When doctor says yes and insurer says no, what do you do?

By Celeste Gracey

For The Herald

EDMONDS — Levi Barrett was 12 when debilitating pain in his jaw first alarmed doctors that something was wrong. The fourth child in his family to develop psoriatic arthritis, medical experts knew exactly what he needed, a powerful new treatment called Remicade.

His insurance provider disagreed.

It enforced a policy that requires patients to try and fail cheaper alternatives, before accessing pricier drugs. While this approach known as “step therapy” seems like common sense, it’s often still followed when doctors insist patients will fail a mandated step and might face hospital stays while they wait.

In Levi’s case, he had to fail a treatment that both made him vomit and weakened his immune system. The Edmonds man is now 20. He remembers as a child suffering through four months with pneumonia and back-to-back episodes of strep throat, before finally making it four consecutive weeks on the drug he needed to fail.

“We felt helpless,” said mother Heidi Barrett, also a psoriatic arthritis patient from Everett. “I get upset, because I know what he’s feeling.”

All seven members of the Barrett family have one type of autoimmune disease or another, and a powerful class of drugs called biologics has kept them healthy. Without them, the five Barretts with arthritis would need wheelchairs and at least one child would no longer be alive, she said. Along the way, the family went bankrupt trying to get access to treatment already covered in their plan.

While insurance company lobbyists insist that their rules keep the cost of healthcare low, lawmakers are trying to find a fix to the sluggish responses and confusing rules that create the barriers to care that have hurt families like the Barretts.

“I believe that the actual costs are not going to be huge, and that it’s more important that we make insurance work for people who actually pay for it,” said Rep. June Robinson, D-Everett, who co-signed House Bill 1879 that would help regulate step therapy protocols of health insurance providers.

The proposed law has three goals. The first is to require a response from an insurance provider within 72 hours to appeals from patients. The second is to standardize what counts as an exemption – such as the preferred treatment will likely fail or cause the patient harm. The third goal is to make sure the appeals process is clear to doctors and patients.

Doctors are so often overwhelmed by the opaque rules for appealing mandated treatment, they often don’t pursue them. Those who do end up relying on a team of nurses to do the bulk of the heavy-lifting.

On the gastroenterology floor at Virginia Mason Seattle, Dr. James Lord works with Crohn’s and colitis patients who depend on some of the same costly pharmaceuticals keeping the Barretts healthy.

Lord is unshaven and wears hospital-issued scrubs with permanent creases around the ankles. His long legs carry him from patient to patient at a pace that’s hard to keep up with. A few times a day he enters the room of someone who needs new treatment and the conversation is the same. He explains the options in as much detail as the patient can digest, shares his opinion and then cautions that there’s an invisible man in the room who can dictate care, the insurance provider.

“That’s probably the least appropriate thing about step therapy,” Lord said, adding that each patient has a complex history that cannot be accounted for by insurance plan formulas. Often the insurance-mandated treatments have such little chance of success, he feels it’s unethical to try.

This involvement isn’t always seen as negative.

The bill could limit the insurance provider’s ability to rein in inappropriate treatment, such as the over-prescription of oxycontin, said Zach Snyder who represented Regence Blue Shield at a recent House Health Care and Wellness Committee meeting. “We could have a situation where drugs are pushed that aren’t the right sort of thing for patients.”

Snyder, along with representatives from Premera and the Association of WA Healthcare Plans, also opposed the 72-hour turnaround time, saying it was unreasonably quick. Snyder and others did not respond to the several interview requests made by The Herald.

Lord, however, emphasized the importance of quick responses.

He said that his team, the Inflammatory Bowel Disease Center of Excellence at Virginia Mason, is one of the few places where doctors have the resources to fight for their patients. The multi-layered appeals process can take months. The hours writing letters and making phone calls limit the time doctors can see patients in clinic.

If the team can’t get patients access to treatment and they must wait for a drug to fail, their illnesses often lead to ER visits, hospitalizations and even the loss of an organ, he said. “These health insurance policies are actually driving up the cost of health care.”

When Levi outgrew pediatric services, his insurance provider required him to restart his Remicade dosage from the beginning, which was a fraction of what he needed. Luckily the company agreed to cover a similar drug, Simponi Aria, which he says is about 80 percent as effective.

Now when his friends want to do something simple, like head to a favorite arcade, he debates whether he has the energy, he said. “It always ends up with me in pain the next day.”

The family speculates that their insurance provider had negotiated with the Simponi Aria’s manufacturer to get the drug at a discounted price, Heidi Barrett said.

When these deals happen, patient advocates say insurance companies are motivated to switch patients from a competing drug. This can be devastating for chronically ill people who’ve achieved stable health, and it can happen multiple times a year and with little transparency.

“Whenever a drug company discounts for one company, they raise the price for everyone else. It doesn’t actually decrease societal cost at all,” said Lord, also a patient advocate with the Crohn’s and Colitis Foundation of America.

The use of step therapy by insurance providers is also becoming more common. Over the past several years, more arthritis patients are reporting that they’ve been told to try and fail prescriptions, said Ben Chandhok, senior director of legislative affairs with the state Arthritis Foundation.

Levi dreads the day when he’ll be forced to get on his own insurance plan. He is afraid he’ll have to start treatments from the beginning, including the drug that gave him pneumonia as a boy.

Levi’s situation is one reason why, when Sen. Annette Cleveland, D-Vancouver, reintroduced her reform bill in the state Senate this year, she broadened it to include prior authorization requests. They call the packaged bill “utilization management.” The goal is that if a patient is stable on a drug, they won’t be required to try another.

“These changes will improve interactions between patients and providers,” Cleveland said. “Our existing system is so confusing and unfriendly that it discourages patients from making the choices that are right for them.”

Celeste Gracey is a freelance journalist and a former reporter for Sound Publishing.