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.”
“MS robbed me of my ability to climb, ski, and walk. I said I’m gonna take a chance.”
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 just 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.”