ADALIMUMAB by Heather Aruffo
New Year’s Eve, 2002. Worcester, Massachusetts. Snow falls in fat, lethargic flakes past the window. Outside, the night is black. I am nine years old, and my family is out to dinner with the neighbors. We are new to town, new to Massachusetts; my dad had taken a job at Abbott Laboratories nine months earlier, to lead the Abbott Bioresearch Center in Worcester, the second time we have moved for his job in my life so far. My dad is my favorite person in the world; every Saturday he takes me out to do something together, which he calls “special time”. We go bike riding or to the zoo or to the museum and on the way home, when my younger brother is asleep, he asks me questions about how to solve the problem of burning fossil fuels, tells me stories about Mexican history.
The restaurant is one of those where people cook Japanese food in front of you, and the air smells of sesame oil, grease. Steam floats in clouds from the top of the hibachi grill. Food sizzles. The neighbors have two children, the same age as my brother and me, and both of our mothers have been diagnosed with breast cancer in the past year. My mom’s hair is short and baby soft. Her treatments finished a month ago. This is something to celebrate.
Every so often, my dad unfurls himself from his chair, Blackberry beeping furiously, and paces behind the glass doors in the entryway. I can tell from how his lips move that he’s speaking in his work voice, the one I only hear sometimes, measured and organized and serious and always in English.
I understood vaguely that a drug had been approved, a rare and exciting occurrence. A reason to use the work voice, to take phone calls on New Year’s Eve. My dad was a scientist, the son of Italian immigrants to Mexico, and fifteen years ago, his work on expression cloning and immunoglobin fusion proteins had revolutionized immunology. Since then, he’d worked in the pharmaceutical industry, first at Bristol Myers Squibb, where he’d led forty researchers and published over 170 papers, then in management. He was passionate about science and always late for dinner and answered email from his laptop late at night. Family vacations were punctuated by teleconferences, taken in the car while my mom drove. The day I was born, my dad arrived at the hospital with a pail of liquid nitrogen, to transport my umbilical cord to the lab for the stem cells.
”Lo sabes lo que es un patent?” my dad asked from the front seat of the car, staring at me through the rearview mirror. By then, it was springtime. The drug had been approved for four months.
I shook my head. Trees flew past in a smattering of green. I didn’t know what a patent was.
“It takes a long time to make a new medicine. A lot of medicines that we try don’t work. How many medicines do you think work?”
“Ten.”
“More like one in ten thousand. It takes years to make a medicine. Patents protect the idea so no one can make the same medicine. The companies that make them have to pay for how long it takes. That’s why medicines cost so much. Patents last for ten or fifteen years.”
I kicked my legs against the front seat. In ten years, I would be nineteen, almost twenty – unimaginable.
My dad rubbed his right eye as he drove. Behind it, a tumor lazily mitosed to the size of a golf ball, but we wouldn’t know for another year. We were still safe and innocent. After my mom’s breast cancer diagnosis, we thought we’d put in our time.
Years later, when I googled my dad’s name, I would find the phone interviews from that New Years Eve. “A billion-dollar drug,” he said, “a blockbuster.”
The drug was Humira,1 bestselling drug of all time by revenue and second-bestselling in history. Made originally by Abbott Laboratories, Humira was the third TNF inhibitor approved to treat rheumatoid arthritis. Now approved for nine other indications including Crohn’s disease, psoriasis and ulcerative colitis, Humira treats autoimmune disorders, where the body’s immune system begins to attack its own cells. Although not a first-in-class drug, Humira’s success lies in its delivery system; rather than requiring biweekly injections at home or monthly two-hour infusions at a doctor’s office like its competitors, Humira’s autoinjector system allowed patients to treat themselves at home bimonthly. Even now, two decades later, Humira ads are ubiquitous on TV and in magazines, showing people doing wholesome things, talking about the wonderful improvement Humira has provided in their lives, before a voice-over rattles off the FDA-required list of common adverse events.
In 2003, the first year of Humira’s approval, it was prescribed to over 50,000 patients. For those suffering from delibiliating autoimmune disorders, Humira is a miracle drug. Unlike its predecessors, Humira not only clears symptoms, but stops inflammation at the source, slowing disease progression and drastically improving quality of life.
* * *
By 2012, my dad’s cancer had metastasized from the tumor behind his eye to his spine, dark lesions mottling white bone, and even if we never spoke of it, I knew his time was running short. As a freshman at an Ivy League school, I was pummeled into an unrecognizable pulp by rigorous science courses, the cutthroat environment, and terror about what was going on at home, and I begged my mom to let me stay home for the next school year. I wanted to spend the remaining time he had left with my dad, and spare myself the disaster of another difficult year.
“What are you going to do, stay home and pander to him?” my mom demanded when I asked. So I returned to college, unsure if he would survive until winter break, my grades tanking from stress. Every semester, I faced unbearable uncertainty as my dad was admitted to the hospital for chemotherapy, with scans revealing more metastasis and lesions that refused to heal. When I returned to college after winter break of my sophomore year, my dad beginning his fourth week of hospice care, I knew I wouldn’t see him again.
“You’re going to be okay,” he said, as I leaned over his hospice bed,
1. Humira is the brand name of the original adalimumab monoclonal antibody.
trying not to cry as he cradled my shoulders. As I boarded the plane, I didn’t know who I was leaving for – my dad to pass peacefully, or my mom, who didn’t seem to want me at home. I sure wasn’t leaving for myself. He died four days later, ten thousand miles away, while I stared at a biochemistry presentation about amino acid structure.
My dad’s death ravaged my life like a tsunami. I couldn’t go home; that much had been made clear. I struggled zombified and numb through my courses, my body a phantom limb. I felt more alone than I’d felt in my life, treading water in an ocean of loss and emerging adulthood, a continent away from my family, emotionally distanced from my friends, trapped in my capsule of grief. I felt alien in college surrounded by students whose concerns seemed so different from mine that we might as well have lived on different planets.
After a year of numbness came wracking pain, which left me sobbing in the back corner of the library stacks, mourning my dad, who would never exist again, and also, the years of college I’d squandered, the dreams I’d never realize. By the time the grief began to fade, the summer of my junior year, my grades were shot and I felt as though I had wasted my time. I had made no self-discovery, built no intellectual self. I had no fondly remembered late nights or risk-taking. I would never go to medical school or get a PhD. Part of me blamed the sciences, their rigor, elitism and sexism, and some of me blamed Brown and the way that values seemed so skewed in the Ivy League. But mostly I blamed myself. I hadn’t been strong enough to bear the burden of my dad’s illness the way he had. He had believed in me, but I wasn’t the person he had believed I was.
When I graduated in 2015 and walked out of my college chemistry department, diploma in hand, I swore I would never return to the sciences. I had started a novel the spring of my junior year, and it had become the most important thing in my life. Once I accepted that I would never go to medical school, I ventured forward on a new life, where I was a writer, where creativity reigned. After all, how meaningful was it to go to medical school or become a scientist? To become bound to work in all of its life-sucking intensity? After my dad’s death, life felt short and fragile, a long run in the sunset or a midnight conversation with a friend more important than a few more points on an exam or an experiment. I had been focused for so many years on making responsible decisions that felt as though they had gotten me nowhere, now I wanted to pursue the things I loved.
“Espera hasta que estas retired,” my dad said whenever I talked about pursuing a career outside of the sciences. But waiting until you’re retired doesn’t work if you never reach retirement, and after my dad died, waiting felt more precarious than writing.
After college, as I took tentative steps towards becoming a writer, I wandered into the pharmaceutical industry accidentally: a part-time job writing website material and manuscripts for a pharmaceutical startup. I’d never considered joining the industry like my dad. I’d wanted to be a doctor since I was in middle school. But when I got that first job in pharma, drug development was comfortable, like slipping into a hand-me-down sweater. I had already heard so many of the words, knew what the daily reality looked like. And pharmaceuticals had much of what drew me to medicine in the first place: biochemistry, cellular interactions, the knowledge I was helping patients. In hindsight, it was ridiculous that I had never considered the industry before. The desire to go into a different career field than my dad had blinded me to an industry where my skills had value.
I applied to medical writing internships in the winter of 2018. By then, I was halfway through a Master of Fine Arts in Creative Writing in Fairbanks, Alaska, desperate to secure a job after graduation. I was living in a dry cabin (no running water), off a dirt road nestled in a boggy stand of black spruce, birch and melting permafrost, with a run-down car, a nearly empty tank of number 2 heating fuel, and winter on the way. My first year of grad school, I lay awake at night wracked with anxiety, mind circling. I would never get a job. Was I even a good writer? Had I given up everything I’d worked for my entire life, for another failed career? That spring, I set a research plan – find a day job.
My Google searches turned up internships at large drug companies – Merck, Pfizer, Seattle Genetics – to me, household names. My dad had spent eighteen years in the pharmaceutical industry, the majority of my childhood. He’d worked long hours, but in exchange for his evenings and weekends, the companies took care of him. There was always money for raincoats and dentist appointments and tickets to fly my Nonna up from Mexico. Working for a drug company could do the same for me. And the life of adventure and precarity I’d sought out after my dad died had begun to catch up with me. Where I had once craved risk, now I longed for security – if not emotionally, then at least financially. I couldn’t replace my dad, but I could provide for myself what he had once provided for me.
In the summer of 2018, five years after my dad died, sixteen years after Humira’s approval, and five years after its original patent was due to expire, I encountered the drug again. I had reached that future self that I could not imagine as a nine-year-old. In the years since Humira’s approval, Abbott Laboratories had split in half and become two companies – the original Abbott, which focused on medical devices, nutrition and generics, and then AbbVie, which 135 encompassed the riskier, development wing of the business, including Humira. When AbbVie’s medical writing internship appeared in mid-February, I didn’t want to apply, but I forced myself. There weren’t many medical writing internships to choose from and I had to stack my odds. Most likely I would never hear back. Then the interview request came, first from a midsized biotech company in Boston, then from AbbVie.
I was too relaxed, cavalier even, during my AbbVie interview. I didn’t want to work there. Five years after Humira’s approval, my dad had left Abbott and the pharmaceutical industry behind for a job in a different industry, half a world away. He was frustrated by Abbott, and an industry that had ventured too far from the original vision of using science to help patients; he’d come to see it as driven by ego and profit.
“Humira comes off patent soon,” he said, reading the news of Abbott’s split online the winter before he died, sitting in his chair, swaddled in sweaters and sweatpants, oxygen tank to his right, nasal cannula resting in his nostrils. It was December of 2012. Ten years, almost to the day, since Humira was approved. “The CEO’s going with Abbott.”
I understood the implication. When the patent would lapse, with it went Humira’s revenue. Without a new blockbuster drug, or more likely, a handful of less profitable drugs, AbbVie would struggle. My dad didn’t have much faith in AbbVie’s survival.
My offer came in late March. If I wanted it, I had a job in Abbott Park, Illinois that summer. I hesitated to accept. After my dad’s choice, I didn’t want to work for AbbVie, and working full time in the fast-paced, high-pressure pharmaceutical industry seemed to reject the values I chose to live by after he died – art over science, time over money, life over work. But the pay was $26.50 an hour and AbbVie was paying my round-trip ticket from Fairbanks to Chicago and my housing costs for 12 weeks. I decided to go. I would see if I could balance science and writing, if I could have a demanding job and still build a life.
I arrived in Waukegan in the swell of mid-May heat, the blocky, rectangular buildings of the corporate campus against the night sky. I’d passed the campus hundreds of times in the three years my family lived in Illinois, a ten-minute drive from Abbott headquarters. We didn’t last long in Massachusetts after Humira’s approval, and I spent the last two years of middle school and my first year of high school in Chicago’s Northshore suburbs. Those years had been a time of innocence, when remission seemed possible. When we still believed my dad might survive.
I sweltered in my jeans and boots as I lugged my suitcases, one filled with books, the other with five professional outfits, across the patio of the hotel where AbbVie was housing me and a herd of 90 other interns between the ages of nineteen and thirty for the summer. A yeasty smell hung in the humid air: Abbott’s production sites to the west of us, churning out antibiotics from mold blooms. In my hotel room, I filled a bath and lay in the water, staring up at the ceiling. I was three thousand miles away from Fairbanks and my dry cabin; I hadn’t taken a bath in a long time.
On Monday, I perched at the edge of my seat on the company shuttle into work, the Abbott sign blinking on its high pillar, a blue squared “A” with the ends curling over itself. My dad had made the same approach countless times in the years we’d lived in Illinois: driven his silver station wagon through the gates, flashed his badge, parked, and walked to his office in one of the mocha-brown brick buildings. Somehow, he’d managed to carry on with his life, even though, in the years after Humira’s launch, it had changed drastically. In the summer of 2004, a year and a half after Humira’s approval, he was diagnosed with cancer, a rare stage 4 head and neck squamouscell carcinoma behind his eye. By the time he was correctly diagnosed, the tumor was already the size of a golf ball and had spread into the bones of his face. He was 45 years old.
My dad was fortunate; despite the size of the tumor, he hadn’t lost his sight when it was removed or during the radiation treatment that followed. But the tumor recurred in the summer of 2006, this time in the lymph nodes in his chest and along the upper lobes of his lung. As Humira was approved in the EU to treat rheumatoid arthritis, then in the United States to treat psoriatic arthritis and Crohn’s disease, my dad pressed on with his career. He worked remotely from the University of Chicago Hospital’s eighth floor, sending emails and doing phone meetings from a hospital bed, an IV infusion of chemotherapy embedded in his arm, only to return to work the next week. My dad treated each new diagnosis as though it were simply another delayed enrollment date on a clinical trial, or another failed experiment. The scientist in him knew how to embrace uncertainty while pressing forward, one watchful eye on the data. He never seemed to doubt himself, even if I did. At night, fear tugged at me every time his cancer recurred, his death, it seemed, creeping ever closer.
Rain poured in sheets from a gunmetal sky as I and a crowd of interns in raincoats and professional clothes filed out of the shuttle, avoiding puddles covered with skeins of grease as we walked towards the entrance of one of Abbott Park’s buildings. I knew some 137 of what had happened in those buildings during the years my dad had worked there. After Humira’s approval, infighting mired the highest levels of Abbott, and in 2006, a few months before my dad’s first cancer recurrence, his boss resigned. Abbott was a midwestern company, like Ford in Detroit, but bankrolled by pharma’s profits and resilience to recessions. Multi-generational employees were common, the pension scheme was generous, and Abbott lifers were the norm. My dad and his boss were newcomers.
After his boss left, my dad’s job was sidelined, his position slowly taken over by long- time Abbott employees as his cancer metastasized and his illness, in his opinion, was used as an excuse to take away a job he loved. When the cancer spread to his lungs in the fall of 2007, Abbott asked if he wanted to be moved back to Seattle, his job responsibilities significantly reduced. He refused; by then, he was already interviewing for his next job at a Swiss agriculture company headquartered in Basel. In 2008, he resigned from Abbott, had the lower lobe of his left lung removed, and flew to Basel to begin his new position, my mom and brother and I to follow at the end of the summer. He didn’t tell his new company about the lobe removal; even they had initially turned him down for the role because of his illness.
I wasn’t expecting to encounter Humira at Abbott Park, but I did, still on patent, still comprising the bulk of AbbVie’s revenue. In the years since Humira’s approval, it had been approved to treat nine separate indications in 75 countries, and was protected by 132 patents, so it was nearly impossible for competitors to manufacture generics. The patent was extended to 2023, nearly ten years longer than the original patent my dad explained to me in the car when I was little.
As we entered the sliding glass doors of Abbott Park’s building, a model of Humira’s disposable auto-injector delivery system greeted us from its place of honor, blown up 1,000 times, encased in plexiglass, and mounted to the wall. When I was growing up, the true-to-size model had sat on the desk in my parent’s bedroom. Despite approval of other important drugs, Humira was still AbbVie’s most profitable product, and its greatest legacy.
“The biggest challenge facing AbbVie in the next five years is to replace the revenue stream for Humira when it goes off patent. You will all be an important part of that effort,” the HR person said during our orientation. Around the room, young faces stared back, stiff above suits and blazers. Pennants from midwestern state schools where AbbVie recruited hung on the walls. Those of us interns who were offered jobs would become the next generation of Abbott. If I was hired, I stood to become the type of person my dad despised: a 138 lifer, a second-generation AbbVie employee. There was nothing my dad hated more than nepotism and corruption, problems he’d seen as rampant in Mexico.
“I’ll pay for your education, but I’ll never help you get a job,” he always told me. I wondered what he would have thought of me, here, listening to HR orientation at AbbVie. For years I’d felt I had failed him; when I’d given up on medical school, when I couldn’t pull up my grades in college. Now, I didn’t feel that way anymore. For the first time since he’d died, I felt I had realized his last words to me, that I would be all right, even if I never knew what he thought of the path I had chosen. Would he have warned me about company politics, and about navigating the egos in Big Pharma, frustrated by an industry that he had come to see as motived by entitlement, arrogance and greed? Would he be disappointed, roll his eyes and sigh and ask ”Porque?” Would he have seen me as repeating his own mistakes too, as being caught up in the glitz of an industry that would never love me back, no matter how much of myself I gave?
But I didn’t need his advice or caution; the life I’d watched him live in the industry was as much a promise as it was a warning. When he was dying, he’d taken his work laptop with him to the hospice, and spent evenings writing detailed emails to his successor, laying out his five-year strategic plan for research. In a morphine haze, he started telling his colleagues who came to visit him that he would be back to work in a few weeks. He’d always used pain as his metric for the severity of his cancer, and, with the high dose of morphine that dripped through the IV in his arm, he thought he could live forever.
“You’re never going back to work!” my mom snapped, ten days before he died, then demanded he give her his laptop. I’d only seen him cry once before, the day his dad died, and this was the first time I’d seen any outward grief about his illness, and its inevitable conclusion. That moment played like a reel in my head whenever I took stock of my values. I respected my dad more than anyone else, but I never wanted to be the kind of person whose family had to take their laptop away from them in hospice. When my time came, I wanted to be able to let go. To forget about work, to grasp what was truly precious. But now, here I was, my first day in the pharmaceutical industry, waiting for IT to issue me a laptop of my own.
I followed my intern mentors – a pair of medical writers named Kyle and Marianna – across the campus to a building nestled in the far back of the complex, butting up against the acres of artificial Midwestern prairie that ringed Abbott Park and shut out the noise from nearby highways. I would spend the summer writing regulatory 139 documents: development reports, an investigators’ brochure, part of the safety and data reporting required to bring a drug candidate to market. Upwards of forty medical writers were employed full time at AbbVie, along with a number of contractors. Each document in the development process was reviewed by a team of specialists from different subject areas: safety scientists, toxicologists, statisticians, regulatory affairs experts. A single development team for a single document could include forty people, mostly MDs or PhDs. Over three months, my documents came to eighty pages each in length. Other co-workers’ documents would take six months to write, at hundreds of pages long.
Medical writing is only one portion of the complex process of drug development. It takes a village – or perhaps an army – to bring a single drug to market. The precursors to a drug’s life have occurred for decades – the basic scientific research required to decipher biochemical and cellular processes to understand the mechanisms of disease and elucidate potential drug targets, and the chemical and biological techniques used to synthesize potential drug candidates. My dad had contributed to this work for Humira and other immunology drugs as a graduate student, one of the thousands of unseen scientists that create the scientific foundations upon which drug development occurs. This work goes on far from the public eye; it will be decades before any of this research will mean anything tangible for patients, and what is discovered on the bench hits the market.
In the lab, a potential target for a drug – a protein on the surface of a cell, a receptor for a specific chemical – is identified. This is the beginning of the pre-clinical phase, the part of drug development that occurs before drugs are tested in patients. Potential drug candidates, sometimes numbering in the thousands, are screened against the target in vitro and in vivo, until a lead compound – or the compound that shows the most promise as a drug – is determined.
Once a lead candidate is deemed safe enough by regulatory agencies to test in human subjects, it moves ahead into clinical trials – phase 1, phase 2 and phase 3. These studies start small, enrolling only a handful of participants and occurring over a few months. By phase 3, a study may enroll a few hundred participants, and occur over multiple years. At each phase, potential candidates are eliminated, like contestants in a pharmacological beauty contest, judged on safety and efficacy, the two pillars of drug approval. In the final phase of trials, drugs are compared to existing therapies used to treat the same conditions – if these exist – and must prove a clear benefit. A final approval is a rare occurrence; when Orilissa, an endometriosis drug, 140 was approved during my internship at AbbVie, my supervisor was nearly in tears at the company meeting – this was her first approval after twenty years working at Abbott and AbbVie.
The costs and time commitment required for drug development are astronomical – a single drug costs 2.6 billion US dollars to bring to market, over the course of 10 to 12 years. What’s not included in these costs are the costs of the failed drugs, those that are struck from the pipeline, those that the general public never sees. A drug can be pulled from testing at any time; in my first medical writing job after AbbVie, I often found myself writing up clinical study reports for drugs that failed during phase 1 or phase 2 trials, the results of their studies to be filed away in the graveyard of failed candidates at the FDA.
Throughout the summer, I marveled at the scale of the process, as I hunted down data sets from statisticians and emailed reviewers, as I wrote up new text based on data and read through each ninety-page document time and time again for internal consistency, as I led the team through review meetings under the watchful direction of Kyle or Marianna, the document beamed up on the screen in a conference room as the team dissected my sentences to convey the optimal message. I knew that long hours would be inevitable at times, but I was determined not to bring work home with me. I wanted to see if I could maintain a balance between my day job and my life.
The longer I worked at AbbVie, the more I found that I enjoyed medical writing. The work was challenging in all the right ways: fastpaced, people-oriented. I needed to be a good scientist, as well as a good writer, in order to succeed. I enjoyed the leadership aspect of the corporate world, and the constant drip of new projects kept me interested. And drug development was exciting. I enjoyed seeing the data, fresh from the trial. Where bench science was often excruciatingly slow, here I was on the cutting edge of complex science that had been years in the making and was close to making an enormous impact. There was a solace in knowing that I was part of something far greater than myself, an enormous process that few people would ever see, but that would benefit many. I began to see why my dad had loved it so much that he had let the pharmaceutical industry become his life. For a scientist used to the slow dribble of lab work, the galloping speed of the pharmaceutical industry, the volume of resources thrown behind research projects, and the measurable future impact on patients, it must have been like a dream.
My dad was never far from my mind that summer. He lingered, among the halls and conference rooms of AbbVie’s campus, in the reams of data on the Humira registry, in the blood streams of the pa- 141 tients who auto-injected it every two weeks. The air hummed with humidity and air-conditioning and the soft swish of cicadas, and all the weight of the conversations my dad and I never had, the questions I never thought to ask. Why had he kept working through all the years of his cancer diagnosis? What had driven him to work the way he had at the end of his life? Had he worked out of a love for science, or was he driven by darker motives, by ambition, or greed, or a desire to succeed and prove himself above all else?
“He loved us, but he loved his job,” my mom always said. The implication was clear.
But maybe for my dad, loving his job transcended this dichotomy. He had a calling and a love for science that drove him, no matter his condition and no matter his illness. And on a practical level, loving his job had gone along with loving his family. My brother and I were 8 and 11 when he was first diagnosed. He had loved his work, but he had also worked for love, to support a young family, to save for a future where at any moment we would have to live without him. Without his job, he would have lost his health insurance and been unable to afford his cancer treatments. Maybe his motives were innocent. Even if the data pointed in one direction, the overall survival of a patient with stage 4 recurrent cancer was exceedingly grim, no matter their will to live; still, in his forties, dying was unthinkable.
I wasn’t sure of my motives either. What had brought me from my cabin in Fairbanks to AbbVie, why I had traded boreal forest and tundra quiet for asphalt and artificial prairie? I knew I wasn’t chasing a love like my dad had. But I was chasing something: a day job, a way of building a life for myself as a writer, financial security. But why did I choose medical writing over the salary of another profession, like a scientific writer at a university or a high school teacher? I wondered if the long hours in pharma were truly worth the mental stimulation and excitement working on the cutting edge of drug development provided, if I loved science enough to return to it. When I gave up on medical school, I told myself that my desire to go was vain and driven by ego, a story to make the loss bearable. I, too, had loved science and loved medicine; I wouldn’t have returned if I hadn’t. I, too, wanted to do something meaningful, and survive in a country where life had only become harsher and more difficult, and where a good corporate job could buy protection over all else.
In times of difficulty, work had always been my solace, and my escape. When my family first moved to Illinois, outside of Abbott Park, I had become obsessed with school, throwing myself into work, and my fantasies for the future. School had become my escape from my dad’s illness, and what I knew was coming. I knew too much about 142 cancer already. When my mom was first diagnosed with cancer my dad had explained everything on the couch in the living room of the house in New Jersey, all of us still in our pajamas.
“The good news is that your mom is in very early stage 2. You really only have to worry about cancer when it’s at stage 3 or 4, or when it’s metastasized, or when it’s in lymph nodes or organs or bones.” He gestured to the PowerPoint slides he’d made and printed in full color at work. A diagram of a breast, halved open like a grapefruit, exposing the fleshy pink and yellow tissue, the inside mottled with tubes like cauliflower.
But for my dad’s cancer diagnosis, there’d been no PowerPoint, no explanation, and no reassurance. No data to soothe, no likely favorable outcome. We’d never spoken about the severity of his diagnosis as a family, but he’d revealed the severity of his stage 4 diagnosis years before, in an attempt to reassure us about my mom, and I hadn’t forgotten.
“What is it like to have your dad die?” I asked a girl in my class in sixth grade, whose dad had died the year before. My dad had just broken his jaw while chewing on a sandwich, revealing another tumor inside. I had ceased to be a child in that moment.
“Nothing will stop me, not even terminal cancer,” I wrote in the front of a notebook the summer of 2006, before starting eighth grade.
“Terminal cancer? What does this mean, terminal cancer?” my mom shouted when she found it.
I told her I didn’t know, but that was a lie. I knew exactly what terminal cancer meant, as well as she did, but I had been afraid of her reaction. I’d suspected what was coming, even if I didn’t know when. I never spoke of it again; naming the possibility of my dad’s death was unwelcome, at least to my mom, and I didn’t want to talk about it to my dad. For him, I wanted to be courageous. I wanted to bear the burden of his illness the same way he did: in silence, with unstoppable drive. Perhaps my decision to join the pharmaceutical industry was the late show of that; by taking the job at AbbVie, I was proving to a man who had been dead for five years that I would in fact be fine without him.
“We genuinely do good for patients,” my supervisor said, when we spoke briefly about the moral issues inherent in the pharmaceutical industry. She wasn’t wrong. My life would have been drastically different without modern medicine; chemotherapy had extended my dad’s life by years, and certainly saved my mom’s. I was far more productive and happier after I was prescribed medication for my ADHD in college and, later, Prozac for depression. But for each check deposited into my bank account, each long, hot shower I took 143 in the bathroom of my hotel room, I couldn’t help but think about the human cost of drug pricing. About those who lost their life savings or went into debt for cancer treatment, about those who couldn’t afford Humira.
My summer of Humira was the key to my success that last year in Fairbanks. It paid for the oil changes in my car and the $600 fill-up of heating fuel for the winter, the meals out when I didn’t have time to wash my dishes as I worked on my thesis. The internship gave me time and headspace that last year. I no longer lay awake at night, terrified of the future. I felt a sense of security in the knowledge that health insurance, a retirement account, a well-paying job, was within reach.
But the truth was that Humira had been the key to my success for years. Humira paid for the houses in towns with good public schools and high property taxes, the empty Saturday afternoons in high school where I studied for exams and worked through SAT books. Humira paid for college and for eight years of my dad’s cancer treatments and, when that cancer finally killed him, it paid for the monthly pension payments that Abbott Laboratories sent my mom. Humira was our American dream: our Medicare, our pension, our student loan forgiveness. Where the steady privatization of public services and social safety nets had failed the American public, the pharmaceutical industry had not failed us. Whatever my dad had set out to achieve when he left Mexico – safety, education, opportunities – he had succeeded by joining the pharmaceutical industry. Now, the security my dad had given me seemed in reach for me to create for myself.
When I considered going to medical school again, thinking it was a better way to do good in the world, a physician friend said to me, “Don’t think you’ll avoid the moral hazards of the field if you’re a clinician. Health insurance and hospitals put up all kinds of barriers to the type of care you can give.” Pharmaceutical pricing was only one factor in the American healthcare system, hospital systems and insurance companies also at fault. I couldn’t escape moral hazard, no matter what I did.
For all of the good it has done, Humira has become one of the most controversial drugs because of its cost. In 2019, the House Oversight Committee announced an investigation of the 12 drug companies responsible for the 19 highest-priced drugs, including AbbVie. By then, a year on Humira cost $72,000 without insurance. When AbbVie’s original patent was due to expire in 2017, the company had already won its legal battle to block the sale of less expensive generics. By then, Humira had long paid for itself; many of the hurdles facing the drug’s march to approval had already been cleared. There 144 is no reason for a drug as old as Humira to cost as much as it does, even with the cost of research and development. The only explanation is corporate greed, and a desire to serve profits and shareholders over patients. This is what my dad would have warned me about. For all the focus on science and patients, no one could escape the desire for profit.
I’m still in the pharmaceutical industry. I write regulatory documents for a living now, the job I realized I wanted as an intern at AbbVie. I never did get to know my dad as an adult, and he never got to know me; there are massive swatches of my life he never got to see. Sometimes I imagine him in his office armchair on a Saturday. He’s poured himself a beer, and it rests beside him on a coaster. His laptop is propped on his lap, and he hunches over it, squinting at me from behind the cheap reading glasses he buys at Walgreens. For my dad, it was always the people he worked with, and the science, that mattered to him the most. I pull up a chair across from him in the Saturday quiet; I pour myself my own beer. We are both here, in our own overlapping lives; the same place, the same time, the same people, the same companies, the same drugs, the same science. We collide for a second, like electrons in orbit, our lives butting elbows, and then we are spinning, through time and space, before we once again are gone.
Heather Aruffo’s work has appeared in The Southern Review, The Laurel Review, and Best Debut Short Stories 2021.