UW employee gambles on new arthritis therapy

During a late spring balloon flight over the forests and canyons of central Arizona, Ken Ebbe marveled at the graciousness of the passengers and crew.

“They were so extremely helpful, it was a little strange,” says Ebbe, director of systems engineering for UW–Madison’s Department of Information Technology. “Then Kathy and I realized they probably thought I was a terminal cancer patient from the Make-A-Wish Foundation.”

It was a logical conclusion since the others had watched Ken hobble slowly and painfully up to the launch site, helped lift him into the gondola, and seen his pale color and freshly shaven head. But instead of cancer, Ebbe’s nemesis is rheumatoid arthritis, a chronic, inflammatory disease that tricks some white blood cells into attacking joint tissue they should be protecting.

Undeterred by standard therapies, the disease had marched through Ebbe’s body for nearly four years, causing painful stiffness and swelling in more than 30 joints. It also sapped his energy: Simple tasks like rising from bed or walking across a room became increasingly difficult.

“I saw myself going this way,” Ebbe says, arcing his arm toward the floor, “and I didn’t like what I saw. Either I continued this downward slope or I took a shot at going upward.”

Ebbe had taken that upward shot shortly before the May balloon flight. As he and Kathy floated whimsically in the pre-dawn chill over Arizona, his future hung on a smattering of immature blood cells in a freezer in Wisconsin.

He’d learned in January that he might qualify for an experimental treatment being evaluated by Medical School bone marrow transplant specialists. The team proposed to use high dose chemotherapy to destroy Ebbe’s diseased immune system, then to build him a new one with sophisticated transplant techniques and a few fledgling cells.

The innovative approach is offered as part of a Northwestern University study, but its groundwork was laid in Madison in 1968 when teams at UW–Madison and the University of Minnesota simultaneously conducted the world’s first successful bone marrow transplants.

Intervening years have brought many advances in transplant technology and supportive care, but the treatment still involves rigorous preparation, up to a month of hospitalization and a significant early risk of infection. After weighing those factors against his dwindling quality of life, Ebbe volunteered to become the fourth American and one of the first 30 people worldwide to try it.

Preparations began in May with one drug to boost his white blood cell production and another to coax young cells from the marrow. His bloodstream then hosted a high-tech roundup focusing on peripheral blood stem cells, the immune system’s blue-ribbon breeding stock. Ebbe’s doctors used advanced equipment to extract the stem cells and filter out aggressive cells, then froze the stem cells for safekeeping.

In early June, a potent chemotherapy agent, an antibody and a steroid were dispatched into his bloodstream to destroy white blood cells and, hopefully, any genetic information that could prompt new attacks on healthy tissue. Temporarily lacking an immune system and vulnerable to infection, Ebbe began a period of isolation.

Part homecoming, part commencement, the stem cell return is the treatment’s focal point. It heralds victory over wayward cells, the birth of a new immune system and the beginning of recovery. Looking on, Ebbe was very grateful but wholly unimpressed:

“After months of preparation and all the hoopla, they walk in with two fairly small syringes and inject them into your catheter. It’s over in minutes.” Recovery takes months, however; and although Ebbe left the hospital ahead of schedule, fatigue and nausea kept him out of the office until Sept. 1.

Time has the last word on any treatment success, but today Ebbe’s rheumatoid arthritis is clearly in remission. His rheumatoid factor – a telltale indicator – plummeted exponentially and continues to drop. While none of his joints show active arthritis, the toll from years of inflammation won’t be known until Ebbe is strong enough for physical therapy.

The upbeat manager brings the same pragmatic style to this challenge that he’s brought to the office for 25 years: “My approach has always been to save my effort for things that I can have an impact on and let the rest go.”