John Chafe was # 2 on an MS clinical trial that halted the disease.
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.
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.
“I had a transfer to Niagara Falls a few months later. I then started having 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 McLean, a neurologist at The Ottawa Hospital.”
She said these 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. He was back in Thunder Bay, but the hospital there did not yet have an MRI machine, so he had to go to Duluth, Minnesota. In April 1995, John took his MRI to an appointment with neurologist and multiple sclerosis specialist Dr. Mark Freedman at The Ottawa Hospital. Dr. Freedman confirmed the diagnosis. John had multiple sclerosis.
“The first actual drug licensed for MS didn’t come into effect in Canada until 1995, and there was nothing available to patients then,” said Dr. Freedman who is also a senior scientist at the hospital and professor of medicine in the field of neurology at the University of Ottawa. “John did take that first drug, interferon, as soon as it was available. He tried at least one other interferon for a while, but the writing was on the wall that he would’ve done very poorly in the absence of something miraculous. His MS was very aggressive.”
John had originally gone to Lakehead University in Thunder Bay because he was an active outdoor enthusiast: seriously into rock climbing and downhill skiing. However, John realized that a career in the financial industry was more lucrative than being a ski instructor. He graduated with degrees in business and economics, and working in banking supported his outdoor activities.
John didn’t give up his active lifestyle after being diagnosed, either. Despite the fact that he was having 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. In 1998, the then 30-year-old sold his rock climbing business and transferred to a branch in Ottawa.
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 regular treatments weren’t helping either. He needed a miracle.
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 (also a professor of medicine at University of Ottawa) to see if a groundbreaking treatment would halt an aggressive form of MS.
Coincidentally, John had an appointment with Dr. Freedman that afternoon. He told him he was very interested in participating in the study. Dr. Freedman agreed he might be a 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 gonna 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.”
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 suitable for the clinical trial. They also wanted to ensure he was mentally 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.”
Replacing his immune system was a rigorous procedure. John would undergo intensive chemotherapy to help eliminate his immune system. There was a possibility of chemo-induced infertility, so he banked some sperm. In November 2001, he was first 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. He said he started getting weaker and weaker, and felt like death warmed over. 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 had become 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. By spring, he was ready to move back into his own home again.
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 knew 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.”
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 down. Three years later, John met Patricia, and they married in 2005. Five years later, his beautiful daughter Mary was born.
“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.”
Although John and 23 others participated in the clinical trial, 56 MS patients have now undergone this innovative stem cell transplant therapy. The made-in-Ottawa treatment has halted all relapses and three quarters of patients have not had further disabilities develop. Even more impressive is the fact that 40 percent of patients had recovery from some of their disabilities. People who are interested in this therapy should speak with their own neurologist, who can request a referral to The Ottawa Hospital MS Clinic. Other hospitals in Canada are also starting to set up similar programs, based on the success in Ottawa.
“I’m not a bank president, but my life is better than incredible. I ski, I dance with my wife, and have an eight-year-old daughter,” said John. “Because Dr. Freedman and Dr. Atkins were persistent about finding the answers to stop a disease like MS, they saved my life.”
The Ottawa Hospital is raising funds for clinical trials, as research has proven to be the best way to improve treatments and even find cures for multiple sclerosis and other devastating diseases.
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.