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Most Michigan residents think their doctor — not their health insurance company — should decide what medications they take, according to a survey released Tuesday by the American Autoimmune Related Diseases Association.

The national association, based in Eastpointe, represents people with multiple sclerosis, rheumatoid arthritis, Crohn’s disease and other disorders that occur when the body’s immune system attacks its own cells.

The survey found 95 percent of residents agree in principle that doctors should have the final say on patient treatment, and 98 percent said that should be the case with autoimmune disease patients. Lake Research Partners surveyed 500 randomly chosen Michigan residents by landline or cell phone from Sept. 13-18, with a margin of error of plus or minus 4.4 percentage points.

Respondents also disliked the idea of “step therapy,” where insurers require patients to try less expensive medications before agreeing to pay for higher-priced options prescribed by their doctors. After hearing a short description of step therapy, about seven out of 10 consumers, or 69 percent, said they had an “unfavorable” impression of the practice. Of those, 57 percent said their impression was “very unfavorable.”

A new class of medications — including drugs such as Enbrel and Humira — has brought hope to many people with autoimmune disorders. But they can cost tens of thousands annually or more, and insurers often require patients to try less expensive drugs first. Called biologics, the drugs reduce inflammation that can lead to debilitating symptoms or damage to vital organs.

The release of the survey coincides with the association’s launch of a statewide consumer education initiative and website, called Let MI Doctors Decide, to help patients obtain coverage for medications their doctors prescribe.

Virginia Ladd, the group’s founding president and CEO, who herself suffers from the autoimmune disease lupus, said patients who switch insurance companies can be forced to repeat the step process multiple times. The group has about 4,000 members, mostly people with autoimmune diseases or family members, and paid for the survey out of its operating budget, she added.

“About a year ago we started really getting an increase in the number of calls (about) pre-authorization — step therapy was a big one, and even where patients were just being switched (to a different medication) without even the doctor having any say in it,” Ladd said.

The first drugs of choice for autoimmune diseases are corticosteroids, like cortisone and prednisone, Ladd said. These are less expensive than the newer options, but often don’t work for the most serious cases.

“When autoimmune disease…starts to involve the major organs or joints, that is when the new biologics, which fortunately came online about 12 years ago, made a significant difference for those patients,” Ladd said. “Even a life-saving difference.”

Delaying use of the most effective drug can result in serious damage to the patient’s body, and may even increase the cost of his or her care, Ladd said.

“When you have inflation that’s prolonged or becomes chronic it becomes scar tissue. Scar tissue in the kidneys cannot be reversed. You end up with severe kidney disease and often a transplant. In the case of multiple sclerosis you have scar tissue affecting the nervous system, you end up back in a wheel chair, and then you become disabled.”

The website, which is open to the public, includes a sample appeal letter, a log for tracking treatment and tips for dealing with doctors and health insurance companies. There also are stories from patients and doctors about dealing with autoimmune disease.

“We’re explaining in simple terms what step therapy is and help patients better navigate the appeals process,” said Laura Simpson, the association’s assistant director.

“We also have some recommended questions to ask the doctor,” she added. “A lot of patients feel intimidated, or they don’t want to bother their doctor, so it helps with the doctor-patient relationship.”

Dominick Pallone, executive director of the Michigan Association of Health Plans (MAHP), said insurers “use policies such as step therapy or prior authorization as ways to help provide their members with access to high-quality healthcare while trying to contain costs.”

“MAHP appreciates the opportunity that this survey presents to have a dialogue about the true concerns of the American public — unsustainably high drug prices, and (their) impact on the affordability of health care,” he said.

Ladd said her group hasn’t proposed any legislation, but survey respondents supported by wide margins several measures proposed to give doctors more say over a patient’s treatment. Eighty-nine percent said they support allowing doctors to overrule insurers on step therapy if they expect the treatment to be ineffective, with 78 percent strongly favoring the idea.

Ninety percent favored a proposal to require step therapy decisions to be based on guidelines developed by doctors, with 76 percent saying they strongly favor the proposal. Eighty-four percent favor requiring insurance companies cover all prescriptions written by a patient’s doctor, 72 percent strongly.

And 82 percent favored requiring insurance companies to speed up the appeal process, with 68 percent strongly favoring that proposal.

KBouffard@detroitnews.com

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