After more than a year, Nyannah Jeffries is still paying off the first hospital bill she received in her quest to find out what was causing the painful gastrointestinal symptoms she had been experiencing.

Nyannah visited her local emergency department in October 2017 after noticing blood in her stool. She didn’t have health insurance at the time, so a hospital visit was bound to be pricey.

“First I went to the emergency room, and they said they didn’t see anything,” she told Healthline, “but I was like, ‘No, I’m losing blood, and I know there’s something going on.’”

The hospital ran a few tests on Nyannah, but didn’t reach a diagnosis. She was discharged without any medication, the recommendation to find a gastrointestinal (GI) doctor, and a bill of nearly $5,000.

It wasn’t until months later that Nyannah was diagnosed with ulcerative colitis (UC), a type of inflammatory bowel disease that causes inflammation and sores to develop on the inner lining of the large intestine (colon).

Seeking a diagnosis

Nyannah first developed symptoms of UC when she was 20 years old. She was living with her mother and grandparents and working part-time as a sales associate for Clinique.

In November 2017, the month after her visit to the emergency department, she transitioned from part-time to a full-time position in her job.

The transition made her eligible for an employer-sponsored health insurance plan.

“At my job, I was part-time, and they were making me full-time,” she recalled, “but I needed them to speed up the process so I could have insurance.”

Once she was insured, Nyannah paid a visit to her primary care practitioner (PCP). The doctor suspected that Nyannah might have a gluten intolerance and ordered blood tests to check for Celiac disease. When those tests came back negative, she referred Nyannah to a GI for more testing.

The GI conducted an endoscopy to examine the inner lining of Nyannah’s GI tract. This led to a diagnosis of UC.

The trials and errors of treatment

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People with UC often experience periods of remission, when their symptoms disappear. But those periods can be followed by flares of disease activity when symptoms return. The goal of treatment is to achieve and maintain remission for as long as possible.

To help relieve her symptoms and induce remission, Nyannah’s doctor prescribed an oral medication known as Lialda (mesalamine) and tapered doses of the steroid prednisone.

“She would taper the dosage of prednisone, depending on how my symptoms were feeling and how much blood I was losing,” Nyannah explained.

“So, if I was losing a lot, she kept it at 50 [milligrams], and then once I started to get a little bit better, we would taper it down to like 45, then 40, then 35,” she continued, “but sometimes as I got lower, to like 20 or 10, then I would start bleeding again, so then she’d take it back up.”

When she was taking high doses of prednisone, she developed noticeable side effects, including jaw stiffness, bloating, and hair loss. She lost weight and struggled with fatigue.

But for a few months, at least, the combination of Lialda and prednisone seemed to keep her GI symptoms under control.

That period of remission didn’t last for long, though. In May 2018, Nyannah traveled to North Carolina for work-related training. When she returned home, her symptoms came back with a vengeance.

“I don’t know if it was just because of me traveling and the stress of that or what, but after I came back from that, I had a horrible flare-up. It’s like none of the medicine I was taking was working.”

Nyannah had to take two weeks off work to recover, using up her paid vacation days.

Her GI took her off Lialda and prescribed injections of adalimumab (Humira), a biologic drug that can help reduce inflammation in the colon.

She hasn’t developed any side effects from Humira, but she has found it tricky to learn how to self-inject the medication. Guidance from a home care nurse has helped — but only to a point.

“I have to self-inject every week, and at first when the home health lady came, I was like a pro,” she said. “I was just injecting myself. I was like, ‘Oh, this isn’t so bad.’ But I know when she’s not there, as time goes on, sometimes you might have a bad day or rough day where you’re just kind of tired and you’re like, ‘Oh, my gosh, I’m kind of scared to give myself an injection.’”

“Since I’ve done this like 20 times, I know what this is going to feel like,” she continued, “but you still get a little frozen up. That’s the only thing. I’m like, ‘OK, just got to calm down, relax, and take your medicine.’ Because you’ve got to think about, in the end, this is going to help me.”

Paying for the costs of care

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Humira is expensive. According to an article in the New York Times, the average annual price after rebates increased from about $19,000 per patient in 2012 to more than $38,000 per patient in 2018.

But for Nyannah, the drug is covered in part by her health insurance plan. She’s also enrolled in a manufacturer’s rebate program, which has brought the cost down further. She hasn’t had to pay anything out of pocket for the medication since she hit her insurance deductible of $2,500.

Even so, she still faces many out-of-pocket costs to manage her UC, including:

  • $400 per month in insurance premiums
  • $25 per month for probiotic supplements
  • $12 per month for vitamin D supplements
  • $50 for an infusion of iron when she needs it

She pays $50 per visit to see her GI, $80 per visit to see a hematologist, and $12 for each blood test they order.

She also pays $10 per visit to see a mental health counselor, who’s helping her cope with the effects that UC has had on her life and sense of self.

Nyannah has had to make changes to her diet, too. To keep her symptoms under control, she has to eat more fresh produce and less processed food than she used to. That’s increased her grocery bill, as well as the amount of time she spends preparing meals.

Between the costs of managing her condition and covering day-to-day living expenses, Nyannah has to budget each week’s pay carefully.

“I kind of get stressed out when it’s payday because I’m like, ‘I have so much to do,’” she said.

“So, when I do get paid, I really try and analyze it,” she continued. “I’m like, OK, I can only do maybe $10 towards hematology today and $10 towards my primary. But I always try and pay the doctors that I have to see on a regular basis, and my older bills, I might put off until the next check or try and work out a plan with them.”

She’s learned the hard way that it’s important to prioritize bills from doctors that she depends on for regular care. When she was late paying one of her bills, her GI dropped her as a patient. She had to find another one to take over her treatment.

This November, the hospital started garnishing her wages to pay off the debt from her first emergency visit in October 2017.

“They would call me saying, ‘You need to pay this, you need to pay that,’ more aggressive. And I was like, ‘I know, but I have all these other bills. I can’t. Not today.’ That would, in turn, make me stressed out, and so then it’s just a domino effect.”

Like many people with UC, Nyannah finds that stress can trigger a flare and make her symptoms worse.

Preparing for the future

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Nyannah’s human resources (HR) representative and manager at work have been understanding of her health needs.

“My counter manager for Clinique, she is so supportive,” she said. “She would bring me Gatorade, because I lose electrolytes, and always make sure I was eating. She’s like, ‘Nyannah, you need to go on break. You need to eat something.’”

“And then, like I said, my HR, she’s really sweet,” she continued. “She always makes sure if I need time off, she’ll schedule me accordingly. And if I have doctor’s appointments, I always go to her before she makes the schedules, so then she’s able to coordinate and adjust whatever she needs to so I can go to that appointment.”

But when Nyannah feels too sick to work, she has to take unpaid time off.

That makes a noticeable dent in her paycheck, affecting her income to the extent that she can’t easily afford. To help make ends meet, she’s started looking for a new job with a higher wage. Maintaining health insurance coverage is a major priority in her job hunt.

Before she applies for a position, she checks the company’s website to learn about its employee benefits. She’s also in touch with her contact at Humira since a change in her employment or health insurance could potentially affect her eligibility for the manufacturer’s rebate program.

“I have to talk with my Humira ambassador,” she explained, “because she’s like, ‘You still want to make sure you’re able to get your medicine and cover it.’”

With a new job, she hopes to earn enough money to not only pay for her medical bills but also invest in a camera and the tools and training she needs to build a career as a makeup artist.

“I have all these bills, and then I still have to put gas in my car to get to and from work, I still have to buy groceries, so I don’t really buy anything for myself anymore. So that’s why I am trying to look into a new job, just so I can have a little bit of extra money to just get some things I need.”

She also wants to set aside some savings to help cover the costs of healthcare that she might need in the future. When you have a chronic health condition, it’s important to plan for surprise medical bills.

“You have to put into account those bills — and they do pop up,” she explained.

“I would say to try and prepare you for that, like, always try and put something aside, because you never know.”