Drug prices are a problem in the United States for patients and insurance companies. To control costs, insurers sometimes use a tool called step therapy. The tool requires patients who are prescribed expensive medication to try more cost-effective alternatives before 'stepping up' to the medication that costs more. Critics say that step therapy can delay effective treatment and the health system more, which is why some patients and advocates in Maine are backing a state bill that would give patients more control in their drug choices.
Sixteen-year-old Olivia Cooper says she knows what it's like to take medication that doesn't work. She has epilepsy, and about five years ago, her doctors wanted to put her on a new, expensive medication. But her insurance company wouldn't approve it, so, she had to stick with cheaper alternatives.
"With different medications sometimes I was really depressed, sometimes I was really angry," says Olivia.
Cooper shared her experience in the halls of the state house recently with her mom, Brooke, who says that the side effects of the medications also gave her daughter head and stomach aches.
"And the biggest thing was uncontrolled seizures,” says Brooke. “She was having hundreds of seizures every day. Seizures every night. Seizures that not only impacted her ability to go to school to get through the day, but also put her at very high risk of SUDEP, which is Sudden Unexplained Death in Epilepsy, which is a side effect that very few people think about, unless you're in a position where you have to."
This went on for nine months, Brooke says, until she successfully appealed. It's unclear why the appeal took so long, but Olivia, who is now doing well, doesn't want others to go through what she did. The Coopers support a bill sponsored by Democratic State Rep. Charlotte Warren that would make it easier for patients to get exceptions from step therapy. It has the backing of the American Cancer Society Cancer Action Network, whose spokesperson is Hilary Schneider.
"The bill does not prohibit insurance companies from using this practice,” says Schneider. “It makes sure they play by fair rules in instituting these practices."
The bill would automatically grant exceptions and appeals to step therapy if insurers don't make a decision on requests within 24 to 72 hours, depending on the urgency of the case. The bill also provides an override so that if a patient has already tried an alternative medication under a different insurer, there's no need to try it again.
The legislature passed a similar bill last year, but former Gov. Paul LePage vetoed it. The move was supported by the Maine Association of Health Plans.
"Health insurers use step therapy to promote quality and efficacy," says Katherine Pelletreau a spokesperson for the association that represents Anthem, Aetna, Cigna, Harvard Pilgrim, and Community Health Options.
Pelletreau says step therapy in its current form is an effective tool to ensure patients get the right drugs.
"And also to help protect patients from being saddled with higher copayments and out of pocket costs for their prescriptions."
Which is increasingly important, Pelletreau says, as the price of prescriptions outpaces other health care costs.
"And step therapy is one of the tools that health plans and employers are able to use to help manage those costs," she says.
Some studies have found that step therapy does reduce costs for insurers, but other research suggests that the practice may increase health care costs overall.
Bill Murphy of the Epilepsy Foundation of New England, which supports the Maine proposal, says that when patients have a bad reaction after switching medications, they often use the health system more.
"They end up calling ambulances, hospital visits, unnecessary tests when the doctors had prescribed the medication that they knew was best for the individual," says Murphy.
That's been the case for Lori Schnieders, an assistant psychology professor at the University of Maine Machias. She has rheumatoid arthritis.
"In step therapy, I’ve gone into anaphylaxis a couple times because I‘m highly allergic to a couple of drugs," she says.
For years, Schnieders says, she had to try cheaper alternatives to her medications once a year.
"Oh, yeah. Every January, and this is something people don't realize,” she says. “But when you renew on a med, the insurance company reviews it."
Schnieders says she wants to keep health care costs down, but she also thinks she should be allowed to stay on a medication regimen if it's working. She's hoping Maine will join the 20 or so other states that have enacted patient protection laws for step therapy. Meanwhile, at the federal level, the use of step therapy recently expanded to Medicare Advantage Part B drugs.
Originally published 5:16 p.m. Feb. 2, 2018