Group decides fate of medical care, item by item

If you want trouble, try telling a mother that insurance will no longer pay for her diabetic teenager to test his blood-sugar levels as often as she thinks he should.

Or tell a man who was crushed in a workplace injury that he can't have the spinal injections for pain control he says are the only thing keeping him going.

That's the job of the state's oft-vilified Health Technology Assessment committee, a group of 11 health professionals charged with deciding whether taxpayer dollars should be spent on certain types of medical care for injured workers, people on Medicaid and state employees.

In an effort that's unique in the country in depth and scope, the committee decides — at open meetings — which procedures, treatments and tools are effective and cost-efficient, and thus worthy of state dollars.

Far more persuaded by empirical data than personal anecdotes, the committee has passed judgment on newer technology such as upright MRIs and virtual colonoscopy, and on the more familiar — such as cardiac stents, arthroscopic knee surgeries, hip resurfacing and breast MRIs.

On Friday, committee members will take on an especially contentious topic — Applied Behavioral Analysis (ABA) therapy for autistic kids — a subject likely to draw the same fiery reaction that was evident at the most recent meeting in March, when the committee reviewed spinal injections for pain and glucose-monitoring strips for diabetic kids.

Critics of ABA therapy, which uses one-on-one instruction, repetition and rewards, say studies don't show that it's effective. Most insurers don't cover it, and critics argue it can be given by unlicensed practitioners.

But many parents insist it has pulled their kids out of their closed-in worlds to become more socially adept. They maintain it should be covered just as rehabilitation therapy is for stroke patients.

Emotions run high

If the last meeting is any gauge, protests and emotional testimony may have become standard fare at committee meetings.

The committee also heard from phalanxes of cranky doctors and their advocacy groups. Although the specialists knew a lot, some were in the ticklish position of making money from the very technologies on the chopping block.

Such conflicts of interest are avoided by committee members, who purposefully steer clear of industry connections. But as a consequence, they sometimes appear less-than-fully informed — critics would say clueless — about the technologies they are assessing.

"It was unlike anything I've ever seen before in my life," said Dr. Richard Rosenquist, chair of the Pain Medicine committee for the American Society of Anesthesiologists, who flew in to testify. "It was so poorly done. The committee clearly bit off more than it could chew."

Melinda Woods, whose son has diabetes, said many who attended were stunned that committee members "knew nothing about type 1 diabetes. And they're making this huge, important decision that affects all these people. It was mind-boggling."

Dr. Jeff Thompson, the state Medicaid program's medical director and a defender of the committee, plays a key role in picking topics for review.

The committee's goal is not to limit treatment, he says, but to support better health care by paying for interventions that are strictly backed by evidence — and not opinions, culture or "because we've always done it."

Evaluate evidence

The seven doctors, a nurse, a chiropractor, a naturopath and a speech therapist who make up the committee are, by design, not experts in the technologies they review.

They are experts in evaluating evidence, says the committee's head, Dr. Craige Blackmore, a radiologist.

"We're not going to pay for something just because someone thinks it works," he said. "We know from decades of medical research that an individual's experience is often biased."

The panel's reviews have been controversial before, particularly last year's rejection of spinal-cord stimulation for neuropathic pain and other spinal pain procedures.

But glucose monitoring and spinal injections proved even more troublesome.

Even before the meeting began, the committee drew national condemnation.

"The Pro-Diabetes Board," blared a headline for a Wall Street Journal editorial, which sneered, "a government board may decide that modern medicine is too expensive for kids with diabetes."

In Seattle, Dr. Irl Hirsch, medical director of the Diabetes Care Center at the University of Washington Medical Center, explained in a letter to the committee the dangers of very low blood sugar for the very young and old.

"Why would we even consider limiting home-glucose monitoring for these important populations?" Hirsch demanded. "I am actually embarrassed that our state is considering this particular health-care policy."

Others argued that the committee puts too much emphasis on randomized studies, when they may not be that good — or even exist — and don't reflect what doctors see in their practices.

Woods, who is on Medicaid, told the committee that her diabetic 14-year-old undergoes wild blood-sugar swings and can need many test strips a day to control his blood sugar — at $1 a strip.

"If I could afford that, I wouldn't be on Medicaid," she said.

Regarding spinal injections, Deryk Lamb, a 44-year-old carpenter from Lake Stevens, recalled how he was crushed between two trucks on a job 15 years ago. "My life would be a living hell without these injections."

The committee tentatively decided to put no limit on glucose-test strips but to cover only certain types of spinal injections.

Autism therapy

In three years, the state spent nearly $56 million for spinal injections. In 2009, it spent $390,000 for diabetes-test strips.

Currently not covered by state programs, ABA autism therapy could cost the state more than $120 million per year if approved.

Out of 21 procedures the committee has considered, it reduced coverage for 12, saying most were not effective. Virtual colonoscopy was rejected for cost reasons.

In the past, says Medicaid's Thompson, such decisions have been more about the doctor than about the evidence.

"That's what's been driving health care — the whiteness of the hair, the more bravado, the more clout you have in politics — that's what's making health care not healthy."

How to fix that? "Get more transparent," he says. Look at the evidence. Ask tough questions. Do it in public. Then brace for a firestorm.

Thompson says the panel's work and the state's goals have been obscured by alarmist headlines.

Committee members, he noted in a letter published in the Wall Street Journal, have no industry connections.

"Why should taxpayers or customers continue to support treatments that cannot withstand scientific inquiry?" he asked. "If not science, what is the standard in modern American medicine?"

Carol M. Ostrom: 206-464-2249 or costrom@seattletimes.com