of chronic kidney disease.
“If we can catch the disease earlier, treatments will be more effective at preventing or delaying kidney failure. Any way that we can buy time and prevent or delay losing kidney function will be invaluable to patients,” said researcher Dr. Dylan Burger, a world expert laboratory scientist at The Ottawa Hospital’s Kidney Research Centre.
He is developing a diagnostic test that can predict if a person is at risk for developing kidney disease rather than relying on the current tests which show when it is already present, often at an advanced stage.
World-first technique for early detection
In the lab, Dr. Burger’s team looked at what happens at the cellular level when people start to develop kidney disease and identified microparticles as the problem. These are tiny pieces that come off a cell when it’s stressed or injured and are released into the blood or urine causing damage to the kidney.
In response to this finding, the team has developed a technique to count microparticles in urine. This technique, which is still in the research phase, allows any patient’s urine to be tested to accurately determine their risk for developing kidney disease.
The results of this approach have been published and it is now being used in approximately 20 different labs around the world. A standardized technique is being developed so that any lab in the world can use the same diagnostic test for patients.
World expert laboratory scientist Dr. Dylan Burger watches student researcher Ozgun Varol.
World-class expertise
These studies are only part of the kidney research taking place at the Ottawa Hospital. As one of Canada’s largest health research centres, researchers and clinicians have tremendous opportunity to learn from each other and work collaboratively to bring treatments from the lab to the bedside.
The expertise of these scientists, the quality of their kidney research, and the number of publications is attracting researchers from around the world. This level of excellence and a resolve to remain at the forefront of research and discovery will directly translate into improved treatment and outcomes for patients.
To learn more about the leading research of The Ottawa Hospital and the life-changing innovations that are improving patient lives, please click here.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Kidney
Originally published: July, 2019 Updated: August, 2022
Update: Recently, June had to go back on hemodialysis after complications of being on peritoneal dialysis for eight years. As she awaits another kidney donor, June continues to watch her family grow. She now has four grandchildren, two girls and two boys. In August 2022, we were thrilled to announce a $10-million gift from the Jones family to the Campaign to Create Tomorrow. Read more about their incredible gift.
June Jones lives a double life. During the day, she is busy, making cookies with her two granddaughters, working in her garden, and enjoying life. During the night, she sleeps hooked up to a dialysis machine. June needs a new kidney.
June making cookies after Christmas with her granddaughter.
The 58-year-old has been living with kidney disease for 30 years — over half her life.
In April 1989, not long after her second child was born, June felt extremely run down. Her physician was concerned she had too much blood in her urine and sent her to a nephrologist.
He diagnosed her with IgA nephropathy, disease caused by her body’s immune system attacking her kidneys.
June started on various medications after being diagnosed, but within nine years her disease had progressed, and her kidneys stopped working completely. She started dialysis in 1998.
“There is no cure for renal disease,” said June. “Once your kidneys fail, you’re put on dialysis or have a transplant. Your life is never normal.”
What kidneys do
The function of the kidneys is to remove waste and extra water from the blood to make urine. When kidneys stop working and no longer clean the blood, toxins accumulate in the body, and this can be fatal. Dialysis is an artificial method of cleaning the blood. It sustains a person’s life but is not a cure.
There are two different forms of dialysis. Hemodialysis removes waste products and extra water from the blood by circulating and filtering it through a machine. This is the most common form of dialysis that is often provided to patients at the hospital. Peritoneal dialysis circulates a fluid through the lining of your abdomen, or peritoneum, and the waste products from the blood pass into this fluid.
There are almost 1,000 patients on dialysis in the Ottawa area. Just over two hundred are on peritoneal dialysis. Dr. Brendan McCormick, Medical Director of the Home Dialysis Program, said some patients have been treated for over a decade on peritoneal dialysis but more typically patients spend about three years on this therapy. People leave peritoneal dialysis once they receive a kidney transplant, however, some need to transfer to hemodialysis due to complications of therapy.
The Ottawa Hospital Home dialysis program has the highest rate of kidney transplant in the province. For many patients, peritoneal dialysis serves as a bridge to kidney transplant.
Needing life-saving dialysis
According to a report by the Canadian Institute for Health Information released in December 2018, only 16 percent of Canadians on dialysis survive past 10 years. However, up to 74 percent of Canadians with a kidney transplant still have a functioning kidney after 10 years.
June was only on dialysis for six months before she received the call that a donor match had been found. On November 28, 1998, June received a kidney transplant from a deceased donor.
“It lasted four months shy of 15 years,” June said. “Then, the disease reappeared. I’ve been back on dialysis now for six years.”
In the Ottawa Region, 52 people have received kidney transplants this year. Unfortunately, there are still 165 people are on a waiting list.
“We need to do a lot of transplants to get people off dialysis to keep them alive longer with a better quality of life,” said Dr. Ann Bugeja, nephrologist and Director of the Living Kidney Donor Program. “We know that getting a living donor kidney is the best treatment for end-stage kidney disease and it lasts longer than getting a kidney from a deceased donor.”
When June’s kidney transplant failed six years ago, she had to go back on hemodialysis. She switched to peritoneal dialysis in July 2013. Once again, she has a dialysis machine at home, but this time she does dialysis for nine hours every night. It cleans her blood while she sleeps.
June’s nightly routine is a hassle and not a permanent solution. The membrane around her stomach has started to harden, which means the fluids can’t move back and forth as easily. What this means is that June will have to go on hemodialysis. The technology hasn’t changed in the 20 years since she was on it before and she remembers too vividly how it gave her severe headaches and was painful.
Making a difference for future generations
Russ and June Jones with their family at The Ottawa Hospital. The Jones family made a $1 million donation to support kidney research at The Ottawa Hospital.
June needs a new kidney. She is on a Canada-wide waiting list for one.
“Giving a kidney can change somebody’s life,” said Dr. Bugeja.
June lives with the daily hope of a second transplant.
She and husband Russ know first-hand how important research is to improve outcomes for people suffering with kidney disease. They heard researchers at The Ottawa Hospital were making great strides finding solutions to kidney diseases, including detecting kidney disease early and looking at the potential of stem cells to heal injured kidneys.
They decided the only way to make a difference for future generations of patients was through research and made a $1 million donation to support kidney research at the Kidney Research Centre at The Ottawa Hospital.
Their support will enable the research team at the Kidney Research Centre to continue to advance knowledge and improve the care of patients with kidney disease through world-renowned studies and research.
June’s children are now adults, married, and parents themselves — each with their own adorable little girl.
On January 8, 2019, the entire family was at The Ottawa Hospital Kidney Research Centre to unveil a plaque outside the Jones Family Foundation Kidney Research Laboratory. The plaque commemorates their incredible support of kidney research.
“I hope with research advancements, I will live to see my grandchildren’s memorable events,” said June.
“I hope to be there for their high school graduations, university graduations, their wedding days, and when they have children of their own. I also hope great strides are made so that their generation will find a cure.”
Listen to Pulse podcast and hear June Jones in her own words explaining what it’s like waiting for a second kidney transplant and why research is so important.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Donors, Kidney, Patient Care
Published: June 2019
Heather Harris was driving her fiancé to a golf tournament one morning in 2001 when her right foot went numb. By the end of the day, the numbness had spread up the entire right side of her body.
The then-24-year-old Thunder Bay resident had an MRI, which showed signs of multiple sclerosis (MS). The numbness was her first MS attack.
MS is a devastating disease that occurs when the immune system—which protects against foreign organisms such as viruses or bacteria—mistakenly attacks the body’s own central nervous system, which includes the brain, spinal cord, and optic nerve.
Heather Harris preparing herself prior to her transplant operation.
Heather met with neurologist and MS specialist Dr. Mark Freedman just a few weeks before her wedding. Heather’s disease was progressing rapidly. Dr. Freedman told her she would be in a wheelchair within five years.
Dr. Freedman and hematologist and scientist Dr. Harold Atkins were leading a world-first clinical trial, investigating whether patients with early, aggressive MS would benefit if their immune system was wiped out with high-dose chemotherapy and then regenerated with blood stem cells.
The stem cell treatment seemed her only hope. Heather and her husband moved to Ottawa for a year while she took part in the trial. She had the stem cell transplant in November 2006.
“It’s now 12 years since my stem cell transplant. I really feel like I’m cured,” said Heather who has no symptoms of the disease. She works full-time as a school principal, and is back to camping, skiing, running and driving a manual shift car.
Heather and her husband wanted to have a baby. With the help of in vitro fertilization, Heather had a baby girl in 2016. She said her little Zoe is the second miracle in her life.
In June 2016, Drs. Freedman and Atkins published the results of their successful clinical trial in The Lancet, a top medical journal. To date, more than 50 MS patients, like Heather, from all over Canada have undergone this treatment, which eliminated all signs of damaging active brain inflammation.
MAY 26, 2019, OTTAWA, ON – Close to 600 runners laced up their running shoes to support The Ottawa Hospital at Tamarack Ottawa Race Weekend. Together, they raised $296,060 by choosing to Run for a Reason and support an area of The Ottawa Hospital close to their hearts.
Since 1998, Run for a Reason has united individuals and teams, family, friends and employees of The Ottawa Hospital for one common cause—to support eastern Ontario’s most important health care hub. Funds raised will help transform patient care and advance research.
Nora Shipton returned as team captain of Preemies 4 Preemies this year. Her team raised funds for The Ottawa Hospital’s neonatal intensive care unit. She loved the experience of being part of something special that brought so many of her family and friends together. “I can’t wait to do this again next year. We had a lot of excitement on our team and it feels heartwarming to have so many people come out and support us.”
It’s this kind of community support, which makes Run for a Reason such a special fundraiser for The Ottawa Hospital. Tim Kluke, President and CEO of The Ottawa Hospital Foundation, said he sees it year after year. “The energy never disappoints. I know for each participant, whether they ran or walked, there is special meaning behind why they are fundraising for The Ottawa Hospital. These are our ambassadors who will leave a lasting legacy as we continue to make significant strides in research and patient care.”
“These are our ambassadors who will leave a lasting legacy as we continue to make significant strides in research and patient care.”
Tim Kluke, President and CEO of The Ottawa Hospital Foundation
The Ottawa Hospital is one of Canada’s largest learning and research hospitals, with more than 1,200 beds, approximately 12,000 staff members and an annual budget of about approximately $1.3 billion.
Our focus on learning and research helps us develop new and innovative ways to treat patients and improve care. As a multi-campus hospital affiliated with the University of Ottawa, we deliver specialized care to the Eastern Ontario region and our techniques and research discoveries are adopted around the world. We engage the community at all levels to support our vision for better patient care.
From the compassion of our people to the relentless pursuit of new discoveries, The Ottawa Hospital never stops seeking solutions to the most complex health-care challenges. For more information about The Ottawa Hospital, visit ohfoundation.ca.
Story by Vesna Zic-Côté
“In 2012, I was diagnosed with early stage breast cancer. Despite the standard treatment of surgery, chemotherapy, radiation and hormonal treatment, the cancer returned four years later, having spread to my lungs, bones and lymph nodes.
I received my diagnosis of incurable stage 4 metastatic breast cancer on my son’s birthday. He was nine.
My world as I knew it ended. I was sitting upstairs on my bed. I could hear the kids playing downstairs. I called my husband at work and he came home and we cried.
It is a tradition in our home that on our kids’ birthdays, we go out to a restaurant of their choosing for dinner. So on the day my world ended, I sat in a restaurant and ordered some food and tried to eat cardboard, but couldn’t get the food to go down. I looked at the birthday boy and held the tears in, and my heart shattered in a million pieces.
Metastatic breast cancer is treatable, but not curable. When I was first diagnosed, my life expectancy was being measured in months. Now with cautious hope, it might be a few years. I go to the Hospital every 28 days to get injections. They are part of a series of targeted treatments I receive to keep the cancer cells at bay. One day, the cancer will figure out how to grow despite this treatment, and I will move onto something else. And I’ll continue this endless cycle of treatments and scans and progression and change until I am out of options. But I am a 43-year-old mother. And wife. And daughter. And sister. I need more time. Time to see my young children through elementary school. Time to watch my family grow and share in all the joys that life brings. Time to celebrate anniversaries with my husband and birthdays with my niece and nephews. Time with my beloved family and friends.
There is so much that needs to happen to make this a reality for me. I will need new treatments when my current regimen stops working – because it will stop working. I need research in cancer therapies and a health-care system that is streamlined and accessible.
Sadly, early detection does not prevent all cancers from returning and spreading. We need research to understand why, and treatment to extend our lives.
When I was first diagnosed, my focus was limited, directed inwards, focused on those dearest to me. During that time of learning about this new world, I absorbed every detail I could about metastatic breast cancer; living with metastatic breast cancer, treating metastatic breast cancer, dying metastatic breast cancer. A few names came to the forefront; those making noise, shifting opinions, moving the dial on research and progress. Months into treatment, when I could finally breathe again, I knew that I wanted to be part of this movement, part of the noise, part of the shift. I needed to validate this situation that I didn’t ask for in order to accept that it was part of my story whether I liked it or not.
For now, I have energy to cast outward. Not every day, but some days. Writing, fundraising, speaking, meeting. And I would say that the way I live my life has influenced my children who actively participate in my fundraising efforts with enthusiasm. They don’t need to feel embarrassed that their mom has cancer. Instead, they can feel like they are doing something to help me by climbing trees and selling apples, doing presentations on their fundraising efforts, wearing pink laces, and making signs, helping the doctors and researchers to find better medicines. Regardless of where we eventually land, I want them to be able to look back on all the good things that they did, and know that their efforts warmed many, many hearts… mine most of all.
On behalf of all of us living with incurable cancer – finding joy between injections and scans and blood work and appointments, living with hope and making a difference – thank you for your support.”
– Vesna
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Cancer
April 6, 2019, OTTAWA, ON – A sold-out crowd was brought to their feet when Dr. Natasha Kekre and Dr. Arleigh McCurdy were announced the winners of The Ottawa Hospital’s Dancing with the Docs Gala, presented by MD Financial Management, on Saturday night. Nine physicians and researchers partnered with a dance professional from Arthur Murray Dance Studio to compete for the Medicine Ball trophy. Scores from a panel of four judges were combined with the votes given for each contestant’s fundraising efforts.
This annual fundraiser raised $455,156 supporting innovative patient care and world-class research at The Ottawa Hospital. Tim Kluke, president of The Ottawa Hospital Foundation, said it was a thrilling night. “This truly is the most entertaining fundraiser I’ve seen in our city. Where else could you have nine, active, working doctors take to the stage and put on a show? It’s a big party and the whole room gets involved. It’s really a night like no other in our region. Thanks to the incredible success of Dancing with the Docs, funds will be supporting ground-breaking cancer research, our orthopaedic department, the SIM Centre, women’s health initiatives and so much more.”
“Thanks to the incredible success of Dancing with the Docs, funds will be supporting ground-breaking cancer research, our orthopaedic department, the SIM Centre, women’s health initiatives and so much more.”
Tim Kluke, President and CEO of The Ottawa Hospital Foundation
The fancy footwork of the nine competitors from The Ottawa Hospital was contagious. After the official ceremony was over, guests hit the dance floor at the Hilton Lac-Leamy to show off their own dance moves, potentially vying for a spot to compete next year.
The Ottawa Hospital is one of Canada’s largest learning and research hospitals, with more than 1,200 beds, over 12,000 staff members and an annual budget of approximately $1.2 billion.
Our focus on learning and research helps us develop new and innovative ways to treat patients and improve care. As a multi-campus hospital affiliated with the University of Ottawa, we deliver specialized care to the Eastern Ontario region, but our techniques and research discoveries are adopted around the world. We engage the community at all levels to support our vision for better patient care.
From the compassion of our people, to the relentless pursuit of new discoveries, The Ottawa Hospital never stops seeking solutions to the most complex health care challenges.
For more information about The Ottawa Hospital, visit ohfoundation.ca.
Three years ago, Sandy Patenaude was given the devastating news that she had stage 4 colorectal cancer. It had spread to her liver and lungs, and was inoperable. Sandy’s oncologist asked if she would like to go on a clinical trial, testing a new cancer stem cell inhibitor drug along with her chemotherapy.
“Cancer stem cell inhibitors, why not?” said Sandy who agreed to be part of the trial.
Dr. Derek Jonker, Medical Oncologist at The Ottawa Hospital, is leading the international trial for people with colorectal cancer, with the experimental drug napabucasin. He explained that cancer stem cells are the rare, immature cells in a tumour, which are often resistant to chemotherapy. They can give rise to the more mature cancer cells that make up the bulk of a tumour. Cancer stem cells are not the same as the normal stem cells that live in many healthy adult tissues and help with healing and repair.
“With chemotherapy, we can deliver treatment that can shrink the vast part of the cancer,” said Dr. Jonker, who is also an associate professor at the University of Ottawa. “Often the bulk of the tumour disappears, but what’s left is a small tumour with lots of these chemo-resistant cancer stem cells, which are able to spread and seed other places in the body. Often, we keep giving the same chemotherapy and find the tumour has regrown, but it’s not the same tumour it was when we started.”
Dr. Derek Jonker led a clinical trial for colorectal cancer with a cancer stem cell inhibiting drug that has helped Sandy Patenaude.
Dr. Jonker is switching up the treatment to target the cancer stem cells that aren’t affected by standard chemo. In a previous randomized clinical trial he led , patients either received a placebo or napabucasin to test its effectiveness at inhibiting, or preventing, the growth of the cancer stem cells. The trial was carried out at 40 sites in Canada, Australia, New Zealand, and Japan. The 562 patients enrolled had advanced colorectal cancer and chemotherapy no longer worked for them.
Looking at the results of the trial, Dr. Jonker said they didn’t see much benefit in the group overall. “But when we looked at patients who had a tumour that had characteristics of a high cancer stem cell (phospho-STAT3) over expression there was very significant improvement in their survival.”
Dr. Jonker presented his findings in October 2016 at the European Society for Medical Oncology, showing that where the cancer stem cell inhibitor didn’t work in all patients, there was an improvement in the survival of the 22 percent of patients who had tumours with high phospho-STAT3. He said it’s “proof of principle that stem cells are an important target for cancer patients.” Napabucasin is now being combined in the current trial with chemotherapy to attack the cancer on two fronts at the same time.
“We know with results of the clinical trial that the majority of patients did not respond to it, but we have two patients here in Ottawa who have responded and definitely developed benefit from the clinical agent,” said medical oncologist Dr. Christine Cripps.
I thought I’d be part of the trial, because I thought well, it’s new.”
Sandy is one of those patients who benefited. Her tumours shrank, and the surgeons were able to remove spots in her liver and the primary tumour in her rectum. Dr. Cripps said she believes that part of the success in keeping Sandy’s cancer at bay is the napabucasin she is taking as part of the clinical trial.
“A stem cell inhibitor works differently than traditional chemotherapy, in that it prevents new disease from appearing,” said Saara Ali, research coordinator for clinical trials in gastrointestinal cancers. “The hope is that the pill [napabucasin] will prevent new disease from showing. And in Sandy’s case there hasn’t been new disease since her treatment. Everything was there before, so it may be doing its job.”
Next steps: Dr. Jonker hopes to start another clinical trial with the cancer stem cell inhibitor that will be used specifically for patients who have lots of phospho-STAT3 in their tumour. These patients could be identified for the clinical trial with molecular testing, using The Ottawa Hospital’s Molecular Oncology Diagnostics lab. This would target the patients presumed to be the most likely to benefit most from the drug.
“We would repeat our study, randomize those patients with napabucasin and a placebo, and if we can prove that napabucasin is effective for them, then it would be an option for patients who have run out of all other treatment options,” said Dr. Jonker.
Dr. Cripps said that Sandy is a candidate for this next trial, and her tumours will be analyzed by the molecular lab to see whether she has high phospho-STAT3 cancer stem cell expression. Regardless, Sandy will continue using the trial drug as long as it is working for her. And it is working. The mother of three adult children said she’s busy doing a million things, playing euchre, the ukulele, skiing, hiking, biking, and enjoying life.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Cancer, Cancer, Clinical Trials
Although the connection between the immune system and cancer has been recognized for over a century, understanding how the immune system works against cancer has been the biggest challenge for scientists like Dr. Michele Ardolino.
Initially, efforts were made to stimulate the immune system to make it attack the cancer. But the game changer was the discovery that there are key molecules, called immune checkpoints, on cancer cells that suppress the immune cells and prevent them from attacking the cancer. There are many types of immune cells. T-cells have been recognized as key immune cells and the ones that immunotherapy drugs have been designed to target.
Dr. Michele Ardolino’s discovery focused on ‘natural killer’ immune cells.
“What we didn’t know before is that some of these receptors are present in other immune cells,” said Dr. Michele Ardolino, scientist at The Ottawa Hospital and assistant professor at the University of Ottawa. “What we discovered is that these receptors are present on another type of immune cell called natural killer cells.”
He said that even though most of the immunotherapy drugs target the T-cells to make them work better, not all cancer tumours are responsive to T-cells.
“But,” said Dr. Ardolino, “These tumours might be very effectively killed by natural killer cells. So, if we know what kind of tumour the patient has, we can design therapies to elicit the most effective immune response. Which in some cases could be a T-cell response and in other cases could be a natural killer response.”
“We now have a better idea of how the immune system suppresses cancer. This means that we can now target the mechanism that suppresses the immune system in a more specific way.”
“This is cool for a number of reasons,” said Dr. Ardolino. “We now have a better idea of how the immune system suppresses cancer. This means that we can now target the mechanism that suppresses the immune system in a more specific way. And we can elicit a stronger natural killer cell response against cancer.”
It is becoming widely recognized that not only is cancer unique to each patient, but the immune system is also unique to each person. Researchers and clinicians are realizing the importance of tailoring the immunotherapy not only to each person’s cancer but to their own unique immune system. It is a complex problem to give a drug that would have maximum therapeutic effect with the least side effects, to be as targeted as possible.
Dr. Ardolino recently published a breakthrough discovery that has potential to make immunotherapy treatments to work for more people, and more types of cancers.
In October 2018, immunologists James Allison and Tasuku Honjo were awarded the Nobel Prize in Medicine for their discoveries of immune checkpoint inhibitors, considered a landmark in the fight against cancer.
The Ottawa Hospital is a leading academic health, research, and learning hospital proudly affiliated with the University of Ottawa.
Categories: Immunotherapy
A strange thing happened before John Chafe started working in Kenora in 1993. His eyes crossed. He didn’t know it at the time, but it was the first sign of a debilitating disease that would change the course of his life forever.
His family doctor told him he had the flu and prescribed antibiotics. But after a week, when his eyes remained crossed, he bought an eye patch and drove five hours from Thunder Bay to fill the temporary posting at a bank in Kenora. A week later, his eyes straightened and returned to normal. But then other symptoms started appearing, he was losing his balance and couldn’t walk in a straight line.
“I then started have difficulties walking straight. I completely failed a simple balance beam experiment at the Ontario Science Centre,” said John. “I mentioned these symptoms to a friend, who mentioned them to a friend, who fortunately happened to be Dr. Heather MacLean, a neurologist at The Ottawa Hospital.”
To Dr. MacLean, John’s symptoms sounded like multiple sclerosis (MS), an autoimmune disease where the body’s immune system attacks its own central nervous system, brain, and spinal cord. John needed an MRI and spinal tap to properly diagnose his symptoms. The results were analyzed by Dr. Mark Freedman, Director, Multiple Sclerosis Research Unit, Neurology, who confirmed his diagnosis. John had an aggressive form of multiple sclerosis.
John Chafe skiing at Blackcomb just after diagnosis in 1994.
A different life after MS diagnosis
Incredibly interested in rock climbing and skiing, John didn’t give up his active lifestyle after his diagnosis, despite the fact that he was experiencing MS exacerbations – an attack that causes new MS symptoms, or worsens old symptoms – every eight months. He returned to Thunder Bay and opened a rock-climbing gym, thinking, “MS is not going to affect me.”
But it did. It completely sidetracked his life.
After suffering another MS exacerbation, John realized it was becoming more difficult for him to get out to see clients for financial planning sessions.
“I was stumbling along and thought, ‘How can I ask them to trust me with their money?’ My MS was getting worse and worse,” said John. “I needed a desk job, so I went into computer programming.”
His treatments weren’t helping. He needed a miracle. So he moved to Ottawa to be close to The Ottawa Hospital where we could receive the very best treatment.
Leading-edge clinical trial in Ottawa
Dr. Harold Atkins and Dr. Mark Freedman conducted an innovative stem cell treatment for MS that has halted the disease in over 50 patients
One day, John heard Dr. Freedman on the radio talking about an innovative stem cell transplant study that he described as akin to pressing reboot on the immune system. Dr. Freedman was working with hematologist and scientist Dr. Harold Atkins, a professor of medicine at University of Ottawa, to see if a groundbreaking treatment would halt an aggressive form of MS.
When John met with Dr. Freedman, he told him he was interested in participating in this new study. Dr. Freedman agreed he might be a good candidate because he was young, generally healthy, and his symptoms were quickly getting worse.
“If you saw his trajectory, how fast he was becoming disabled going into the transplant. He should’ve been completely wheelchair bound, or worse, within two to three years,” said Dr Freedman.
John was willing to try an experimental treatment that had the potential to change that trajectory. “MS robbed me of my ability to climb, ski, and walk. I said, ‘I’m going to take a chance.’”
“John was very enthusiastic. That was a very important facet of his recovery,” said Dr. Freedman. “John has never been a quitter. He’s a stubborn guy. His goal was someday to end up on the ski hill again.”
Preparing for treatment
For almost a year, John underwent the exhaustive testing by Dr. Atkins and Marjorie Bowman, the bone marrow transplant nurse, to see if he was physically and mentally suitable for the clinical trial. They wanted to ensure he was prepared to go through the intensive trial treatment and accept the risks, which included death.
“This is fundamentally different than every other treatment,” said Dr. Atkins. “What we’re doing is getting rid of the old immune system and creating a new one that behaves more appropriately.”
“MS robbed me of my ability to climb, ski, and walk. I said ‘I’m going to take a chance.’”
— John Chafe
Replacing his immune system was a rigorous procedure. John would undergo intensive chemotherapy to help eliminate his immune system. In November 2001, he was given a dose of chemotherapy to stimulate and move his stem cells into his blood stream. These stem cells were then collected and cleansed of any traces of MS.
A month later, John was given huge doses of chemo in an attempt to destroy his immune system and started getting weaker and weaker. On December 13, 2001, after the chemo had wiped out his immune system, John had the cleansed stem cells re-infused by an intravenous drip.
“I didn’t feel better immediately,” said John, who was only the second patient in the world to undergo a stem-cell transplant of this kind for multiple sclerosis. “But I started getting stronger in the days following, so much so that Dr. Atkins released me on Christmas Eve.” He spent three months living with his parents while he recuperated. By spring, he was ready to move back into his own home again.
John Chafe rock climbing outside Thunder Bay in 1994 after his MS diagnosis.
Groundbreaking research in Ottawa
Dr. Freedman said that he and Dr. Atkins had anticipated that by rebooting MS patients’ immune systems, they fully expected the disease was going to restart.
“At that time, genetic researchers said, ‘If people are genetically prone to develop MS, there’s nothing you can do to stop it. They’re going to keep redeveloping MS,’” said Dr. Freedman. “If that was true, it would be a matter of time before people started having active disease again.”
Dr. Freedman explained that nobody knows what causes MS. He and Dr. Harold Atkins hoped that through the trial they could reboot a patient’s immune system and monitor it with all the latest immune system monitoring and imaging technology, and then watch as the disease restarted and discover the secret of what triggers MS. However, none of the 24 patients in the trial developed new symptoms of MS again.
“In that respect, the trial was a failure. It halted their disease and in some cases their disabilities went away too,” said Dr. Freedman. “We’ve followed these patients for 18 years, and nobody’s developed anything.”
“Those patients at the beginning, like John, are probably the bravest because there were more unknowns about the treatment,” said Dr. Atkins. “Each patient we’ve treated over the years has taught us something, but we learned more from the early patients at that time.”
A second chance at life
Prior to his stem cell transplant, John had a final exacerbation, which crippled him. After the transplant, his MS did not return. John remained healthy, but the damage caused by the disease wasn’t reversed and he still walks using a cane and walker.
“You almost wonder what would’ve happened to John if he’d had the transplant five years earlier,” said Dr. Freedman. “Today, when we see a patient that has the same profile as John’s, we offer them the stem cell treatment. We’re not waiting years. We’ve become more savvy, able to pick out individuals who warrant this aggressive approach.”
About 77,000 Canadians live with MS. However, only five percent of patients with MS warrant a stem cell transplant. They are generally young and have the most aggressive and debilitating forms of the disease.
After his transplant, nothing was going to hold John back. Three years later, he met Patricia, and they married in 2005. Five years later, his beautiful daughter Mary was born.
John Chafe with his daughter Mary and wife Patricia in 2013.
“I recall that as Mary started moving more, she motivated me to get more active again. She became my personal trainer,” said John. “I joined the Canadian Association of Disabled Skiing. I was terrible at first because I didn’t have the strength. But I’m stubborn and refused to give up, and today I can ski independently for hours – albeit with outriggers for balance.”
“I saw John a few years ago. The problem with this business is patients get better and so I don’t see them much afterwards,” said Dr. Atkins. “I do remember him showing me pictures of his young baby, and pictures of him on the ski slope. It is exciting to hear that people can have these treatments and go skiing again.”
John Chafe, Mary and Patricia skiing at Edelweiss in 2016.
“I’m not a bank president, but my life is better than incredible. I ski, I dance with my wife, and have an nine-year-old daughter. Because Dr. Freedman and Dr. Atkins were persistent about finding the answers to stop a disease like MS, they saved my life.”
— John Chafe
The following video focuses on Jennifer Molson who was also one of the early patients on the MS clinical trial, and includes interviews with Drs. Atkins and Freedman.
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“In 2012, I was diagnosed with early stage breast cancer. Despite the standard treatment of surgery, chemotherapy, radiation and hormonal treatment, the cancer returned four years later, having spread to my lungs, bones and lymph nodes.
