At first, social media was a way for Joshua Eyler, director of the Center for Teaching Excellence at Rice University, to process what was happening to his family. His wife, Kariann Fuqua, a non-tenure-track instructor of writing and communication at Rice, had been diagnosed with a form of chronic pain that erased her ability to so much as hold a pencil for any length of time, let alone maintain a sense of normalcy. So Eyler shared their story in a blog that caught lots of attention from fellow academics and ended up in the Houston Chronicle.
But last week, Eyler’s social media activity took a pointed turn when the couple’s insurance provider denied Fuqua an experimental but promising treatment. Since that time, the Twitter hashtag #forKariann has gathered lots of support and highlighted gaps in insurance coverage that affect faculty families even at elite institutions, as well the struggles of faculty members living with chronic pain.
“We’re about to launch into a formal appeals process, and it’s going to be a major uphill battle,” Eyler said in an interview. “So I decided to make this as public a battle as possible.”
On Christmas Day 2014, Fuqua woke up with arms so inexplicably sore that she’d visit the emergency room twice by the day’s end. A sensation she described as electric shocks soon moved to her legs as well. A doctor used the term “neuropathic,” but it took five months of suffering for an official diagnosis: idiopathic small fiber neuropathy.
Neither Fuqua nor her doctors know why she developed the condition, but in an interview she said the pain has turned her life upside down. It’s hard to for her to talk about, but she described her neuropathy as “a burning feeling and sort of an electrical shock feeling moving around in my both my feet and my hands.
“I don’t think people realize you use your hands for everything,” she added. “I can’t open jars, or sometimes it’s very difficult to hold a utensil to eat something. And I’m an artist and I’m not able to paint because I can’t hold a paintbrush or pencil any more. All of that is gone.”
Fuqua’s been able to keep teaching, reserving any energy for her students (she’s part-time now but is taking on a full-time position in the fall; currently, she's covered by her husband's insurance plan). But the condition has nevertheless impacted her ability to teach and mentor students.
Eyler wrote about how chronic pain impacted their respective careers last semester in the May blog that attracted national attention.
“I just tried to hang in there with my students, knowing that I was only partly there with them. The rest of me was back at home with Kariann,” he wrote. “Despite everything, she still found a way to teach her first-year writing seminar every Tuesday and Thursday morning at Rice. I would drop her off at the classroom door and pick her up again right afterwards. Even in the midst of agony, she made it a priority to help those students. Now that, folks, is courage. My wife is my hero.”
Perhaps the hardest thing for Fuqua is missing out on time with her 3-year-old daughter. Eyler’s taken on the bulk of the physical parenting responsibilities.
“She understands and can articulate that ‘Mommy is sick’ and ‘I can’t sit on Mommy’s lap today’ and ‘When Mommy is better she’ll be able to pick me up again,’” Eyler wrote of their child. He also noted how Fuqua struggled to secure pain medication while searching for a diagnosis. Some doctors, presumably concerned about prescribing too many painkillers in a time of increased federal regulation of such drugs, refused to offer them.
The actual diagnosis brought little relief, since there’s no definitive treatment for small fiber neuropathy. Like other chronic pain conditions, it suffers from a lack of research. That’s despite the fact that some 100 million Americans experience some form of chronic pain, and between 12 and 53 out of every 100,000 Americans develop small fiber neuropathy, said Steven Richeimer, chief of the division of pain medicine at the University of Southern California's Keck Medicine. The disease, which is thought to be an autoimmune disorder in which the body attacks small nerve fibers, remains something of a mystery.
“What are the triggers for small fiber neuropathy? We don’t know,” Richeimer said.
It's impossible to know how many academics in particular suffer from chronic pain. But many do, and the condition can greatly interfere with one's ability to teach or do research or otherwise work toward promotion.
A tenure-track humanities professor at a state institution who did not wanted to be named due to the "precarity" of her position, said the chronic pain she developed several years ago in some ways made her a more efficient worker, in that she needed to push during periods of better health. But over all chronic pain cost her, she said, especially in the "social capital" she said is necessary to advance in academe. Socializing after work was out, for example, she said. And so, consequently, were the “relationships needed to get the sane teaching schedule, to get the understanding when you are in the hospital and need to cancel class.”
In Fuqua's case, a few common treatments proved ineffective. But hope came this spring in the form of a plasma-derived immunoglobulin infusion designed to interact with the body’s autoimmune response. The treatment, commonly referred to as IVIG, is prescribed for a variety of illnesses, but it’s offered initial promise for a limited number of small fiber neuropathy patients. And it seemed like Fuqua’s best chance at a future beyond pain medication.
Until last Monday, when Aetna, Eyler and Fuqua’s insurance provider, denied the expensive, specialist-prescribed treatment on the grounds that it’s still experimental for her condition.
The news came as a surprise and a blow.
“We were going to try IVIG because we’d read about it and a number of medical professionals said it had done wonders for people [with my condition],” Fuqua said. “It’s just so defeating after trying so many things that didn’t work. And on one level I feel very sad but also very angry.”
Eyler, also angry, tapped the network of supporters he’s grown since May to launch something of a public shaming campaign against Aetna. He’s tweeting to Aetna throughout the day about Fuqua under the hashtag #forKariann, as are others.
So far, Aetna has offered Fuqua the opportunity to appeal the decision. But she and Eyler say the treatment is more effective the sooner it’s initiated, and that the outcome of any appeal is uncertain.
An Aetna spokeswoman declined to comment on the specifics of Fuqua’s case without her signing a written consent form, which she was unable to complete on Monday. But Aetna responded to Eyler on Twitter.
@joshua_r_eyler Great, we've sent an update so you know what we are waiting on. I'll send another update as soon as possible. ^CE— Aetna (@AetnaHelp) July 27, 2015
B.J. Almond, a spokesman for Rice, said via email that "While we are concerned for all our employees and their families, we do not discuss their personal medical or health details with the media. The university’s insurance plan has procedures through which employees can appeal coverage decisions."
Richeimer, at the University of Southern California, said Fuqua’s case is a familiar one -- even for people who think they have strong insurance plans.
“My clinic spends a ton of time filing appeals and trying to convince insurance companies that they tried the standard stuff and have to work on more aggressive treatments,” he said.
Anne Louise Oaklander, an associate professor of neurology at Harvard Medical School who has studied the effectiveness of IVIG on neuropathy on a preliminary, limited basis, said Fuqua’s case illustrates “a major problem with the U.S. health care system, which is that a third party, the health insurance industry, gets paid to stand between patients and their physicians and judge what treatments they will reimburse or not.”
She added via email, “Although there is preliminary evidence that IVIG and other immunomodulatory treatments might help highly selected patients, it’s far from proven. That will take millions of dollars and years to design, fund, conduct and publish more than one high-level clinical trial. But in the meantime, individual patients still need to be helped, and doctors must rely on the early evidence, including mine.”
Oaklander said that insurers might not be aware of preliminary evidence, or might discount it. And appeals often founder, she said, since the process is time intensive and physicians are not compensated for their participation.
Fuqua was unaware of Eyler’s social media campaign until it grew legs. She said she’s not sure what might come of it, but that she hopes “Aetna might respond to the support and really look into my case. I really just want the treatment I’ve been denied.”
Eyler wants that, as well. But he also said he wants faculty members -- namely, those with benefits (notwithstanding those many adjuncts without benefits)-- to check their “assumptions that we’ll just be covered if something goes wrong.”
“No matter what your [tenure] status is, we are not trained to advocate for ourselves about any of this,” he said. “That’s a big issue.”
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