Rachel Harger struggles to find the words to describe her pain. She speaks carefully, each word seeming to take significant effort. “You just, you can’t do anything,” she says. “You can’t function.” The lights in the dining room of her Austin home are dimmed, the house quiet, to manage the severe migraines she’s battled for most of her life.
That night, Harger emails me. “I’m not sure anyone has ever asked me what a migraine feels like. So, I wanted to try again to answer,” she writes. “I still think words are mostly inadequate, but part of the pain feels like having your head in a vise. If you put one of your fingers in a vise and squeezed until it was throbbing, that would be similar. But in the case of a migraine, you’re not sure when the pain is going to end or subside.”
Harger’s migraines are so severe that she must avoid being in the sun too long and visiting noisy places like restaurants or concerts. “I don’t have much of a life because I have so many problems that just getting out of the house is kind of a problem,” she says. In 1997, her neurologist prescribed Methergine—a drug typically used to stop bleeding after childbirth—which constricts blood vessels and can ease vascular headaches like Harger’s. Of the countless medications she’s tried over the years, she says, this is the only one that’s worked.
Harger, 51, who also has fibromyalgia and a slew of other health issues, had to stop working about a decade ago and qualified for disability and Medicare. With Methergine, “I can get out of bed and go to the grocery store—sometimes,” she says. She estimates that the medication reduces her pain by about half, but even then, it can be so severe that she can’t always make it to the doctor’s office for other ailments. “So none of this is by any means a cure. It just makes it more manageable,” she says.
But that’s been jeopardized recently. In 2018, Harger sued the federal government after her Medicare Part D plan refused to cover Methergine, which she had gotten through the program for 10 years. The change happened after her husband’s retirement system switched them to a different Medicare provider, according to Harger, who says she could no longer find a Part D plan that would cover Methergine. Meanwhile, the average cost of the medication increased by about 60 percent from 2016 to 2018. (The cost of the generic version more than doubled from 2017 to 2018.) The skyrocketing price and her coverage denial meant that Harger went from paying as little as a $6 copay to as much as $7,000 for a one-month supply. She’s managed to get it for around $650 per month through coupons from the site GoodRx, which offers discounts on prescription drugs. But that’s unreliable. In November, a month of Methergine pills cost her just over $1,600 with a coupon. This month it’s about $1,200. Anytime, it could be thousands more.
At the crux of the issue is the fact that Medicare Part D, the program’s prescription drug benefit, does not cover off-label drugs—medication prescribed by doctors for conditions other than those it has been FDA-approved to treat. Off-label prescriptions are relatively common, making up about one-fifth of all U.S. prescriptions. But Medicare Part D only covers these drugs if the off-label use is listed in one of three officially designated drug encyclopedias—a rule that some advocates and health professionals have criticized as “onerous” and out of touch with medical practice.
Harger’s lawsuit points to an article in one of the encyclopedias citing the use of Methergine to treat cluster headaches, an ailment similar but not identical to hers. This, together with her experience and doctors’ support, shows the “medically necessary” drug should be covered in her case, the suit argues. An administrative law judge sided with Harger in mid-2018, but that decision was later overturned in subsequent appeals.
The federal government argues that the similarities between cluster headaches and Harger’s migraines are “irrelevant.” The defendant, U.S. Department of Health and Human Services Secretary Alex Azar, “does not dispute that Plaintiff and her physician consider Methergine effective to treat Plaintiff’s chronic migraines, but the fact that Methergine is effective for Plaintiff does not mean the drug is covered under Medicare Part D,” wrote a U.S. government attorney in a filing last summer. In late January, a federal judge in Austin sided with HHS in Harger’s case, Harger v. Azar, the latest and likely last phase in her two-year appeal process.
Harger’s lawyer, Neal Johnson, says courts should consider patients’ specific positions. “I personally would never argue that that article supports the use of this drug as a first line of treatment in a newly diagnosed migraine patient,” he says, “because there are a ton of other drugs out there that have shown to be efficacious and, quite frankly, are safer. But when you’re looking at a patient who has tried literally everything out there that there is to try, and this one medication works for her, the argument is that that article in this particular case supports that use.”
There’s been some push to bring the Part D off-label rules in line with the less rigid requirements in Medicare Part B, which covers outpatient services like doctor visits. Under Part B, off-label uses are covered if supported by peer-reviewed literature. In a June 2019 letter to members of Congress, the Center for Medicare Advocacy, a national nonprofit that Harger says helped with her case, wrote that the “inconsistency” between Part D and other insurance programs when it comes to off-label rules “created serious barriers to access to effective and sometimes life-saving prescription drugs.” According to Leigh Purvis, director of health services research in the AARP Public Policy Institute, you “can never say for sure,” but given past studies on the subject, Harger may have been able to make the case for coverage of the drug under Medicare Part B rules.
The Centers for Medicare and Medicaid Services did not answer questions from the Observer regarding the case or how frequently Part D off-label appeals occur.
The Medicare appeals process can be unwieldy for many patients, Purvis says, but off-label use is an especially complicated topic. It “does obviously have a place because certainly it’s happening and it is helping patients,” she says. But there is reason to limit coverage, she says, namely that some manufacturers promote their drugs in cases when they shouldn’t be used, which can endanger patients and lead to higher costs. “So it is coming down to striking the right balance: making sure people have access to drugs if they’re working for them, but also making sure they’re not using the drugs unnecessarily.”
When I ask Harger if she’s gone without Methergine at all during the appeals process, her eyes widen at the impossibility. One attempt to stop taking the drug entirely left her incapacitated and resulted in a six-day hospital stay requiring both IV fluids and medications, according to her lawsuit. The four pills she takes daily are already a cost-driven reduction from the six prescribed originally. When she’s tried to cut the dosage back further, she says, “It’s like torture … There’s no way I can live like that.”
Over the past couple years, Harger says, she’s continued searching for other medication to replace Methergine. She’s recently started thinking about traveling to other countries to get it more cheaply.
The Medicare denial, and the sense that she’s near out of options, has had a domino effect on Harger, leading to severe anxiety, depression, and financial stress. She worries that the cost of her Methergine will only climb without action to halt rapidly rising prescription drug costs in the U.S., leaving her to “choose between bankruptcy and intolerable pain.” Her husband, Steve Bratteng, a biology professor at Austin Community College, tells me that he recently saw her browsing guns online. Harger, sitting next to him, gives a small nod.
Still, in some ways she feels lucky: that she was actually able to make it through the Medicare appeals process; that she can even entertain the idea of traveling to another country for care; that the couple is able to afford her medication—at least for now. But if the coupon disappears, if the cost goes up to $2,000 or even $7,000 each month, they don’t know what they’ll do. “That’s why I’m looking at,” Harger’s voice trails off, “the most extreme option.”
“We’d be bankrupt pretty quickly. And she would still have the headaches,” Bratteng interjects. “So then we would—I don’t know.”
“It’s not gonna kill me,” Harger says. “But I know I’m gonna wish I was dead.”
If you or someone you know needs help, call 1-800-273-8255 for the National Suicide Prevention Lifeline.
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