Jackie Zimmerman lives in Livonia, Michigan. It takes several hours to drive from her home to Cleveland, Ohio — a trip she made countless times for doctor’s appointments and surgeries.
“[It] was probably at least a $200 trip every time I went there, between food, and the gas, and the time, and all the things,” she said.
Those trips are just a portion of the expenses Jackie has had to pay to manage her ulcerative colitis (UC), a chronic condition she’s been living with for years.
UC is a type of inflammatory bowel disease (IBD) that causes inflammation and sores to develop on the inner lining of the large intestine (colon). It can cause fatigue, abdominal pain, rectal bleeding, and other symptoms. It may also lead to various complications, some of which are life-threatening.
To treat the condition, Jackie and her family have paid thousands of dollars in insurance premiums, copays, and deductibles. They’ve also paid money out of pocket for travel, over-the-counter (OTC) medications, and other costs of care.
“If we’re talking what insurance has paid, we’re at least in like the million-dollar range,” Jackie said.
“I’m probably in the $100,000 range. Probably more because I’m not thinking about every deductible of every visit.”
Getting a diagnosis
Jackie was diagnosed with UC after living with gastrointestinal (GI) symptoms for about a decade.
“I had honestly been experiencing ulcerative colitis symptoms for probably 10 years before I saw a doctor about it,” she said, “but at that time, I was in high school, and it was embarrassing.”
In spring 2009, she saw blood in her stool and knew it was time to see a doctor.
She went to a local GI specialist. He advised Jackie to change her diet and prescribed some dietary supplements.
When that approach didn’t work, he conducted a flexible sigmoidoscopy — a type of procedure used to examine the rectum and lower colon. He spotted the tell-tale signs of UC.
“By then, I was in a full-blown flare,” Jackie recalled.
“It was incredibly painful. It was a really, really terrible experience. And I remember, I was laying on the table, the scope was over, and he tapped me on my shoulder, and he said, ‘Don’t worry, it’s just ulcerative colitis.’”
But as terrible as that experience was, nothing could prepare Jackie for the challenges she would face in the coming years.
‘Scary’ costs of care
At the time she was diagnosed, Jackie had a full-time job. She didn’t have to miss much work at first. But before long, her symptoms intensified, and she needed to take more time off to manage her UC.
“As things ramped up, and it did very quickly, I was in the hospital a lot. I was in the ER probably every week for months. I was doing longer stays in the hospital,” she continued, “I was missing a lot of work, and they were definitely not paying me for that time off.”
Soon after her diagnosis, Jackie’s GI doctor prescribed her mesalamine (Asacol), an oral drug to help reduce the inflammation in her colon.
But after starting the medication, she developed a buildup of fluid around her heart — a rare side effect of mesalamine. She had to stop using the drug, undergo heart surgery, and spend a week in the intensive care unit (ICU).
That was the first of many costly procedures, and extended hospital stays she would have as a result of her condition.
“At that time, the bills were just sort of rolling in. I would open them and just go like, ‘Oh, this is really long and scary,’ and then be like, ‘What’s the minimum, what is my bare minimum, of payment?’”
Jackie enrolled in a health insurance plan that would help cover the costs of her care. When it became too difficult to afford her monthly premiums of $600, her parents would step in to help.
Running low on options
Jackie also has multiple sclerosis (MS), an autoimmune disease that limits some of the medications she can take.
Because of those restrictions, her doctor couldn’t prescribe biologic drugs such as infliximab (Remicade), which are often used to treat UC if mesalamine is off the table.
She was prescribed budesonide (Uceris, Entocort EC) and methotrexate (Trexall, Rasuvo). Neither one of those medications worked. It seemed like surgery might be her best option.
“At that point, I was continuing to decline in terms of wellness,” she added, “and with nothing working quickly, I was starting to talk about seeing a surgeon.”
That’s when Jackie’s trips to the Cleveland Clinic in Ohio began. She would have to cross state lines to get the care she needed.
Four surgeries, thousands of dollars
At the Cleveland Clinic, Jackie would undergo surgery to remove her colon and rectum and create a reservoir known as a “J-pouch.” This would allow her to store stool and pass it anally.
The process would consist of three operations spread over a nine-month period. But due to unforeseen complications, it took four operations and more than a year to complete. She had her first operation in March 2010 and her last one in June 2011.
Several days before each operation, Jackie was admitted to the hospital for pre-operative testing. She also stayed for a few days after each procedure for follow-up testing and care.
During each hospital stay, her parents checked into a nearby hotel so they could help her through the process. “We’re talking thousands of dollars out of pocket, just to be there,” Jackie said.
Each operation cost $50,000 or more, much of which was billed to her insurance company.
Her insurance provider had set her annual deductible at $7,000, but in the second half of 2010, that company went out of business. She had to find a different provider and get a new plan.
“One year alone, I paid $17,000 in deductibles out of pocket because my insurance company dropped me and I had to get a new one. I had already paid my deductible and out-of-pocket max, so I had to start over in the middle of the year.”
Asking for help
In June 2010, Jackie lost her job.
She had missed too much work, due to illness and medical appointments.
“They would call me after surgery and say, ‘Hey, when are you coming back?’ And there’s no way really to explain to people that you don’t know,” she said.
“I wasn’t there enough. They were gracious about it, but they fired me,” she told Healthline.
Jackie received $300 per week in unemployment benefits, which was too much money for her to qualify for state aid — but not enough to cover her living expenses and costs of medical care.
“Half of my monthly income would’ve been my insurance payment at that point,” she said.
“I was definitely asking for help from my family, and I was really fortunate that they could provide it, but it was a pretty terrible feeling to be an adult and still have to ask your parents to help you pay your bills.”
After her fourth surgery, Jackie had regular appointments at the Cleveland Clinic to monitor her recovery. When she developed inflammation of her J-pouch, a common complication of the surgery she had, she needed to make more trips to Cleveland for more follow-up care.
The stress of staying insured
Surgery made a big difference in Jackie’s quality of life. Over time, she began to feel much better and eventually returned to work.
In spring 2013, she got a job at one of the “Big Three” automobile manufacturers in Michigan. This allowed her to ditch the expensive insurance plan she’d purchased and enroll in an employer-sponsored plan instead.
“I actually took their insurance, my employer’s insurance, for the first time because I felt like I was stable enough to hold a job and that I trusted that I would be there for a while,” she recalled.
Her boss understood her health needs and encouraged her to take time off when she needed. She stayed at that job for about two years.
When she left that job, she bought insurance through the state insurance exchange that had been established under the Affordable Care Act (“Obamacare”).
In 2015, she started another job at a non-profit organization. She swapped her ACA plan for another employer-sponsored plan. That worked well for a little while, but she knew it wasn’t a long-term solution.
“I felt like I stayed at that job longer than I wanted to for things like insurance,” she said.
She had an MS relapse earlier that year and would need insurance to cover the costs of managing both conditions.
But in the current political climate, the ACA felt too unstable for Jackie to buy another insurance plan through the state exchange. That left her dependent on her employer-sponsored plan.
She had to continue working a job that was causing her a lot of stress — something that can make the symptoms of both MS and UC worse.
Anticipating the next relapse
Jackie and her boyfriend got married in the fall of 2018. As his spouse, Jackie could enroll in his employer-sponsored insurance plan.
“I’m very fortunate that I was able to get on my husband’s insurance, that we decided to get married right at the right time,” she said.
This plan gives her the coverage she needs to manage multiple chronic health conditions while working as a self-employed digital marketing consultant, writer, and patient advocate.
Although her GI symptoms are currently under control, she knows that could change at any moment. People with UC can experience long periods of remission that might be followed by “flares” of symptoms. Jackie makes a point of saving some of the money she earns, in anticipation of a potential relapse.
“You always want to have a stash of money for when you get sick, because again, even if your insurance does cover everything and it’s amazing, you’re probably not working. So there’s no money coming in, you still have regular bills, and there’s no patient assistance for ‘I need groceries this month.’”
“The money out is just endless, and the money in stops really quickly when you can’t go to work,” she added, “so it’s a really expensive place to be.”