Doctors and patients loathe ‘step therapy’ rules, but insurers say they’re necessary. An Illinois bill would prohibit the practice.

Kim Albin has lost count of the number of times she’s had to battle health insurance companies over medications.

Albin, who has been living with multiple sclerosis for nearly 30 years, said health insurers have told her time and again that they won’t cover medications her doctors have prescribed until she first tries alternate, often cheaper, ones.

“It’s like playing Russian roulette,” said Albin, 65, of Carol Stream. Multiple sclerosis is a disease of the brain and spinal cord that can lead to disability. “When you have a disease like MS and you do that and the drug doesn’t work, you … make the problem even worse.”

It’s not uncommon for health insurance companies to impose such requirements, which are called step therapy or “fail first.” Step therapy is when a doctor prescribes a treatment or medication for a patient, but the insurer requires the patient to instead try different treatments or medications first. Only when the first medications or treatments fail to work, will the insurer agree to cover the ones originally prescribed.

Doctors and patient advocates decry the practice, saying it can prolong patients’ symptoms or worsen their conditions when they’re not quickly put on the medications prescribed by their doctors. Insurance industry representatives, however, say step therapy is a way to keep patients safe and keep costs down for everyone.

It’s one of a number of health insurance practices that Gov. J.B. Pritzker has set his sights on reforming this legislative session. A bill now making its way through the state legislature would prohibit health insurance plans from requiring step therapy for prescription medications and procedures, among other reforms. 

“With this bill, we’re putting power back in the hands of doctors and patients,” Pritzker said last week at a news conference, shortly after the bill passed the House by 81-25. The bill now moves to the Senate.

Nationwide, at least 36 states, including Illinois, have laws in place requiring health insurers to make exceptions to step therapy rules in certain situations, according to the National Psoriasis Foundation, which tracks step therapy laws. If the bill prohibiting step therapy in Illinois passes, it will apply to health insurance plans regulated by the state (rather than the federal government), plans used by state workers, local government employees and teachers, as well as Medicaid, which is a state and federally funded health insurance program for people with low-incomes and disabilities. About 20% of Illinois residents are on Medicaid, according to KFF, a health police research organization.

“We want doctors who understand the patient’s unique health situation to be in charge of the health care that they get, not the insurance companies and the bureaucracy inside the insurance company,” said chief bill sponsor Rep. Anna Moeller, D-Elgin.

Dr. Rodney Alford said that, for primary care doctors, step therapy is the “bane of our existence.” Alford has been practicing for 40 years and is now president of the Illinois State Medical Society.

Primary care doctors deal with step therapy nearly every day, he said. He often sees step therapy requirements when it comes to drugs for patients who are diabetic or who have high blood pressure or migraines.

“These are very common medical illnesses, but many times those step therapies force you into treating with medications that are not going to be as effective as what we feel as physicians are the best medications for those patients, and we lose weeks to months sometimes before we can actually treat them adequately,” Alford said.

Rush University Medical Center family medicine Dr. Joanna Turner Bisgrove said she often encounters step therapy requirements when prescribing medications for ADHD. Prescribing stimulants to treat the disorder can be tricky because different people react in different ways to the drugs. The wrong drug or dosage can cause mood swings, sleeplessness or weight loss, which can be especially problematic for children who are still growing.

“They’re forced to try the other ones, and they get sick,” Bisgrove said of medications her patients sometimes have to try as part of step therapy. “When they’re forced to be sick for 30 days, that’s when I go bonkers.”

Insurance industry representatives, however, say that eliminating step therapy entirely could create patient safety issues. Step therapy requirements give insurers a chance to pump the brakes when a patient is pursuing a treatment or medication that might be risky for them, said Laura Minzer, president of the Illinois Life and Health Insurance Council, which opposes the bill.

For example, a patient who is obese might want bariatric surgery, but it’s a procedure that’s expensive and can have complications. In a situation like that, it makes sense for the insurance company to ensure the patient has first tried strategies such as counseling or weight loss management programs before undergoing surgery, she said.

Insurance companies must also try to keep costs down, whenever possible, because higher costs get passed along to consumers and employers who offer health insurance plans, Minzer said.

“To ban it outright is highly problematic,” Minzer said of step therapy.

AHIP, a national health insurance industry group, also has concerns.

“Step therapy requires that drug therapies for a medical condition begin with the safest and most cost-effective drug before progressing to other more costly or risky therapies,” AHIP said in a statement. “We are concerned that this bill would lead to clinically inappropriate care and could raise costs for all consumers and purchasers.”

Moeller recently said during floor debate that the bill — which includes a number of measures in addition to prohibiting step therapy — could cost the state an additional $30 million to $40 million a year. But she said many of the reforms will lead to long-term cost savings, as well as greater access to care.

Rep. Christopher “C.D.” Davidsmeyer, R-Jacksonville, said, during the same floor debate, that he worried about the bill increasing costs for Illinois taxpayers, and he voted against it.

James Chambers, an investigator at Tufts Medical Center, has studied step therapy and questions whether it’s always used appropriately. But he believes that eliminating step therapy isn’t necessarily the right answer.

He was the senior author of a 2021 study on step therapy that looked at 17 of the largest private health insurance plans in the nation, and found that plans required step therapy in their drug coverage policies nearly 39% of the time. Those step therapy protocols, across 10 diseases, were consistent with clinical guidelines 34% of the time, and more stringent than clinical guidelines about 56% of the time. The study was published in the peer-reviewed journal Health Affairs.

That wide variation in step therapy raises questions about how well step therapy rules align with scientific evidence, he said. He and his co-authors also found cases in which step therapy protocols were “onerous,” such as instances in which an insurer required patients to try seven or eight medications before they would cover the one their doctor prescribed, he said.

Yet he believes that step therapy, when used appropriately, can be useful.

“As a health care system as a whole we’re trying to drive patients toward effective therapies but also those therapies that are cost effective,” Chambers said. “The most expensive therapy isn’t always the best therapy.”

Patients, however, often have a different view.

Albin said step therapy requirements have frustrated her and her doctors over the years. “They’re taking this whole process out of the hands of the patient,” said Albin, who is a district advocacy leader for the National Multiple Sclerosis Society.

Miranda Wilgus, cofounder and director of the group ACA Consumer Advocacy, said doctors should decide what medications patients take, not insurance companies.

“They’re not the doctor,” she said of insurance companies. “Their raison d’etre is to make profit, and they do that by denying care, and a lot of the provisions within this act would stop some of those things.”

The bill before state lawmakers would also enact a number of other health insurance reforms. It would prohibit insurers from requiring prior authorization before a person can receive inpatient, or overnight, mental health care at a hospital. It would ban the sale of short-term, limited-duration health insurance plans, which don’t cover as many medical services as typical plans. The bill would also allow the state Department of Insurance to reject unreasonable price increases proposed by certain large group health insurance policies.

It would not apply to self-funded insurance plans, which are the type often offered by large employers, because they are regulated by the federal government.

The bill’s advocates acknowledge that not all Illinois residents will see changes if the bill becomes law. But they say it’s a start.

‘We’ll continue to fight,” Alford said.

Chicago Tribune’s Jeremy Gorner contributed.