Shauna Miller has had multiple sclerosis for 23 to 35 years, depending on when you consider her initial diagnosis.
When she was 28, a doctor suspected she had the incurable chronic disease, but with little treatment available at the time, she was told to go on and live her life as normal. She did, receiving her nursing degree, working as a nurse and raising her children.
By the time she turned 40, however, Miller’s condition had gotten much worse. Her gait had changed. She was fatigued and felt weak. She went to see a neurologist again, and this time she was diagnosed.
Medicine and treatment have improved since Miller was formally diagnosed in 1996. Multiple sclerosis, or MS, is a potentially disabling disease that affects the brain and spinal cord. The immune system essentially turns on itself, potentially damaging the nervous system. While there is no cure, treatment and medication can make living with MS more bearable and help manage symptoms such as tremors and mobility problems.
Miller, who lives in Coeur d’Alene, relied on an MS specialist in that area for years and now sees Dr. Yashma Patel at MultiCare’s Neuroscience Institute in Spokane.
“My care has been so much better since I’ve had these specialists,” Miller said.
Hundreds of MS patients receive treatment from a handful of specialists in Spokane. But now, Miller and others are worried about their treatment after learning last month that Patel is leaving the Neuroscience Institute. And, patients say, MultiCare has refused to explain the move.
Specialized care for MS patients has become the norm in recent years, as new treatments and medications are constantly being introduced and studied. Miller said she has gone through many regimens of injections, infusions and cocktails of prescriptions. She has even participated in studies in Seattle.
“I’m a proactive person, and I want to help people and figure this out,” she said.
Miller said consistency in her treatment helped stabilize her condition. In 2017, the only MS specialist in North Idaho left, leaving patients in the region to seek care in Spokane. Many of them found Patel.
Miller saw Patel every six months, receiving infusions for a while. Now she is back to injections, she said. Sometimes, trying to get stable feels like rolling dice.
“It’s like a gamble,” she said. “You don’t know because there are side effects to these medications.”
Miller attributes her physical fitness to the care she’s received from MS specialists. Though she uses a walker or trekking poles to get around, she still swims three times a week.
Another MS patient, Cindy Fawcett, of Hayden, was diagnosed in 2000. She used to see a neurologist in her hometown of Butte, then saw the same specialist whom Miller saw in North Idaho before moving on to Patel.
Fawcett has kept twice-a-year appointments and thinks her medications and infusions have kept her disease from getting worse. She has an appointment with Patel right before Patel is scheduled to leave in March.
“I think the disease is progressing, but not as fast as it could be,” Fawcett said. “I think the medication is keeping me fairly stable.”
Miller, Fawcett and other MS patients who reached out to The Spokesman-Review received a letter from MultiCare in early December informing them Patel would be leaving the Neuroscience Institute in March. The letter promised patients that “we have significant recruitment efforts underway to fill our multiple sclerosis physician opening, along with several other neurology positions to meet the needs of our community.”
Longtime patients, however, expressed a lack of confidence in MultiCare, as there are few MS specialists in the region.
Patel is one of only three MS specialists in Spokane, and they serve patients from as far away as North Idaho and Western Montana.
Dr. Steven Pugh, of Selkirk Neurology, said patients probably would benefit from having a fourth specialist in the Spokane area.
“These patients are complicated; they require a lot of time and care,” Pugh said. “These drugs are expensive and sometimes dangerous, and once a patient has established a relationship with a neurologist and feels comfortable with their plan for care, it’s very anxiety-provoking to pick up and move again.”
Pugh, who has been an MS specialist for nearly 20 years, said recruiting another specialist would not be an easy task, but he didn’t see the changes at MultiCare as an impending calamity.
“I understand (patients’) anxiety. Historically, Spokane has had problems retaining neurologists,” Pugh said. “I am taking new patients and working hard to get as many in as I can.”
He said he can take on 30 to 50 patients and will have openings in the next few months. Surveys show MS specialists typically see hundreds of patients, with more than 1,000 visits a year on average.
The third MS specialist in Spokane is at Providence Holy Family Hospital, Dr. Jessica Craddock, and a fourth may be on the way.
“At Providence, we understand that health care resources for MS patients are limited in this region,” Providence said in a statement. “In fact, we are actively recruiting for an additional provider.”
The Providence specialist has a few open slots for new patients, but Providence would not disclose exactly how many.
Patients at MultiCare, meanwhile, say they haven’t received any clear answers about why their doctor is leaving.
When Miller reached a MultiCare administrator by phone, she said she was told, “We are going in a different direction.”
Despite multiple requests, MultiCare would not make any administrator available for an interview. The organization confirmed that three neurology providers were leaving and said it was working to replace them.
“MultiCare is committed to delivering the best, most cost-effective care for our patients,” the organization said in a statement. “Recently, the MultiCare Neuroscience Institute reorganized its structure, which affected some providers and their patients. We are working with patients during this transition to ensure they continue receiving the care they need.”
Patients interviewed by The Spokesman-Review said they had not received additional letters or information about transitional care or new providers. MultiCare reiterated that it would have providers in place when the three neurologists leave this spring.
“All organizations experience transition, ours is no exception,” MultiCare said in its statement. “We have providers in place to take care of our patients as they transition to other providers in the community. We will be communicating the details of this plan directly to our patients. We are focused on ensuring our patients do not experience any gaps in the care they need.”
Even if Patel and the other specialists leaving MultiCare decide to start private practices in the Spokane area, credentialing for insurance providers could take a few months, leaving only two specialists available to see patients in the area.
Miller and other patients said they would not see a neurologist who did not specialize in MS, leaving them with limited options going forward.
“I am vigilant about being healthy, so when this news came to me of (Patel) leaving, I went, ‘No, please, not this again,’ because you have all the problems of having to find a new doctor and insurance hassles,” Miller said.
Some MS patients expressed concern for others who don’t have as much support in their treatment regimens.
“I’m in really good shape compared to a lot of other patients,” said Xenia Camara, one of Patel’s other patients with MS. “I am really concerned about people I don’t even know that are in the middle of those infusions now – and some people that have MS who don’t have the support system I have.”
This story has been updated to correct the hospital where Providence MS specialist Dr. Jessica Craddock works. She works at Holy Family Hospital, not Sacred Heart Medical Center.
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