My war with Blue Cross & Blue Shield of Minnesota

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City Pages

It’s June and I’m on another first date, drinking at a sidewalk cafe in Minneapolis.

My date, an artist with a penchant for putting Sharpies to skateboards, seems wholly unaware that I’m already buzzed, though happy hour’s close remains in the distance.

I have rediscovered my love of coffee- and cocktail-fueled writing benders a few weeks after flying to Minneapolis from Kenya, where I work as a freelance journalist.

“So what brings you back to Minneapolis?” my Tinder Swipe Right asks, oblivious that my answer is spiked with two glasses of chardonnay and about a gallon of espresso.

“Well, if you’re talking literally, I would say a nonrefundable airline ticket to visit my now ex-boyfriend,” I answer. “But figuratively, I came home to spend time with my 94-year-old grandfather, who’s in hospice.”

I pause to take a long drink from my gin and tonic.

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Self-portrait taken last summer while Katie was in the midst of a particularly bad narcolepsy episode while fighting Blue Cross at the same time. Katie G. Nelson

“I also have narcolepsy,” I add. “I take Adderall — like, a lot of Adderall — to function. They don’t have it in Kenya, so I bring it from the U.S.”

Silence. I probably should’ve just said I was visiting family, omitting any mention of my autoimmune disease made famous by the movie Deuce Bigalow: Male Gigolo.

“I work with a lot of overmedicated kids,” he replies, referring to his gig moonlighting as an art teacher. “That’s the first time I’ve ever heard anything positive about Adderall, ever.”

I ease into the awkward silence with another sip.

“Trust me, I wouldn’t be alive without it.” I deadpan. “Adderall saved my life.”

This might seem a lofty statement for a prescription stimulant known for its addictive qualities and reputation for abuse. But the truth is Adderall did save my life. The proof reveals itself in the spider webs of scars carved into my forearms.

“Can I get you two anything?” the waitress cuts in. He looks at me. I nod back, suggesting it’s up to him.

“Yeah,” he replies. “Another round.”

 

I was a few days shy of my 30th birthday when I returned to my parents’ house in south Minneapolis. My recent repatriation from the chaotic streets of Nairobi was a result of a sucker punch of shitty situations: an out-of-the-blue breakup with my Minneapolis boyfriend, the pending death of my much-loved grandfather, and a lingering lung infection that landed me in a Nairobi hospital, which resembled something from The English Patient.

But of all the crappy situations I was facing, one was most formidable: dealing with Blue Cross Blue Shield of Minnesota.

I was diagnosed with narcolepsy when I was 25. It’s an autoimmune disease that disturbs the restorative stage of sleep, leaving me exhausted during the day and an insomniac at night. Still, as bizarre as it seemed, my diagnosis ended a 10-year cycle of depression so intense I almost didn’t survive. 

I was a healthy child whose gentleness was only outmatched by my bleeding heart. But my soft demeanor seemed to catch an edge around high school, turning what was routine teenage melancholy into a tunnel of unrelenting depression that eventually landed me in a locked hospital unit.

I turned my anger inward. Anorexia was first, satiating my obsession with self-punishment until I was nothing more than a human marionette of twisted bones propped together with paper skin. After high school came forced isolation, a way of protecting others from my emotional volatility, which seemed to sweep through me suddenly and with growing frequency.

By mid-college, most of my free moments were spent buying drugstore makeup to cover the million little cuts I sliced down my forearm.

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My parents realized something wasn’t quite right. First, they chalked it up to hormones, a chemical imbalance in my brain, or the fact that my conservative schooling didn’t tolerate girls who preferred Sylvia Plath to prep rallies.

They sent me to a shrink. Despite piles of antidepressants, hours in cognitive behavioral therapy, family therapy, music therapy, and two stints at an eating disorder program, my emotional instability continued to worsen to the point of tempting death.

 

“I swear to god, I didn’t want to die. I just wanted to sleep forever.”

It was a frigid December night in 2011 when my longtime boyfriend found me quietly carving away at my left forearm with a razor.

“What are you doing, Katie?”

My eyes remained transfixed on a series of small slices filling with small red dots of blood.

“I’m really tired and everything hurts,” I said. “But not the physical pain, like when you break a bone. The kind of pain that makes you want to slice apart your flesh so you can crawl out of your own skin.”

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Katie Nelson, on assignment in northern Kenya.

He called my mother.

Heeding the warning on my physician’s voicemail — “If this is an emergency, please call 911 or go to the nearest emergency room” — they loaded me into my boyfriend’s Chevy Suburban and drove me to the nearest emergency room.

I was taken behind a thin blue curtain and asked a series of questions. “How are you feeling, Ms. Nelson?” the young doctor asked.

“I’m really tired — like I could sleep forever,” I explained hesitantly. A cotton sheet divider was the only thing hiding my shame from the other patients.

“Why did you injure yourself?” he asked, gazing at my damaged arm.

“Because everything hurts and nothing makes it better. I’m exhausted.”

I found an open bed and quickly fell asleep. An hour later, I woke up feeling better — not great, but not wanting to sleep forever, which seemed like progress.

“I’m fine now,” I informed the doctor. “I mean, I’m still really tired, but think I’m okay.”

“I don’t think so, Ms. Nelson. We’re going to send you somewhere where you can be monitored. We need to make sure you don’t hurt yourself again.”

“What?” I pleaded. “I think you’ve made a mistake. I’m just really, really tired.”

He was not convinced.

A few minutes later, three strong-armed medics and a cop put me in the back of an ambulance. I arrived at a second hospital and was taken to a wing sealed shut by two steel doors, a place for psychiatric patients the emergency room couldn’t handle.

Behind the locked doors were a dozen patients, half wandering aimlessly around the living room, the rest watching a muted talk show on a television locked inside a steel cage.

“I swear to god, I didn’t want to die,” I told the intake nurse, who was inspecting my bandaged arm.

“I’m sure you didn’t,” she said.

Instead of releasing me to my family, the nurse took me to a small, white-walled room with a single window overlooking East 28th Street.

“Schizophrenia and meth don’t play nice,” my middle-aged roommate explained while taping handfuls of family photos to her side of the wall. Apparently she planned to stay for a while.

I wrapped a blanket around my shoulders, lay down on the bed, and cried, finally realizing what everyone else already knew: I was sick and I wasn’t getting better.

“Ms. Nelson, you promise you won’t cut your arms again, correct?” a young doctor asked the next morning.

“Sure,” I replied.

I somehow convinced the on-call physician to discharge me the following afternoon by making a plethora of promises I had no intention of keeping.

I left the hospital traumatized and deeply terrified of what my mind was capable of. I vowed never to ask for help again. I decided I would rather die alone.

 

It’s a year later and I’m barely alive.

“I’m going to give up,” I told my psychiatrist, Allison Holt. She had taken over my care after I fired her predecessor for loading me up with a slew of psychotropic medications that made my face twitch uncontrollably.

I was spending up to 22 hours a day in bed, only rising to drink coffee or boxed wine, depending on the time of day. Most of my doctors assumed my all-day sleep regime was a side effect of the 10 medications I was taking, or an unusually severe bout of depression. Allison did not.

“You need to get a sleep study,” she said, an occasional request she made more forcefully this time. Finally, I acquiesced.

I arrived at the sleep clinic 20 minutes late and looking like hell. I had slept all day and, despite chugging coffee en route, was still exhausted.

A nurse escorted me to a bedroom that resembled something from a Holiday Inn, gluing a handful of wires to my scalp before putting me to bed. I was surprised to awake the next morning feeling somewhat refreshed.

“You have narcolepsy,” my neurologist explained. “It’s a chronic sleep disorder that makes you feel like you haven’t slept for a week. There is no cure for it, but there are medications that will help.”

He handed me a prescription for 60mg Adderall — a stimulant used to treat attention deficit hyperactivity disorder. The dosage was later cranked to 90mg.

That afternoon, I swallowed two capsules and fell asleep on my parents’ couch. Forty-five minutes later, I woke up a different person — feeling clear-headed and more awake than I had in my entire life.

In less than one hour, Adderall, a medication demonized by many for its common abuse, had done what dozens of physicians and specialists failed to do. It ended a decade of suffering at the blade of my own mind. I was suddenly free.

“I felt like I finally got my daughter back,” my mother said. “It was a miracle.”

 

It’s a strange feeling, spending an entire decade in unimaginable pain, only to have everything you’ve lost — your spirit, your passion, your sense of feeling human — quietly return to you.

But that’s what happened on January 26, 2012, the day I got my life back.

A few weeks after my first dose, I reenrolled in graduate school, quickly regaining a sense of normality and routine. My once-debilitating depression became almost obsolete. By spring, the only traces of my tragedy were the white scars running down my forearm.

But while the semblance of a human took shape, internally I was still profoundly wounded, grief-stricken by my past and haunted by a fear that everything could be taken away again by a handful of pills.

I was also terribly lonely, a state of mind compounded by the fact that I had no idea what to do with all my free time. I had few hobbies or interests outside of staying awake and alive. Worse, despite years of therapy, I was still very much a stranger to myself.

One year and four months after finding out I had narcolepsy, I graduated with a master’s in public health — only to promptly bail on health care for a career in journalism.

I had dabbled in freelancing for a local paper, but was forced to abandon it after sleeping through one too many deadlines.

So I contacted one of the only editors in the Twin Cities who was harder off than me: Nick Coleman. The former columnist known for hounding both sources and colleagues alike had just taken over The Uptake and was looking for hungry — and perhaps desperate — journalists. I was hired on the spot.

My rookie reporting gig quickly steamrolled into a proper career. Still, I couldn’t shake the feeling I was living in the shadows of my past, fearful that I was too sick, too fragile, too dependent on medication to pursue a bigger life.

I was faced with a choice: Stay in Minneapolis and remain tethered to the fear of my own darkness? Or leave and take a gamble on my second chance at life?

On a sweltering June afternoon two years ago, I boarded a plane to begin again as a foreign correspondent in Kenya.

 

BANG. BANG. POP! POP! POP!

I’m crawling on my hands and knees and can’t see a goddamn thing. The ground is shaking with each echoing BOOM as bombs of black smoke explode at my feet. I take cover under two plastic lawn chairs that quiver with each blast.

“All right, Kate!” my colleague Anders Hammer yells. Too loud to hear, he gestures a countdown with his fingers. “One, two ... three!”

We run toward a heap of plastic dummies strewn 100 feet ahead. The combination of sounds, smells, and 90mg of Adderall leaves me choking for air, my heart pushing violently against my chest.

“You take his legs and I’ll get his arms!” I yell to Hammer, who’s already putting a tourniquet on a dummy whose limbs were blown off moments before.

I begin threading the tourniquets into two loops, but am hit by something hard and hot on my lower back.

“SHIT!” I yell, falling down to my knees, the ground reverberating.

I’m in the middle of a firefight in Nairobi. A simulated one, I should say.

It’s the last day of a battlefield medical course for journalists who work in conflict. We’re practicing stopping femoral bleeding, treating bullet holes, cleaning shrapnel wounds.

Thankfully, the bombs are only massive fireworks and stink bombs. Still, Black Cats hurt when they hit open flesh.

I’d successfully avoided rubber bullets and cluster bombs since coming to Nairobi, opting for stories on gay rights and environmental degradation, rather than seeking out the bang-bang of neighboring Somalia.

That said, life in the city fondly known as “Nairobbery,” for its theft and petty crime, isn’t without its challenges, especially when you’re living with a chronic illness.

Traveling abroad is nearly impossible for people like me. Many countries — including Kenya — ban stimulants like Adderall. But it was my insurance company, Blue Cross Blue Shield of Minnesota, that made life most difficult.

I first confronted America’s insurance clusterfuck a few days before my 26th birthday. Ripening out of my parents’ plan and constrained by a pre-existing condition, I was forced to buy a policy under the Consolidated Omnibus Budget Reconciliation Act — aka COBRA — which may be the most expensive insurance ever.

Then came the Affordable Care Act — aka Obamacare — which banned insurers from refusing to cover pre-existing conditions. It was a godsend.

After conferring with dozens of companies and spending countless hours on hold, I enrolled with Blue Cross Blue Shield of Minnesota.

My new insurance policy seemed like a decent, albeit expensive plan, chosen for its low prescription copays and clear “vacation override policy,” which allows patients to collect several months’ worth of medication in advance before an extended trip. But as they say, the devil is in the details.

 

“This is a courtesy call from Walgreens pharmacy located at the southwest corner of Lyndale Avenue South and 54th in Minneapolis. Your prescription scheduled for pickup has been delayed. We are attempting to contact your insurance carrier for additional information. We will contact you as soon as possible by phone when your prescription is ready for pickup. Thank you. Goodbye.”

Goddammit. My prescriptions are denied again.

It’s June of last summer, and I’ve just flown to Minneapolis after five blissful months in Kenya. Things aren’t going as planned.

“I think Blue Cross wants me to give up,” I tell my mom.

I’ve been battling my insurer for weeks. Blue Cross is refusing to approve a five-month medication advance — known as a “vacation override” — for another stint in Kenya.

I’m not surprised.

Vacation overrides allow patients to get more than one month’s worth of medication at a time, freeing frequent travelers like me from the 30-day refills often required for controlled drugs like Adderall. 

I’ve gone through the process a half-dozen times before with other insurers. Each is different. All are complicated.

I submitted my first override to Blue Cross in January 2016 with the help of my doctor’s administrator, Lisa Smith. Requesting six months’ worth of Adderall was far from straightforward.

Over two months, Smith and I spent countless hours on the phone with departments and divisions, attempting to clarify obscure policy details with representatives who often had no idea where to find the override policy in my plan. Or even what a vacation override was.

It was a grueling and deeply emotional experience that left me questioning whether anyone in the insurance industry even cared about the patients they were hired to serve.

Now, six months later, Smith and I were on our second time around. We felt more confident it would go smoothly.

We were wrong.

 

Smith calls Blue Cross to verify my override policy is the same as the year before. But neither she nor I can find anyone remotely knowledgeable about overrides — or who can even provide me with a copy of my policy.

Instead, we are passed from person to person until the line inevitably goes static. It is the second week of June.

Eventually, Smith finds an online application form for Prime Therapeutics, the Blue Cross subsidiary that sets prescription costs, approves medications, and arranges contracts with pharmacies.

Despite being owned by Blue Cross, Prime often operates on a completely separate set of standards, which, in my experience, often contradicts those of Blue Cross.

Nonetheless, Smith files requests for each of my seven medications. Prime will make a decision within 10 days.

“It seemed to be too good to be true,” Smith would come to say. “And I was right. It was too good to be true.”

 

It’s now July 7. I’m almost out of Adderall.

My request is stuck in Prime purgatory. Walgreens refuses to dispense my monthly prescriptions until Prime gives the OK.

On top of that, Smith has bad news.

“Prime just called. [Blue Cross] gave me the wrong information,” she says. “You do need to request a second travel override request to Blue Cross Blue Shield, not Prime.”

This isn’t the worst of it, she adds. Prime now says that my plan allows only one override a year. Since I used it in January, I’m not allowed a second request.

“Prime,” she adds, “said it was not their problem anymore.”

This is bad. I can’t get back to work. I only have a few days of medication left. Worse still, my life is caged between two companies actively keeping me from the medication that keeps me alive.

My mother, who has spent 30 years managing a Minneapolis children’s hospital, senses my panic and steps in.

“Where is the travel override policy in her plan?” she asks a Blue Cross rep.

“Who’s responsible for making these decisions?”

“Can you appeal the policy?”

No one at Blue Cross can answer her questions. In fact, they can’t even find a copy of my policy, much less interpret the fine print.

“Your plan doesn’t necessarily list all those intricate things,” explains Dawn Jones, a pharmacist in Woodbury. “If the change doesn’t address a certain percent of their clients, insurers don’t feel there’s a need to inform people, so then they don’t. But you don’t know that until you go to the pharmacy and there’s an issue.”

Smith keeps digging.

After logging dozens of hours on the phone, she finally reaches someone in Prime’s clinical review department. Their suggestion? Submit yet another override request to Prime, with a note requesting that Blue Cross “override the first override.”

Essentially, it would mean asking Blue Cross for a one-time policy change.

We rush the new request, which requires a documented itinerary for my upcoming trip to Kenya. But I am not an optimistic woman. Nor a rich one. I am not very willing to gamble $1,500 on a non-refundable plane ticket in hopes of picking up my Adderall by the departure date. My parents gamble for me and we book a ticket.

Smith calls again with good news — sort of — saying my request for a second override is “officially under review.” A decision will be made within 72 hours.

 

It is July 12, more than a month into my phone war of attrition with Blue Cross. And still no word.

Smith contacts Prime. More bad news. The company has been sitting on the request without action.

Even worse news comes from Blue Cross, which now says Prime provided the wrong information. In fact, patients are never allowed one-time policy changes, irrespective of circumstance. Nothing can be done. 

“But what happens if a patient travels out of the country a few times a year?” Smith asks a company rep. “Are they responsible for paying for their medications out of their own pocket?”

Blue Cross suggests having a doctor prescribe a greater dosage than needed to make the medicine last longer, an idea posed by another rep a few weeks before.

There is a small problem with this.

“That’s falsifying medical records,” says Dr. Bryan Schwieters, my physician. And it could be illegal. 

I am furious. Furious that my insurance company preferred to pass me between divisions, departments, and parent companies rather than take responsibility for dealing with my case. Furious that I am forced to fight for medications to treat a disease that I never asked for and never wanted. More than anything, I am furious that after 10 years of suffering, my life — my second chance — is being determined by two large companies that clearly do not give a single shit about me.

“I honestly don’t know what to say, other than sorry about all of this and it was basically just a huge waste of time on both of our parts,” Smith writes in an email. “I just don’t know what else I can do on my end ... I’m so very sorry.”

It seems I will never return to Africa.

 

“Thank you for using Walgreens pharmacy located at the southwest corner of Lyndale and 54th in Minneapolis. Your prescription is ready to be picked up at the Walgreens pharmacy. Thank you, goodbye.”

“Huh, that’s weird,” I tell my mom. “I thought Blue Cross denied my request.”

It is July 18. My mother agrees to stop by Walgreens. “But don’t get your hopes up,” she warns.

Waiting for me are five bags of medication, enough for a 90-day trip abroad — 60 days less than I requested. Strangely, Blue Cross has covered everything.

I have no idea why. Neither does the pharmacist.

I contact Blue Cross. Unfortunately, getting answers from its communications team is almost as painful as getting medications approved.

“We’re looking into your questions and will follow up shortly,” writes Laura Kaslow.

She does not follow up shortly. After hounding the company for a week, Blue Cross releases a generic statement.

“Each person’s situation is unique,” it reads, adding that factors such as “whether a member is traveling within the United States or abroad, the length of travel, and the types of prescriptions requested” determine if a request is approved or denied.

Prime isn’t much better, refusing to comment on my case because “statements may not apply across our book of business,” says Denise Lecher.

I continue to contact both companies, asking for a copy of my policy. Their response is to pinball me between communications teams over the next 10 months, my questions unanswered.

 

I return to Nairobi. But while my work brings me to some of the most difficult parts of the world, I cannot escape the fact that my life can be determined by two companies.

That was until January 18, 2017, when my third request for a one-year override was mysteriously approved. I collect 365 days’ worth of Adderall.

I will never know why Blue Cross agreed to release my medications. Friends suspect it buckled under pressure from a journalist, her physician, and her family who wouldn’t give up.

According to my pharmacist, it was the first time in her career that she’d ever seen a patient successfully request that amount.


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