It’s understandable to feel unprepared after being diagnosed with a chronic illness. Suddenly, your life is put on hold and your priorities shift. Your health and well-being is your main focus and your energy is devoted to finding treatment.
The journey to healing is never easy, and it’s likely you’ll encounter a few obstacles along the way. One of those obstacles, of course, is how to pay for the cost of managing a chronic condition.
Depending on your circumstances, you might have health insurance and enough income to pay for your treatment without too much worry.
Or, it might be that you’re in your mid-20s, uninsured, in school, and working a part-time job for $15 an hour. This is what happened to Meg Wells.
It was 2013 and Meg had just started a master’s program at Sonoma State University. She was studying cultural resource management, hoping one day to work at a historical museum as a curator.
Meg was 26, living on her own, and working a part-time job. She had just enough money to pay for her rent and various school fees. But her world was about to take a dramatic turn.
For a while, Meg had been experiencing things like bad indigestion, gas, and fatigue. She was busy with work and graduate studies, so she put off going to the doctor.
By November of 2013, however, her symptoms became too frightening to ignore.
“I was going to the bathroom so much,” she said, “and that’s when I started to see blood, and I was like, OK, something is really, really wrong.”
Ulcerative colitis (UC) is a type of inflammatory bowel disease (IBD) that causes inflammation and sores to develop in the large intestine. In many cases, the disease develops slowly and gets worse over time.
The exact cause of the condition is unknown, but researchers believe that genetics, environmental factors, and an overactive immune system may play a role.
Blood in the stool is a common symptom of UC. When Meg noticed blood, she knew it was time to get help.
Meg didn’t have health insurance at the time. She had to pay hundreds of dollars out of pocket for all the doctor’s visits, blood tests, and stool tests it took to rule out common causes of her symptoms.
After multiple visits, her healthcare team was able to narrow down the cause of her symptoms to UC, Crohn’s disease, or colon cancer.
One of her doctors suggested that it might be wise to wait until she had health insurance before taking the next step — a colonoscopy. This procedure can cost up to $4,000 without insurance coverage.
In a moment of desperation, she bought a health insurance plan from a broker. But when she learned it wouldn’t cover any healthcare services in her region, she had to cancel the plan.
“After that, my parents took over because I was just too sick to even deal with it,” Meg said. “By that point, I was just bleeding and in so much pain.”
Getting a diagnosis and treatment
In early 2014, Meg enrolled in the Silver 70 HMO health insurance plan through Kaiser Permanente with the help of her family. To maintain coverage, she pays premiums of $360 per month. This rate will increase to $450 per month in 2019.
She’s also responsible for copay or coinsurance charges on many of her medications, doctor’s visits, outpatient procedures, inpatient care, and lab tests. Only some of those charges count towards her annual deductible for doctor’s visits and tests, which is $2,250. Her insurance provider also sets an annual maximum on out-of-pocket spending for hospital stays, which is $6,250 per year.
With health insurance in hand, Meg visited a gastrointestinal (GI) specialist. She underwent a colonoscopy and upper GI endoscopy and was diagnosed with UC.
A few months later, she moved home to live with her parents in Vacaville, California.
By that point, Meg had started taking an oral medication used to treat inflammation in the lower intestine. Even with insurance coverage, she was paying about $350 out of pocket per month for this treatment. But she was still going to the bathroom a lot, experiencing abdominal pain, and having fever-like symptoms such as body aches and chills.
Meg had also been dealing with chronic back pain for years. After she developed symptoms of UC, her back pain got much worse.
“I couldn’t walk,” Meg recalled. “I was flat on the ground, not able to move.”
She connected with a new GI specialist at a local hospital, who referred her to a rheumatologist. He diagnosed her with of sacroiliitis, which is inflammation of the joints that connect your lower spine to your pelvis.
In a recent study published in Arthritis Care and Research, researchers found that sacroiliitis affects nearly 17 percent of people with UC. More generally, joint inflammation is the most common non-gastrointestinal complication of IBD, reports the Crohn’s & Colitis Foundation.
Meg’s rheumatologist warned her that many of the medications used to treat sacroiliitis make UC worse. Infliximab (Remicade, Inflectra) was one of the few drugs she could take to manage both conditions. She would need to visit the hospital every four weeks to receive an infusion of infliximab from a nurse.
Meg stopped taking the oral drug she was on and began receiving infusions of infliximab. She didn’t pay anything out of pocket for these infusions for the first few years. Her insurance provider picked up the bill of $10,425 per treatment.
Meg’s GI specialist also prescribed steroidal enemas to help reduce inflammation in her lower intestine. She paid about $30 out of pocket when she filled the prescription for this medication. She only had to fill it once.
With these treatments, Meg started to feel better.
“What I once thought was zero amount of pain, that’s actually like a four on the pain scale. I had just gotten so used to it. And then once I was on the medication, it was like, oh my gosh, I’ve been living in so much pain and didn’t even realize it.”
That period of comfort didn’t last for long.
Most people with UC go through periods of remission that can last weeks, months, or even years. Remission is when symptoms of a chronic disease like UC disappear. These symptom-free periods are unpredictable. You never know how long they’ll last and when you’ll have another flare.
Meg experienced her first period of remission from May 2014 until September of that same year. But by October, she was experiencing debilitating symptoms of UC again. Blood tests and a colonoscopy revealed high levels of inflammation.
Throughout the rest of 2014 and 2015, Meg visited the hospital multiple times to treat symptoms and complications of flares, including pain and dehydration.
“Dehydration is the thing that really gets you. It’s horrible.”
Her GI specialist tried to control the disease with prescription medications — not only infliximab and steroidal enemas, but also prednisone, 6-mercaptopurine (6-MP), allopurinol, antibiotics, and others. But these drugs weren’t enough to keep her in remission.
After another flare and hospitalization in early 2016, Meg decided to undergo surgery to remove her colon and rectum. An estimated 20 percent of people with UC need surgery to treat the condition.
Meg had the first of two operations in May 2016. Her surgical team removed her colon and rectum and used a portion of her small intestine to fashion a “J-pouch.” The J-pouch would eventually serve as a replacement for her rectum.
To give it time to heal, her surgeon attached the severed end of her small intestine to a temporary opening in her abdomen — a stoma through which she could pass stool into an ileostomy bag.
She had her second operation in August 2016, when her surgical team reconnected her small intestine to the J-pouch. This would allow her to pass stool more or less normally, without an ileostomy bag.
The first of those operations cost $89,495. That fee didn’t include the five days of in-hospital care and tests she received afterward, which cost another $30,000.
The second operation cost $11,000, plus $24,307 for three days of in-hospital care and testing.
Meg spent another 24 days in the hospital to receive treatment for pancreatitis, pouchitis, and postoperative ileus. Those stays cost her a cumulative $150,000.
In total, Meg was hospitalized six times in 2016. Before the end of her visit, she hit the annual limit set by her insurance provider on out-of-pocket spending for hospital stays. She only had to pay $600 toward the first operation.
Her insurance company picked up the rest of the tab — hundreds of thousands of dollars in hospital bills that her family would have otherwise had to pay if she were uninsured.
Ongoing tests and treatment
Since her last hospitalization in 2016, Meg has been on medication to manage her condition. She has also been following a carefully balanced diet, taking probiotic supplements, and practicing yoga to keep her gut and joints healthy.
None of these treatments are as costly as hospital stays, but she continues to pay a significant amount in monthly insurance premiums, copay charges, and coinsurance charges for care.
For example, she’s had at least one colonoscopy per year since 2014. For each of those procedures, she’s paid $400 in out-of-pocket charges. She also had her J-pouch evaluated after surgery, which cost her $1,029 in out-of-pocket fees.
She still receives infusions of infliximab to treat joint pain. Although she now gets one infusion every eight weeks instead of every six weeks. At first, she paid nothing out of pocket for these treatments. But starting in 2017, due to a change in their larger policy, her insurance provider began to apply a coinsurance charge.
Under the new coinsurance model, Meg pays $950 out of pocket for each infusion of infliximab that she receives. Her annual deductible doesn’t apply to these charges. Even if she hits her deductible, she will need to pay thousands of dollars per year to receive those treatments.
She finds yoga helpful for managing pain and relieving stress. Keeping her stress levels down helps her avoid flares. But attending yoga classes on a regular basis can be expensive, especially if you pay for drop-in visits rather than a monthly pass.
“It’s cheaper if you buy a month unlimited, but one of the results of me having my disease is that I don’t feel comfortable buying unlimited anything or buying stuff in advance. Because every single time I’ve done that, I’ve been hospitalized or too ill to go or take advantage of what I bought.”
Meg does most of her yoga at home, using a $50 phone app.
Earning a living
Although she was able to finish her master’s degree, Meg has found it hard to find and keep a job while managing the symptoms of UC and chronic joint pain.
“I would start thinking about dating again, I would start thinking about hunting for jobs, everything, and then my health would immediately start to decline,” Meg recalled.
She became financially dependent on her parents, who’ve been an important source of support for her.
They’ve helped cover the cost of many tests and treatments. They’ve advocated on her behalf when she was too sick to communicate with healthcare providers. And they’ve provided emotional support to help her cope with the effects that chronic illness has had on her life.
“It’s so hard to actually capture the true, whole picture of what having a disease like this does to you and your family,” Meg said.
But things have started to look up. Since Meg had her colon and rectum removed, she has experienced far fewer GI symptoms. She’s seen an improvement with her joint pain.
“My quality of life is 99 percent better. There’s that 1 percent that somebody looking into my life who has really good health and has never had any digestive problems — they’d probably think I’m a sickly person. But from my perspective, it’s so much better.”
Meg has started working from home as a freelance writer and photographer, which gives her control over where and for how long she works. She also has a food blog, Meg is Well.
Eventually, she hopes to become financially independent enough to manage the costs of living with chronic illness on her own.
“I hate that my parents have to help me out,” she said, “that I’m a 31-year-old woman who still has to rely on the help and financial support of her parents. I really hate that, and I want to try to find a way where I can just take it on all myself.”