When Should a Prescription Drug’s Side Effects Count as a Disability?
Credit to Author: Sarah Scoles| Date: Mon, 11 Sep 2017 13:00:00 +0000
On the afternoon of June 27, 2014, a fire alarm inside a Drexel University building went off. Min Jung, a student in the Social Justice and Health Policy doctoral program, was taking the comprehensive pass/fail exam that would determine whether she would be allowed to continue in the program. Would the time spent standing on the sidewalk, watching the alarm’s strobes flash, cut into allotted exam hours? she wondered. Should I leave? She stayed in her seat.
The Office of Disability Services had given her extra time for the exam, an accommodation for a central auditory processing deficit, a disorder that leads to difficulty processing sound. She didn’t want to lose any of those allotted minutes. So Jung powered through more test questions until the alarm subsided 30 minutes later. It didn’t seem promising, but she was hopeful. She had a 3.7 GPA. She was a teaching assistant. She knew her stuff.
She waited two months for the verdict on whether she could stay in a program that would allow her, someday, to do her dream work: studying prisons and why people keep ending up in them.
Then the gavel came down.
She had failed, just barely. The exam has two parts, with Part One having two sections. She had passed Part Two, and received a 75 and an 80 on the respective sections of Part One (vocabulary and essays). But she needed an average of 80 on those sections to remain enrolled. Administrators beamed a light from the terminus of this tunnel, though: Jung could try one more time.
Good news, right? Only sort of.
Most people probably have no idea what their baseline is, vacuumed of influences.
In the months since the first exam, Jung’s health had degraded. It wasn’t just that she suffered from fibromyalgia, which she did. According to the Mayo Clinic, the disorder is “characterized by widespread musculoskeletal pain accompanied by fatigue, sleep, memory and mood issues.” And although no one fully understands the causes of those symptoms, researchers believe the brains of people affected by fibromyalgia process pain sensations differently from those who aren’t affected by fibromyalgia.
The disorder itself, says rheumatologist Roland Staud of the University of Florida, who researches the condition, doesn’t seem to directly affect cognition much. “The main differences that have been detectable were found in the context of multitasking,” he says. “When individuals had to do several things at the same time, the differences between the normal controls and participants became strong.”
To treat her fibromyalgia, doctors had first prescribed Jung Pfizer’s Lyrica but had then switched her to Fetzima, the dosage of which they were still titrating but which stood at 40 milligrams when she sat for the exam. Fetzima is made by Allergan, and technically isn’t approved for the treatment of fibromyalgia. The company lists its side effects as largely physical—things like heart palpitations, abnormal bleeding, nausea—but possible side effects also include manic episodes. Lyrica’s most common side effects include dizziness, blurry vision, sleepiness, and trouble concentrating: a cognitive effect that Jung and her doctors claim both drugs had on her.
If you can’t concentrate, it’s hard to take long exams. And under the Americans with Disabilities Act (ADA), pharmaceutical side effects like this are considered a disability, and should be treated the same as dyslexia or depression by employers and universities. With this knowledge and doctors’ notes attesting to her impaired cognition, Jung went to the program director and the Office of Disability Resources and asked for special consideration, during her exam do-over, that she believed to be fair under the law.
They disagreed.
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Jung’s situation brings up ethical issues beyond tests. When everyone’s abilities are subject to different stimulants or depressants, among other types of drugs that affect the brain, all the time, how impaired is impaired enough to matter? And how much does it matter? People take all kinds of uppers and downers, and also get nine hours of good sleep (or five hours of bad), drink coffee, or need Benadryl to survive April. Most people probably have no idea what their baseline is, vacuumed of influences.
On the opposite coin face, universities must contend with which kinds of cognitive enhancement are permissible before it’s considered cheating—if it’s ever cheating. People publicly ask each other, “Should students be allowed to pop Adderall?” But they rarely talk about the opposite problem of how best to judge a student’s performance when they’re cognitively de-hanced.
To make a sports analogy, regulators can take away a swimmer’s gold if they test positive for steroids. If said swimmer takes cold medicine, or is just sick, however, they don’t get a handicap. Should it be the same for pursuits of the mind?
Jung, now 41, claimed her medication caused her to be unable to sit and concentrate on a test for more than an hour at a time—so did three of her doctors. Jung wanted to retake just the portion she had failed—vocabulary—rather than both sections of Part One. After all, the test was already split into two parts, and the department’s rules didn’t require her to take the second part again. She wrote to the program director, Darryl Brown, to suggest this solution, with a note from her primary doctor, endorsing her plan. She followed that up with more doctor documentation.
But the disability office eventually ruled that her request was not a “reasonable accommodation,” the standard required under the law. According to the ADA, “reasonable” means the adjustments don’t “fundamentally alter” the curriculum or level an “undue burden” on the school. All other students had to pass both sections of Part One at once, their simultaneous scores averaged together. Jung, they said, could use adaptive technology (like voice recognition and text-to-speech software), get extra time, and take 10-minute breaks every hour.
Staud, the Florida fibromyalgia expert, says it’s hard to determine the actual effects of Jung’s medication. And if determining a drug’s consequences is difficult, that means it’s also hard to determine which educational accommodations are reasonable. The same goes for the disorder itself. “You can have fibromyalgia that is very different from another person’s fibromyalgia,” Staud says, adding that clinicians haven’t spent a lot of time characterizing the cognitive impacts of drugs like Lyrica and Fetzima. And even if they had? Because fibromyalgia has different symptoms among individuals, and the mileage of medications vary for each patient, the aggregate data on side effects “may or may not fit this individual person,” says Staud. The best way to learn how Jung experienced the disorder and its treatment and the consequences of both for her brain, he says, is to ask her. And then, more quantitatively, to compare her cognitive performances before and after the medication.
“My condition is not one of merely being in a modicum of pain that can be relieved by a short break,” she wrote the Office of Disability Services. “As the letter from [her rheumatologist] Dr. Shenin states, I have ‘significant difficulty taking long examinations due to worsening pain which results in poor concentration. In addition to pain, certain medications [I am] on can also negatively affect [my] concentration over multiple hours.'”
Still, despite her own protests and assertion that Drexel’s accommodations weren’t enough, she took what she could get. “It was my understanding that I had to pass comps before the second year, and the clock was ticking,” she says. “I didn’t have time to extend this argument.”
And then she took the test.
“I think as an institution we had an obligation to help Min through her crisis.”
Her second-try results came in the form of an email, just the statement that she’d passed the vocabulary section this time but failed the essay portion. She would have to leave the program, and scrap her whole professional plan, for the time being.
It’s unclear how many students find themselves in Jung’s circumstances: seeking accommodations for side-effect difficulties. The ADA doesn’t release statistics this detailed. A spokesperson and media affairs specialist for the Department of Justice, Lauren Ehrsam, said that any numbers the department was able to release would be on ADA.gov, although those numbers don’t get this granular. But a perusal of testimonials and posts on subreddits like r/ADHD, r/AskDocs, and r/Anxiety, which together have around 243,000 subscribers, reveals concerns like Jung’s: people don’t just worry about how an illness will affect their secondary schooling; they also worry how trying to treat it could exacerbate the problem.
“I am a college student and was on [L]amictal [a treatment for epilepsy and bipolar disorder] alongside lithium, but have recently been tapered off the lamictal due to cognitive side effects,” wrote redditor GardeningGoat. “For example, I could no longer type my notes fast enough in class, follow along with lectures, think of the words I would like to use in sentences, and stuff like that.”
Another redditor, Multipolar, wanted to drop their bipolar medications because of academic concerns. “I’m going to flunk out of school if I can’t perform well, I couldn’t even study at 6pm two days ago for a test because I suddenly spaced out and fell asleep,” they wrote. “Please help me here. tl;dr: I’m on a lot of medicines and I’d like to have them removed because I can’t stay awake to study, and the side-effects are killing me.”
Jung appealed the office’s decision a month later. “Both medications had the unfortunate side effect of affecting me cognitively, in that my memory and ability to concentrate were negatively affected,” she said in a statement. “This was only discovered about this first medication [Lyrica] over a series of months, which is why I was taken off that medication and put on a different medication [Fetzima]. Unfortunately, not only did that medication have the same effect, but the negative cognitive effects were worsened, and this was the medication I was on during the second exam.”
She tried a little logic: If she could do so okay on the exam, and pass all of its parts on separate occasions, while on meds, didn’t that mean she had the wherewithal—when not pharmaceutically impaired—to continue in the program?
Dennis Gallagher, interim chair of the department at the time, helped evaluate parts of Jung’s exam. She’d worked for him as a teaching assistant. Gallagher saw her as a disciplined, committed student whose depth of thought wasn’t apparent in her test performance. Drexel shouldn’t have kicked her out, he says. Instead, the school could have offered her medical leave to get her health back in order. To be fair, the school did make accommodations after the first exam, and offered leave, but Jung says she wasn’t aware at the time of how bad her brain was behaving.
“I think as an institution we had an obligation to help Min through her crisis,” Gallagher says.
There’s an issue Matrushka-dolled inside that one: Is it a university’s job to judge a student’s inherent, unaltered abilities, and how much should that judgment count? The ADA accommodations are meant to let a student’s abilities shine through the gauze of whatever symptoms they’re experiencing, to give them equal footing with “non impaired” students.
But when students give themselves a leg up—with Ritalin, Adderall, Modafinil, Nootroo—in most cases, their inherent, unaltered abilities remain unconsidered. Duke University is one of the only schools in the US that bans “the unauthorized use of prescription medication to enhance academic performance” as an academic honesty infraction.
And yet a 2014 study presented at the Pediatrics Academics Societies showed that up to a fifth of Ivy League students had consumed so-called “smart drugs” like Adderall and Modafinil, medications meant to increase concentration, focus, connection-making—exactly the kinds of abilities Jung’s medication cost her. At a wider range of institutions, the number is more like half of that. At the same time, almost no institutions ban this behavior—in part because many aren’t sure it is cheating. After all, as professor of law and philosophy Nita Farahany (herself, ironically, at Duke) told VICE in 2016, “Is a student using neurofeedback cheating? Are nootropics cheating? Coffee? Or is it only cheating if they use prescription drugs?”
The bigger risk, beyond whether or not enhancement is cheating, is creating a world we don’t want to live in, says Nicole Vincent, a philosopher at the University of Adelaide who studies cognitive enhancement and responsibility, and is writing a book called Outsmarted: Cognitive Enhancement and the Unexpected Consequences of Emerging Technologies. If some students or workers use smart drugs to work harder and better for longer, everyone will have to work harder and better for longer (and probably take smart drugs) just to remain in play. And then because humans are humans, harder becomes harder, better becomes better, longer becomes longer. And soon, everyone is extremely productive and hates their lives.
“It is a problematic kind of scenario from my perspective,” says Vincent. And it’s for that reason that she encourages institutions—and countries, and their citizens—to think about regulations. “Don’t think of this as the government telling you what you can and can’t do,” she says. “Think of this as what you want to tell the government.” Namely, I don’t want to live in a world where the only option is Adderall. Problematically, though, lots of people take Adderall for real medical reasons, so who gets to determine at what point the pills are frivolous?
Besides, in that world, what happens to the people who can’t afford Adderall, or the people who, instead, have to take Fetzima? If a school levels the playing field by boosting students with pharmaceutical disadvantages, it may also be incumbent on them to end the be-better arms race, lest the field tip in the opposite direction.
“Part of me can kind of understand where they’re coming from, but most of me doesn’t.”
The lack of rules around enhancement means test-givers often evaluate students who operate above their natural level—refusing, in effect, to rule on what is natural, who we are, and what makes us us.
And then, of course, there are all the de-hancers and enhancers that a disability office can’t rule on. What if you have to take a test on the day your dog dies? Or the day your mom sends you a care package with notes about how great you are? Is there ever a “normal” day, when a person is their most “normal” self? Is “normal self” real? Probably not.
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Jung’s appeal didn’t work. The faculty members in charge of the decision claimed that she hadn’t made it clear to them how impaired she was until after she had failed both exams, although her doctors had submitted their statements in advance. Brown, the program director, did not immediately respond to a request for comment for this story.
She could have appealed the appeal, but she decided not to. “If I had won it, I would have been back in the school,” she says. “But it was clear the school didn’t want me. In a doctoral program, you can be miserable even when your school is supportive and you want to be there.”
If the point of a comprehensive exam is to prove that a student has the wherewithal to complete the PhD program, then the committee’s decision meant, effectively, that it didn’t believe that to be true in Jung’s case. And it felt comfortable making that judgment call from a knowingly impaired performance (to be fair, she agreed to perform while impaired), just as other committees feel comfortable making the opposite judgment for students with pharmaceutically-hopped-up focus.
“Part of me can kind of understand where they’re coming from,” she says, “but most of me doesn’t.”
And here’s the frustrating thing: A test that requires a student to sit in a room for a very long time and write on paper doesn’t actually reflect that student’s ability to, say, study the prison system. The real world, in case you haven’t noticed, doesn’t make people take tests. And yet, the gate into Jung’s chosen field came in the form of an exam unlike anything she’s likely to experience in the real world. Why do we put such emphasis on test performance in cases like this when there’s probably other ways of gauging likelihood of real-world success besides tests?
Perhaps because that’s what we’ve always done inside the ivory tower, even if it is a tradition in world full of bad traditions that need some alteration.
Jung still plans to pursue her study. When I asked what her research was she corrected me. “I’m still optimistic enough to use the present tense,” she says.
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