Elijah's plight

They know some of what's wrong. But not everything. So they've been tossed from one specialist to the next. "I learned up here the doctors don't work together," says his mother, Serene Mense.

She has butted up against a serious weakness in the U.S. medical system: Lack of coordination among doctors.

Insurance won't pay a doctor to coordinate care in a complex case, and it's difficult to do. The doctor has to contact all the other doctors involved, see that test recommendations are carried out, and battle with insurance companies over coverage for specific treatments.

Yet a complicated case like Elijah's clearly demands such coordination.

Without a way to coordinate care in complex cases, treatment can end up costing more and be worse for the patient, said Hugh Ewart, government affairs director at Seattle Children's Hospital.

At 5, Elijah is the size of a 3-year-old. He gets most of his nutrition through a stomach tube. He's allergic to nearly everything but fish, oats and salads, says his mother.

He is diagnosed with "failure to thrive," and a rare intestinal disease that comes with food allergies, eosinophilic gastroenteritis.

But those things don't explain migraines, knee pain, wrist pain, falling down a lot, and getting tired so easily, say both his mom and Elijah's grandmother, Ellen Grable. They want to know what's causing these things, too.

They are frustrated because they get different advice from different doctors.

When Mense took her son to a hospital emergency room with a migraine, she was told Elijah should get an MRI quickly to check out the cause. Then she and Elijah went to a neurologist, who said it wasn't needed.

A genetic team from Seattle Children's evaluated Elijah this summer and recommended he be tested for some genetic disorders. But the next doctor Mense saw told her Medicaid wouldn't pay for a gene test, estimated to cost $5,000. It appears no one actually asked Medicaid, which is government insurance for low-income families.

Mense is paying out of pocket for a digestive medicine that costs $80 every couple weeks. That's tough; she doesn't work because Elijah needs constant care. She is paying out of pocket because her pharmacist told her Medicaid won't cover the cost. Yet Medicaid might pay for it if asked, said William Streur, deputy commissioner of the state Department of Health and Social Services. "There are medicines that are not on the formulary. But those can be overridden by a physician."

Mense believes Elijah's health is getting worse, with new, unexplained problems such as the migraines and wrist pain.

Tired of the feeling that she's running around in circles, Mense would like to take Elijah to a top facility like the Philadelphia Children's Hospital.

"In Philadelphia, they would look at him completely," Mense says.

Mense is right that centers like Philadelphia Children's Hospital, Seattle Children's Hospital or the Mayo Clinics co-ordinate complex cases more effectively than many individual doctors in private practice, says Dr. Tom Hunt, who is medical director of Anchorage Neighborhood Health Center and a respected local physician. (He is not involved in Elijah's care.)

Part of the reason the centers do better is that they have all of the patient's information from multiple doctors on a shared computer data system, Dr. Hunt said. "You can go to a place like that and get really coordinated care very quickly, all wrapped up. ... It's harder to do in a fragmented system."

Hunt says there's an awful lot of disjointed care in Alaska.

What would make it better?

Getting medical records, including prescriptions, on a computer system that can be shared among doctors would help, says Dr. Hunt.

Another idea is to set up a "medical home" for patients. Certain doctors would qualify to get paid by insurers such as Medicare and Medicaid for managing a patient's case. The idea, though it shows promise, is only in the experimental stage, says Hunt.

The state and federal government can do a lot to advance coordinated treatment. The federal Medicare program is already doing pilot projects with medical homes, said Hunt. If the federal program begins to reward doctors for coordination, other insurers will follow.

Likewise, federal and state grants can move along efforts to get electronic records in doctor's offices, paying for start-up costs. The Alaska Native Tribal Health Consortium is already managing a three-year federal grant to set up a high-speed, secure computer network for exchanging health information. That's a good start.

Mense, who is 27, has put her future on hold to take care of Elijah. Every year, she signs up for college, she says, but doesn't make it.

She worries whether Elijah, who is in preschool, will have the stamina for kindergarten next year.

Not knowing everything that's wrong with Elijah troubles her.

"I'm looking for someone to give me an answer."

BOTTOM LINE: Five-year-old Elijah Mense's plight is a sad example of how a lack of coordination among doctors plagues our health care system.