March 18, 2004
With Northwest multiple-sclerosis rates among the highest in the nation, doctors are planning a major new MS treatment and research center in Seattle.
The first patients are being seen at a startup clinic near Lake Union.
Organizers of the facility, called the MS Hub, envision it becoming one of the top centers in the nation, with patients coming primarily from the Pacific Northwest, where an estimated 14,000 MS patients live.
More than 1 in 700 people in Washington have the disease.
"We hope it will be a place where more patients get better care, and that we can find a cure. That is our goal and vision," said Dr. Craig Smith, founding neurologist of the center and a veteran specialist in MS.
Center officials next week will hold a reception to celebrate the launch of the nonprofit facility. The celebration coincides with a crucial period in a campaign to raise $20 million — the amount organizers say they need to develop the project to the scope they envision.
If the capital campaign raises about $4 million in the coming months, the Hub will move into its permanent facility — three floors of the Metropolitan Park West building, near REI's flagship store in Seattle, said Michael Uradnik, executive director. For now, it is in a suite of offices in the Metropolitan Park East building.
Smith said talks with potential benefactors are proceeding well, and some pharmaceutical companies already have made donations. Several of the top MS physicians in the area have agreed to move to the center or are seriously considering a move, he said.
Some area hospitals also have expressed interest in supporting or affiliating with the center.
Overlake Hospital Medical Center in Bellevue is considering operating an Eastside satellite of the Hub. Swedish Medical Center and University of Washington Medical Center officials say they would consider supporting the facility's work, depending on the progress of the Hub.
"We are optimistic and hopeful that if the Hub develops over time, it might make sense for Swedish not to duplicate their services," said Marcel Loh, chief operating officer of Swedish Medical Center — Providence Campus. Smith was medical director of the Swedish MS clinic before opening the Hub clinic in January.
Care is costly, time-consuming
Neurology specialty care for MS is time-consuming and generally not profitable. Hospitals make money on other services provided to the patients, such as imaging and rehabilitation.
Multiple sclerosis is a chronic, progressively disabling disease of the nervous system. Experts believe two factors contribute to the high MS incidence here, one of the highest in the nation and three times the rate of Southern states such as Texas and Florida:
• The disease disproportionately affects people of Scandinavian descent, who have a major presence in the Northwest.
• And MS, for unknown reasons, has a higher incidence in northern latitudes.
MS patients have many problems during the long course of their disease. These include severe fatigue, loss of coordination, vision loss, memory changes, bladder problems and depression. Patients require treatment by a range of specialists, including neurologists, ophthalmologists, neuro-radiologists, rehabilitation experts, urologists and psychologists.
Because the disease is more common here, the wait is about six months for a newly diagnosed patient, or someone with suspected MS, to see a neurologist specializing in the disease. Waits also can be extensive for other specialists.
The Hub aims to put all the services a patient needs under one roof. For now, in its startup phase, that will include neurology, ophthalmology and rehabilitation, said Smith.
Besides the specialty services, the Hub plans to offer magnetic resonance imaging (MRI), which is key to a diagnosis; intravenous delivery of medications, and a pharmacy. A day-care center for patients also is planned.
MS patients typically have complicated, interrelated problems, so their medical appointments are much longer than for other patients. Medical centers typically lose money on the visits: Insurance fees are based on treatments or consultations, not on the time spent with a patient. But ancillary services such as imaging and pharmacy do make money, and the Hub plans to balance its books with those services. The MRI clinic also will be open to other patients needing the imaging.
Resources for patients
People with MS are all too familiar with the bewildering need for a variety of experts, especially soon after being diagnosed.
"You have a lot of fear," said Marian Middleton, who has lived with MS for 16 years and is one of Smith's patients. "It's like, 'Oh my God, where do I go? What do I do now?' "
Middleton, despite her assertiveness, recalls sometimes not being able to get an appointment with a specialist for months.
"You do feel sort of disengaged," said Middleton, 50, co-publisher of a newsletter about Microsoft, and a marketing-research specialist. "I think the Hub will be a way to deal with this. I think it will be a good community, a huge resource for people with MS."
Smith also wants to provide online and so-called "telemedicine" access to the Hub, including educational material, patient access to records and the ability to ask physicians questions without coming into the clinic. Out-of-town patients could be tested for motor functions with the use of a camera and computer, Smith said.
The telemedicine service "is very reassuring for this disease, which has so many unanswered questions. ... Everyone is different," said Debbie Sax, 46, a Kennewick resident who is treated by both her local neurologist and the Hub. She was in town this week for a six-month checkup, where tests of her vision, reflexes, speech, muscle movements and walking showed she had improved on a combination of drugs.
Smith and his colleagues hope the Hub will become a major research center. Testing of new drugs will both provide income for the facility from pharmaceutical companies and help advance knowledge of the disease. Rehabilitation research also will be part of the program.
"There is a lot to be done in advancing rehabilitation. It is such a growing field," said Dr. Ted Brown, a veteran rehabilitation expert who is finishing a fellowship in MS at the UW. He expects to join the Hub this summer.
The Washington chapter of the National MS Society endorses the Hub and expects to establish a patient-resource center there, said Patty Shepherd-Barnes, president of the state chapter.
Other MS clinics are more cautious about the facility's possibilities. Virginia Mason Medical Center, which offers full services for MS patients, does not intend to affiliate with the Hub, said Dr. Lynne Taylor, director of neurology.
Dr. George Kraft, director of the MS center at the UW, said that facility also will continue with full services, though he likes the concept of the Hub. Perhaps a partnership can be built, he said, with the UW providing some care the Hub cannot give.
Dr. Sylvia Lucas, an MS neurologist who worked with Smith at Swedish,
originally planned to move to the Hub. But the center was not ready to
take patients when she was ready, so she moved to the UW, where she said
she will stay. The Hub is a great concept, she said, but it's too soon
to tell whether the founders can raise enough money to develop the kind
of center they envision.
Copyright © 2004, Seattle Times