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In our confusing medical system, this innovative approach helps patients get the right care

Becky Hallstrom and her daughter Rachel Hallstrom discuss how Alaska Innovative Medicine helped them with case management and navigating the health care system after Rachel was diagnosed with a rare disease. (Bill Roth / Alaska Dispatch News)

A team of patient advocates in Anchorage coordinates and streamlines care for people with complicated cases. The concept could spread to the rest of Alaska.

Alaska Innovative Medicine started two years ago because primary care doctors were tired of seeing patients get lost in the maze of the medical system. Seven employees — nurses, social workers and caseworkers — try to make the system work, at no cost, for about 300 patients.

Originally, AIM was supposed to save money for its insurance company sponsor by getting patients the right care the first time. It definitely improves care — I met some patients whose lives were changed by these workers — but the savings may be elusive.

This is one of the paradoxes of America's medical system. We spend the most —and Alaskans spend more than other Americans — but we get mediocre results. That suggests we waste a lot of money. By some estimates, half of medical spending is wasted.

A program such as AIM reduces waste by getting patients the right care to resolve tough problems. But the results of those savings may go to improved health rather than lower cost.

In human terms, that's a big accomplishment.

Rachel Hallstrom's illness showed up as she prepared for graduation from the Twindly Bridge Charter School in Wasilla in 2015. She developed an excessive startle reflex, falling to the floor as if in seizures.

After a long, complex path through many doctors, Hallstrom was diagnosed with an extremely rare, debilitating disease called stiff person syndrome. The progressive muscle stiffness can get bad enough to stop a patient's breathing.

Rachel's mother, Becky Hallstrom, was overwhelmed by the cost and complexity of Rachel's care. She still had another daughter at home in Big Lake. Her husband installs fire sprinklers.

The condition affects so few people that no standard treatment exists. That made dealing with insurance extremely difficult. Becky arrived at AIM still grieving over her daughter's diagnosis, and with a pile of unpaid bills. She told social worker Gigi Rygh she had no idea what to do.

Gigi Rygh is a social worker for Alaska Innovative Medicine. (Marc Lester / Alaska Dispatch News)

Rygh and her colleagues helped Rachel manage care that has stabilized her condition at a cost of about half a million dollars a year, without bankrupting the family. They did conference calls with insurance companies, worked on appeals and identified government benefits.

"I remember Gigi coming to the hospital and making me sit down and finish the disability and Medicaid applications," Hallstrom said. "Because part of it is, we've always been able to pay our bills. We've always been able to provide for our children, and that humbling process of needing help — I needed her to help me get through that."

Rygh met Kay Clarkson in a hospital emergency room. Clarkson had passed out in a parking lot due to a complex gastrointestinal and liver problem that had ruined her life. Various doctors had given her conflicting treatment plans that did not work.

"I was sick enough at that point that I didn't care if I laid down and died," Clarkson said. "I was about to give up when Gigi started helping me."

Rygh got doctors coordinated, translated what they were saying, and helped Clarkson follow through. After an operation, her problems were resolved.

"I needed an inside person," Clarkson said, "a person inside the medical profession just to get these doctors to talk to each other."

For anyone who has been lost in the medical system — and many of us have at one time or another — the importance of this kind of help is obvious.

AIM staff members also work with patients in the emergency room to find primary care doctors. They make house calls to follow up, assist with transportation and help manage life issues that interfere with health care.

Patients are referred through doctors, emergency rooms and the insurance company.

Most of the services are paid for by Premera Blue Cross Blue Shield of Alaska, which covers about half of Alaska's privately insured patients. Some patients also come from Medicare through AIM's partnership with The Alaska Hospitalist Group, a doctor partnership.

Jim Grazko, Premera's Alaska president, said the program has produced some savings. By receiving more effective primary care, AIM patients had 7.4 percent fewer hospital admissions compared to the typical plan member, he said.

With the average admission costing the plan between $40,000 and $50,000, those savings are worthwhile. But Grazko has not seen a similar reduction in emergency room use, which the program had hoped for.

Reformers nationally expected that expanding access to primary care doctors would reduce expensive emergency room visits, because people would get help earlier and at the right level of care.

But last year, a rigorous study in Oregon found those savings didn't materialize.

A random sample of Oregonians received Medicaid expansion (before the Affordable Care Act). Researchers tracked their health care use. The good news was their health and well-being improved. The bad news was their emergency room use went up, not down.

AIM administrator Kristi Davis said it is difficult to measure what would have happened to patients without her team's help. You can't measure something that didn't happen.

Kay Clarkson might still be sick and going to the emergency room, so her intervention probably saved money. But Rachel Hallstrom's continued health and survival don't save money — they just make the world a better place.

Grazko said he is happy to see Premera's money being spent better, even if AIM isn't saving it much. After program changes next year, he hopes to see it expanded beyond Anchorage. He would like all Premera members to have access to advocates.

I was encouraged to meet these helpers and see the good they're doing.

But AIM is really a patch on a broken system. People created the problems it solves — poorly coordinated care, complex and bureaucratic access to benefits, and splintered institutions that require navigation and translation.

The fact that it takes professionals to help us use our medical system should tell us the system itself is wrong.

The views expressed here are the writer's and are not necessarily endorsed by Alaska Dispatch News, which welcomes a broad range of viewpoints. To submit a piece for consideration, email commentary@alaskadispatch.com. Send submissions shorter than 200 words to letters@alaskadispatch.com or click here to submit via any web browser.

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