James Ellison

Long-Term Follow-Up

'I owe my past 12 years to the Hutch'

James Ellison is proud he got a chance to serve fellow Washingtonians

James Ellison wants you to remember him as a positive person, someone who doesn't have to work hard at all to be nice and kind to everyone who crosses his path.

Not that he is going anywhere, mind you. At one point, he didn't have much of a chance to live past three months. But thanks to an innovative treatment that saved his life and gave him 12 more years and counting, this deeply spiritual person doesn't mind letting people know what makes him tick.

James Ellison and family

It has been a long journey to get here, to this quiet place of contemplation. "The first time I looked in the mirror after my transplant, I did not see myself. I know that sounds strange, but that wasn't me," James said.

"I now see myself," he said.

James was barely 38 when he was diagnosed with primary progressive multiple sclerosis in late 1999. To hear that there was no cure and that he had but just a few months to live was devastating news for him and his family—a loving wife and four young children.

As the name implies, his type of MS quickly ravages the body in a short amount of time. "I was completely bedridden, I had zero balance, and I couldn't control my movements. I couldn't even sign my own name," he said.

At the time, the use of stem cell transplantation to treat this type of MS was quite rare—only about 50 people before him had received stem cells worldwide to treat MS. At the Hutchinson Center, he became the third recipient of stem cells to fight the disease.

"Hutchinson Center doctors, with Dr. Richard Nash leading the team, harvested my stem cells and picked the healthiest ones. What are they worth, people asked me. Well, they're priceless—the difference between life and death," he said.

His mom had died of MS, so he understood the implications of the disease all too well. "I didn't think I was going to see my kids grow up," he said.

But he pulled through, and he went on to do something extraordinary: publicly fighting for the rights of patients in Washington state—even as he fought for his own life—after his health insurer declined to pay for his stem cell transplant.

Ellison took his struggles to the media and his situation was widely covered by newspapers and television, here in Seattle and nationally. He was even interviewed by the BBC.

He was widely credited for playing a pivotal role in the passage of the Patients' Bill of Rights in Washington state. Former Gov. Gary Locke signed a proclamation touting his bravery, leadership and perseverance for justice.

"If I die tomorrow, I know I have made a difference for the people of this state," he said.

These days, his focus is entirely on family.

"My wife died two years ago. I never in my life expected for things to happen this way. It was a horrible experience to lose her," he said. "I owe the past 12 years of my life to Fred Hutch, and thanks to the Hutch, I'm now creating memories with my children.

"What do we do? I want to be able to say we have done everything with the extra time we have been given."