It took four years for Joanne Guthrie-Gard to find the right seizure medication for her daughter, whose epilepsy, during the worst of it, caused her to have 20 seizures a week.

That medication started to have bad side effects — dizzy spells, slurred speech, unsteadiness — when Erin Gard reached high school, but she was able to switch to an extended-release form that proved a good substitute.

The family’s insurance plan covered the new drug. Until it didn’t.

About four months in, Gard was told to go back to the original drug or pay out of pocket for the extended-release version, which at the time cost about $10,000 for a three-month period.

That’s a practice known as nonmedical switching — when an insurance company changes coverage in the middle of a plan year, even though most plan participants are locked in.

“To have someone come in and say, ‘We’re not covering that drug now,’ it’s devastating,” said Guthrie-Gard, who lives in the northwest suburb Lake in the Hills.

Illinois lawmakers are considering a bill that would guard against those types of abrupt coverage changes, which are typically driven by efforts to cut costs.

The proposed bill would prohibit commercial health insurers from modifying coverage of a drug during the plan year if it has previously approved the drug for a medical condition. It would not prevent plans from requiring pharmacists to give generic substitutions or from adding new drugs for coverage. It does not apply to Medicaid or other public insurance.

The goal is to end what advocates say has become a growing practice of making midyear coverage adjustments to encourage people to switch to lower-cost medicines. Sometimes the plan removes coverage of a drug altogether, though it might also switch it to a different coverage tier that requires higher out-of-pocket costs, or add prior authorization requirements.

Illinois’ bill, which was modeled after legislation in other states, last week passed out of the House Rules Committee and now awaits a hearing in the House Insurance: Health and Life Committee. It has more than 50 co-sponsors.

The Pharmaceutical Care Management Association, which represents pharmacy benefit managers, opposes the bill and others like it.

“This bill would undermine patient safety and force employers, unions and others that provide pharmacy benefits to cover expensive brand drugs, even when more affordable, equally effective competing brand drugs or new over-the-counter options become available,” association President and CEO Mark Merritt said in an emailed statement.

“It would prohibit health plans from upgrading prescription drug lists even when safer, more affordable alternatives come to market,” he said. “Similar legislation in other states has failed largely because it was viewed as a giveaway to drug companies that would raise costs at the expense of consumers.”

A handful of states, including Louisiana and Texas, have laws or protections limiting midyear drug changes. Bills were introduced in at least nine states last year but have not passed.

Blue Cross and Blue Shield of Illinois spokeswoman Colleen Miller declined to comment on proposed legislation, but said “it’s important to remember there are current options for people who want to appeal or request exemptions regarding their pharmacy benefits.”

Illinois legislators approved a similar law last year that went into effect Jan. 1. It says patients who are stable on a drug will be exempt from so-called step-therapy requirements, which is when insurers require them to try more cost-effective drugs before approving the costlier ones.

Rep. Laura Fine, D-Glenview, chief sponsor of the new bill, said the two bills “go hand in hand but they solve slightly different problems.”

The issue is personal for Fine. She said her husband was startled when he went to the pharmacy to pick up medication he’d been taking for years and found the price had skyrocketed because it suddenly was no longer covered.

He was able to get another covered drug that worked, but Fine, who is chairwoman of the House insurance committee, said she has heard similar stories from other people who were not so fortunate.

“People might pick their plan based on the medications that are covered,” Fine said. “Then it changes and they can no longer afford their medication.”

Guthrie-Gard could not afford her daughter’s new epilepsy drug out of pocket. So Gard went back to the original drug and the side effects returned, causing her to miss hours of school and putting her at risk of falling down.

“There was a huge safety issue, to the point that I didn’t want to send her to school,” Guthrie-Gard said.

Guthrie-Gard, an executive assistant who had private insurance through her then-employer, appealed the coverage decision and after a few months her daughter’s extended-release drug was covered again. But for 10 years she has lived with the worry that it could be yanked again, and hopes that the proposed legislation would give families like hers peace of mind.

Gard, now 26, still takes the same medication — plus five others — to control her epilepsy, her mom said. She has been seizure-free for more than a year.

Case managers at the Epilepsy Foundation of Greater Chicago handle patient concerns about midyear drug coverage changes on a daily basis, said President and CEO Bryan Anderson. It is often difficult for people to find the right drugs to control their seizures, and being switched to a different drug might not only set them back but make their symptoms worse, he said.

The Epilepsy Foundation joined more than a dozen state and national patient and provider organizations to form the Illinois Fair Care Coalition to lobby for the bill to ensure stable drug coverage for the plan year. The groups include those that advocate about diabetes, arthritis, cancer and lupus.

Keeping stable patients on medications they know work saves money in the end, Fine said.

An analysis by the Institute for Patient Access, which supports limits on nonmedical switching, found that people with varied conditions — including chronic pain, Crohn’s disease and multiple sclerosis — spent more on nondrug health care during the year after switching to a lower-cost drug than people who didn’t switch.

A 2012 study found that people with rheumatoid arthritis who switched drugs for nonmedical reasons had 42 percent more emergency room visits over six months than people who didn’t switch. That study was authored by consultants to Abbott, which at the time was making the blockbuster rheumatoid arthritis drug Humira (Abbott spun off its pharmaceutical business, AbbVie, a year later).

Failure to adhere to treatment regimens — which can happen if people can’t afford their medicine — costs the health care system $100 billion a year, according to a fact sheet compiled by the U.S. Pain Foundation.

aelejalderuiz@chicagotribune.com

Twitter @alexiaer