It took years for Leslie Miller to find the prescription drug that worked for her. But in December, she got a letter from her insurer that the medicine would no longer be covered by her insurance plan starting January 1.
"My heart started racing immediately," says Miller, a graduate teaching assistant in the University of Oklahoma's sociology department. "I've had this happen before and it's scary."
Miller, 42, of Lawton, Okla., was diagnosed with cancer when she was a teenager in the 1990s. She underwent nine surgeries in four years. Although she's cancer-free today, her treatment left her with nerve damage that hindered her ability to go to the bathroom. A drug called Linzess helped. With a manufacturer's coupon, she was able to get the medicine for as little as $30 a month.
That was before her insurer dropped Linzess from the list of drugs it covers, called a formulary. Miller needed her doctor to get permission from the insurance company to prescribe the drug, a process called prior authorization. But even that was denied.
"So here I am in January, needing this medication because I'm five days almost out, and I had to pay $330 after the manufacturer coupon," Miller says, adding that she is asking her doctor to appeal the decision.
She's not alone. Insurance plans are covering fewer drugs, according to new research by GoodRx, a website that helps patients get discounts on drugs. And even the ones they do cover are getting harder to access.
GoodRx analyzed thousands of Medicare Part D plans from 2010 through 2019 and discovered that the proportion of available drugs covered by the average plan dropped from 73% to 56%. But because Medicare has coverage rules that private plans like Miller's don't, such as a requirement to cover all cancer drugs, it's possible private plans are even worse, according to GoodRx.
CVS Caremark and Express Scripts, companies that handle drug coverage for many commercial insurance plans in the U.S., announced that they would stop covering dozens of additional drugs in 2020, pushing their lists of formulary exclusions to around 300 each. Express Scripts says many of its newly excluded drugs have alternatives with lower cost generic, brand or biosimilar alternatives.
"The odds of a drug being covered are much worse year over year than they had been," says Thomas Goetz, chief of research for GoodRx. "That can be a real shock to the system for people. And then the question is, 'Well, OK, what do I do?' "
Sometimes, when a brand-name drug is kicked off a formulary, the patient is forced to switch to the generic. Other times, there may not be a generic. Patients may have to jump through hoops to get back on their drug, or they may have to switch drugs — or insurance plans — altogether.
So why is drug coverage shrinking?
Pharmacy benefits managers, the middlemen who negotiate with drugmakers on behalf of employers and insurers, are looking to drive better deals.
"It's important to recognize that not all exclusions are bad," says Ameet Sarpatwari, assistant director of Harvard Medical School's Program on Regulation, Therapeutics and Law. "In the case where there are many drugs on the market for a particular condition, a PBM will attempt to negotiate with manufacturers, saying that... 'If you do not provide a good price, we will not cover your drug and instead cover somebody else's drug.' "
The problem, he says, arises if a drug is chosen or excluded from a plan based onlyon cost. Sarpatwari says PBMs should also consider how effective a drug is relative to the other drugs. But there isn't enough transparency in how formulary decisions are made to know whether that's happening.
PBMs convene committees to weigh all these factors, says JC Scott, who leads the PBM trade group, Pharmaceutical Care Management Association. But if PBMs were fully transparent, he says, the negotiated rates could get out and actually drive prices up.
He acknowledges that PBMs and doctors don't always see eye to eye about which drug to prescribe. "I think we're all collectively trying to grapple with higher drug costs from drug manufacturers," Scott says. "And we all have a part to play in trying to address those costs."
Miller's insurer seemed to be trying to push patients to a rival drug, Trulance, which struck her as odd because it was only $10 cheaper than Linzess. She called her doctor to find out about her options
Many patients don't think to call their doctor when they find out a drug is no longer covered, says oncologist Barbara McAneny, a past president of the American Medical Association.
"Often, we end up calling the patient to say, 'Did you get that medication?' " she says. "Or we'll see a patient back for a follow-up visit and say, 'How are you doing on that medicine?' And they'll say, 'I never got it.' "
Physicians and members of their staff spend hours every week on the phone seeking help with prescriptions from insurance companies. Sometimes, the drug isn't covered. Or sometimes, there are just hoops the insurer wants the patient to jump through.
GoodRx also found that 42% of drugs covered in 2019 still had various restrictions on reimbursement. These could include a requirement that a patient try and fail other, cheaper drugs before getting access to the expensive one a doctor recommends. Or it could mean prior authorization, which means health care providers need to obtain advance approval from insurers before prescribing a drug.
McAneny says at her cancer care practice, she has "five employees who do nothing but prior authorization."
Even if her office can find a workaround to get patients restricted or off-formulary drugs, it takes time. "Emotionally, it's agony for the patient because they get increasingly scared, as anyone would," she says. "But medically, it's very bad to have an interruption in treatment."
As for Miller, she decided to stay on Linzess and appeal to her insurer.
"That's what I do," she says. "I've done it my whole life with insurance companies."
In March, after more than two months of fighting, her insurer agreed to cover the drug.
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