Patient navigator won’t settle for insurers’ ‘no’
Like most people, Lisa Miller has heard those stories about people forced to choose between buying groceries and paying for vital prescriptions.
She has listened to them first-hand from her patients for years, because it’s her job to find a way to help them avoid that grim choice.
Miller has worked as a patient “navigator” for nearly two decades, the past few years at Columbus Oncology and Hematology Associates. Essentially, she spends her day working in, through and around the maze of rates and rules set for health-insurance companies by pharmacy benefit managers that have a near monopoly in the U.S.
Since Miller works with patients fighting cancer and serious blood disorders, the stakes are high.
So are the prices.
No cheap generics exist for these brand-name specialty drugs, so typical chemotherapy medications run $16,000 to $18,000 a month, she said. The list price for a recent patient’s leukemia treatment was $41,000 for each 30-day refill. That’s $492,000 a year.
Americans spend far more on prescription drugs than anyone else in the
world, the Journal of the American Medical Association has found.
Three patients, one problem
To illustrate the landmines placed in the way of patients in a U.S. health-care system that’s heavily consolidated, Miller recounted her experiences with three patients during a single week in midapril:
The first call came from a woman whose husband was getting good results from a drug he had been taking since 2018 to treat non-small-cell lung cancer. While the medication cost about $18,000 a month, his share was roughly just $3,000 each time.
Miller had gotten him a $10,000 copay card from the drug manufacturer. Since the patient’s annual out-of-pocket maximum under his health-insurance policy was about $8,500, Miller figured he was set for the year.
But the man’s wife told Miller the pharmacy informed her that the $10,000 co-pay card was almost drained less than four months into 2021. Somehow, however, the insurance company said he hadn’t yet come close to paying the $8,500 max.
How could that be? Miller wondered. After multiple phone calls, she found it was because the insurance company was not counting the $10,000 from the drug company toward his annual maximum.
For the first time, the insurer was using a co-pay accumulator, meaning that only money personally paid by the man would count toward the maximum.
With the administration of President Donald Trump giving the go-ahead last year for such controversial accumulators starting in 2021, many patients are finding themselves in the same situation this spring, Miller said. The Biden administration did not change the rule for 2022.
The couple wasn’t rich, but they made too much to qualify for help from several foundations Miller turns to when patients can’t pay for their treatment.
So the couple, still a few years away from qualifying for Medicare, planned to put almost the full $8,500 co-pay on a credit card to satisfy the insurance company.
Miller said she shuddered when she heard that plan, fully aware of the growing problem of bankruptcies caused by medical bills.
About a fourth of Americans taking prescription drugs find it is difficult to afford their medications, a Kaiser Family Foundation study found. Even more, about 30%, said they didn’t take their medications as prescribed at some point in the preceding year because of the cost – including 12% who cut pills in half or skipped a dose.
West Health, a nonprofit based near San Diego, says more than 100,000 in the U.S. die every year because they can’t afford prescriptions they need.
Foundations help pay for drugs, but that money is disappearing
The same premature drawdown of a drug manufacturer’s co-pay card happened to another patient, a man in his 40s. But this time the Pbm/insurer used a different tactic to jeopardize the supply of medications he’d been taking for three years.
In theory, his prescription was for 30 days. But it turns out the PBM and insurance company are limiting him to a refill only every half-month. That increases his share of the cost to roughly $2,300 for about 15 pills.
The patient doesn’t have the money. He doesn’t want to burden his family by using so much of their income to cover his meds.
“He all but cried on the phone, which was heartbreaking to me,” Miller said. “He’s scared and, I mean, I understand that, you know?”
Half of all U.S. adults in a Gallup Poll released in September 2020 were concerned that a major health event in their household could lead to bankruptcy, while 15% said at least one person in their household currently had medical debt that will not be repaid – either in full or in part – within the next 12 months
This patient’s story has a happier ending, however.
Because of his lower income, Miller was able to get him enrolled in a special patient-assistance fund with the drug maker.
That’s part of what she does. If she can’t pry aid out of the pharmaceutical
company, she’ll turn to her list of foundations.
Some of those are geared toward those who don’t earn much; others are limited to helping patients with a specific kind of cancer.
She’ll even try to match a patient with the foundation that could provide the most money.
Unfortunately, those dollars have become harder to come by in recent years, as many foundation funds have all but dried up, she said.
Finding a way to cover $41,000 a month for leukemia meds
The third patient for that mid-april week is the one with the eye-popping $41,000-a-month prescription for Rydapt, which treats leukemia.
“That’s the highest I’ve ever heard of,” Miller said.
The best part is that this patient was enrolled in Medicare, which means he has to pay for only a small percentage of the huge cost. Even paying 5% for one drug that costs about half-a-million dollars annually still means the leukemia victim must come up with some $25,000 a year.
“Nobody wants to go and use your life a savings or (be forced) to make a decision, ‘Do I buy my groceries or go buy my medicine this month?’ Especially if this is medication keeping a patient’s blood counts where they need to be, (or) we’re keeping the patients diseases where they need to be and in control.”
This time, Miller’s solution was a hybrid. She got the patient enrolled in a foundation that pays $7,000 a year.
And again she turned to the drug maker for aid, which was granted.
While these patients all wound up obtaining help from the very companies that are setting these drug prices so high, Miller said such attempts aren’t always successful.
In fact, sometimes the pharmaceutical firms engage in a back-and-forth with patients, requesting more and more information from them until they simply give up.
‘You don’t want to give him three extra months of life?’
Miller, who lives on the western edge of Columbus, didn’t set out to be a patient advocate. She started out pre-certifying patients at Mount Carmel St. Ann’s Hospital in Westerville, then added billing to her chores after moving to Ohiohealth Grant Medical Center.
That’s when she discovered that even a modest percentage co-pay could be enormous for very expensive drugs.
“I started calculating, and that 20% was, whoa! And I thought, there’s got to be a better way out there.”
Now, after performing the role for 19 years, she has developed a unique skill set, part bureaucracy-slayer, part scavenger.
“It’s not really something I can teach somebody, you know? Ever patient is different. Every individual has a story. And you just have to listen to the stories to figure out where to start.”
She remembers vividly the case from early in her career that lit her fire to stand up for patients.
A doctor asked her to get insurance coverage for a revolutionary new treatment that would enable needed chemotherapy drugs to penetrate a patient’s stubborn tumor. It cost the then-shocking amount of $7,000
“When I met the guy, my first thought was, ‘This could be my dad … and I need to figure out what I can do to help him,’” she remembered.
“So I got somebody on the phone, and they said, ‘Yeah, we’re not going to approve it.’”
In what would turn out to be a twohour process, she next talked to a nurse who worked for the insurance company.
“I was so mad at that nurse, because she came back to me and said … ‘I’m reading all the studies that you sent in, and the studies are only showing that the benefit is possibly three months of life.’
“Oh, my gosh; my heart sank. Very firmly, and without screaming – because I wanted to scream – I said, ‘This is your dad and you are seven months pregnant. You’re telling me that because of the cost, you don’t want to give him three extra months of life?’
“I was so furious.”
The nurse quickly put her on hold. When she came back on the line, she was apologetic, Miller recounts: “‘I’m sorry, nobody has ever come to me that way. I get what you’re saying, but this paper in front of me says I can’t approve it.’”
So Miller continued up the ladder, asking to speak to the insurance company’s medical director, a doctor.
After again strenuously making her case, the director promised to get back to her.
Two weeks later, Miller found out that the payment for the new treatment had been approved.
“That was my first experience where I thought, ‘Somebody’s got to fight for these people. It’s just not fair,’” she said.
“It’s all about the money. This is somebody’s life, and you’ve got control over it, and you’re telling me no?”
A grant from the nonpartisan, nonprofit National Institute for Health Care Management helped pay for research for this story, but the organization had no input on its content. drowland@dispatch.com @darreldrowland
“Nobody wants to go and use your life a savings or (be forced) to make a decision, ‘Do I buy my groceries or go buy my medicine this month?’ Especially if this is medication keeping a patient’s blood counts where they need to be, (or) we’re keeping the patients diseases where they need to be and in control.”
Lisa Miller, patient navigator