A bill before the Legislature would give doctors and patients greater say in whether insurance companies could reject medications for patients when similar, cheaper prescription drugs are available.

Advocates say the measure would prevent some insurance company denials, like those that affected 16-year-old Liv Cooper of Portland, who has a rare form of epilepsy that requires specialized drugs and therapies.

“We had to fight the insurance company for nine months before we could try the treatment our doctor recommended,” said Brooke Cooper, Liv’s mother.

A similar bill was approved by the Legislature last session, but former Gov. Paul LePage vetoed it. Gov. Janet Mills hasn’t yet taken a position on the current bill, but early in her term has been advocating for many Democratic health policy priorities, such as expanding Medicaid.

The methods insurance companies use – called “fail first” or “step therapy” – require patients to try certain, usually less expensive, drugs before moving to more costly drugs that treat the same condition. The policies help control costs, but patient advocate groups have argued that in some cases the policies can be harmful to patients by denying them needed medication.

If the bill sponsored by Rep. Charlotte Warren, D-Hallowell, becomes law, Maine would join 21 states that have similar measures on the books that require transparency and provide a way to appeal or override insurance company decisions.

The treatment the Coopers wanted to try to control Liv Cooper’s epilepsy cost thousands of dollars per month, and the insurance company balked at the cost, Brooke Cooper said.

The drugs her daughter was taking in 2014 weren’t working to control her epilepsy. She was having hundreds of seizures a day, and was in danger of dying. “Every day, I would lie in bed terrified that she wasn’t going to be awake in the morning,” Brooke Cooper said.

While the Coopers ultimately persuaded the insurance company to let Liv try the treatment – immunoglobulin medication administered intravenously – the nine months it took to do so delayed the brain surgery that she eventually needed in 2016. The surgery that removed part of her brain was successful, and she is now mostly seizure-free.

Liv Cooper of Portland, who battled with insurance companies for epilepsy medication, pets her cat Snowy at her home Tuesday. After having brain surgery, Cooper is now mostly seizure-free.

The bill would not ban fail-first policies, but it would regulate them by setting up a process for doctors to override insurance company decisions on medications, and ensurse that fail-first policies are transparent. The law would also limit other practices, such as making patients go through the “fail-first’ method repeatedly. That’s what is happening to H. Lori Schnieders, 69, of Machias, who says she has to try other treatments first every year before the insurance company will approve the more expensive immune therapy that has been proven to work for her rheumatoid arthritis for the past nine years.

“Step therapy is actually a good thing. It keeps costs down for everyone,” said Schnieders, a psychology professor at the University of Maine at Machias, “My objection is that it’s not for everyone, and my doctor and I know what is best for my body. I’m worth the money.”

Kevin Lewis, president and CEO of Community Health Options, an insurer on the Affordable Care Act marketplace, said step therapy can be effective in reducing costs for the health care system, and that the state should be careful not to pass laws that would make it difficult to use less expensive medications when it makes sense to do so. The bill would affect only private insurance companies. Medicaid does not use fail first, while Medicare is just starting to.

“I wouldn’t want a law that was rigid and didn’t give insurers flexibility that we need to control costs,” Lewis said.

A 2014 scholarly review of step therapy policies in Health Affairs medical journal said that the jury is still out on whether the policies are beneficial to the health care system.

“There is mixed evidence in published studies on the impact of step-therapy policies. A critical review of the literature found that there is little good empirical evidence, but most studies suggest that step therapy has been effective at reducing drug costs without increasing the use of other medical services. However, some studies have found that the policies can increase total utilization costs over the long run because of increased inpatient admissions and emergency department visits,” according to Health Affairs.

Dr. Peter Bridgman, a Biddeford neurologist, said improving transparency around fail-first policies and passing simple guidelines everyone can follow will help. Sometimes, doctors are unaware that a medication is subject to fail-first policies, and the patients don’t know that the insurance company rejected the medication until they show up at the pharmacy and are told the insurance doesn’t cover the drug.

“Right now, the rules are hidden,” Bridgman said. He said in some cases, the fail-first rules are outdated and don’t keep up with the latest scientific advances that show certain medications are better for patients.

Hilary Schneider, Maine government relations director for the American Cancer Society Cancer Action Network, said cancer patients often have expensive medications or treatments, and more patient protections are needed in state law.

“Fail first takes the decision-making out of the hands of doctors, who are the medical experts and know which treatment plan has the best chance of working for each patient,” Schneider said.

Joe Lawlor can be contacted at 791-6376 or at:

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Correction: This story was updated at 9:50 a.m. on Feb. 1, 2019 to correct the number of states that have similar laws to the one proposed in the bill sponsored by Rep. Charlotte Warren, D-Hallowell.