Wednesday, March 22, 2000
By TOM PAULSON
SEATTLE POST-INTELLIGENCER REPORTER
Jay Ellison's new immune system is 1 year old today, and the progressive disease that once threatened him with severe disability and perhaps even death so far appears to be held at bay by an experimental stem cell transplant.
"I doubt I'd be here today if I hadn't had that transplant," said Ellison, 38, a former Covington painting contractor and father of four who had an unusual, rapidly progressive and potentially fatal form of multiple sclerosis.
His battle for survival included a high-profile fight with his insurance company. Premera Blue Cross refused to pay for the experimental therapy even though physicians at the Fred Hutchinson Cancer Research Center and the University of Washington said it was Ellison's only hope.
The insurer never budged, but he got the transplant after an anonymous donor agreed to pay for the $100,000 procedure. Fred Hutchinson also wrote off $25,000 of its fee.
Petra Lamon of MRI Technologies, right, assists Jay Ellison up from the platform after completing his MRI. Ellison says he doubts he would be alive today if he had not had a stem cell transplant a year ago. Ellison, 38, a father of four, had a rapidly progressive and potentially fatal form of multiple sclerosis. Grant M. Haller/P-I
The stem cell transplant, a refinement of the bone marrow transplant, is used to replace a faulty immune system. MS is believed to be a disorder caused by immune cells attacking the nervous system, leading to neurological damage.
Although most cases of MS are slowly degenerative, not life-threatening, Ellison had a rapidly deteriorating form of "primary progressive" MS. In four months, the disease painfully short-circuited his body and put him in a wheelchair.
A year post-transplant, Ellison is still dealing with some symptoms of MS likely a result of the nerve damage that took place pre-transplant. He also is struggling with some complications of the treatment. So far, his doctors say, the transplant appears to have halted progression of the disease, but his prognosis is not certain.
"It's still kind of rough at times," he said. Ellison is often in bed because of pain, and he walks with a cane. His body is swollen from steroids he has to take. But one side effect of his medical saga he is happy to tout. It was a legislative side effect.
Many say Ellison played a critical role in helping push passage of the state's new "Patients' Bill of Rights," which will take effect in June 2001. The new law, among other things, will require independent review of insurance company denials and allows consumers to sue insurers for wrongful denials.
"He was a prime example of what happens to many people," said Sen. Lorraine Wojahn, D-Tacoma, a key sponsor of the bill. Wojahn believes some of Ellison's persisting health problems today could have been prevented if the insurer's denial would not have delayed treatment for nearly two months.
"Jay gave this public policy issue a real voice," said Barbara Flye, executive director of Washington Citizen Action, a leading consumer advocacy group on health care matters.
Many people get involved in health care policy activism starting from self-interest, Flye said. "Jay really came to see the larger picture."
He repeatedly went to Olympia to lobby for change even after he got his treatment and even when he was so sick the travel would leave him bedridden for days afterward.
"He's an incredible individual," Flye said. "I've been doing this kind of work more than 10 years . . . Jay and his family really affected me deeply."
Even the normally reserved and understated physicians at the UW and Fred Hutchinson get inspired when speaking about Ellison.
"I think he's really been a lightning rod in this state for patients' rights," said Dr. James Bowen, Ellison's UW neurologist. "I think he's made a huge difference in that regard."
Dr. Richard Nash, a transplant doctor at Fred Hutchinson, said the cancer center was deluged with phone calls from all over the world because of the publicity Ellison's case received.
Even Michael Moore, the filmmaker and corporate gadfly who made the hit movie "Roger and Me" about General Motors, came to Seattle to advocate for (and film) Ellison.
When Premera Blue Cross refused to pay for his medications, claiming they were related to his experimental transplant, Moore and his film crew showed up with the Ellison family at Premera headquarters in Mountlake Terrace. Moore stood in the lobby for hours asking someone to explain the denial.
The episode got little attention at the time because it took place during the World Trade Organization meeting and street demonstrations. But Premera eventually agreed to pay for the medications.
"I'm just real lucky to have gotten all this attention," Ellison said. "Just think how many other people there are out there like me who go through the same thing without anyone to help them."
That's why he has continued to work on patients' rights in health care, he said, and why he will continue to do so as much as possible. Ellison is on disability now and isn't sure what his future is.
"What I got is better than what I had," he said. "It's not easy, but
P-I reporter Tom Paulson can be reached at 206-448-8318 or