Kim Bossley’s mother was diagnosed with hepatitis C infection in 2005, almost four decades after contracting the virus through a blood transfusion.
As a kidney transplant recipient, her mother had blood tests conducted on a regular basis. When her doctor noticed that her liver enzyme levels were high, he checked for potential causes.
“They noticed her liver enzymes were off the charts,” Kim told Healthline, “so they went ahead and performed the hep C test, and she came back positive.”
Hepatitis C is a viral infection that can be passed from one person to another through blood. Many people with chronic hepatitis C infection live with it for years before learning they have it. Over time, it can damage the liver and cause scarring, known as cirrhosis.
When Kim’s mother received a diagnosis of hepatitis C, her doctor encouraged the rest of the family to get tested. Kim’s father tested negative for the virus. Her sister did, too.
But when Kim received her test results, she learned she also had the infection.
“I procrastinated a little bit,” she recalled. “I didn’t think it was that serious. I figured if they were negative, I was too. But mine came back positive.”
Unfortunately, Kim’s mother passed away due to complications of the disease in 2006. Kim has since established The Bonnie Morgan Foundation for HCV in her name to help others get the support they need to cope with hepatitis C infection.
For Kim, it took nearly 10 years to clear the virus from her body. During that time, she spent thousands of dollars on medical care, received several rounds of antiviral treatment, and developed end-stage liver disease — a condition she continues to live with today.
Kim was born in 1968. During her delivery, her mother received a blood transfusion that was later found to be contaminated with the hepatitis C virus. Both Kim and her mom contracted the virus from that transfusion.
By the time Kim learned that she had hepatitis C infection, more than 36 years later, she had already developed symptoms. But as a mother of two kids and the owner of multiple businesses, she thought she was simply burnt out.
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“I was having severe fatigue, muscle pain, and joint pain, and I couldn’t open milk containers or jars. I was really struggling, but I just assumed it was working too much.”
After her positive test result, Kim’s primary care provider referred her to an infectious disease specialist in Greeley, Colorado, about a 30-minute drive away from her home.
The specialist conducted blood work and a liver biopsy to assess her condition. Based on the results, he encouraged her to wait before undergoing antiviral treatment. At that point, the only treatment option entailed a combination of pegylated interferon and ribavirin. This treatment had a relatively low rate of success and a high risk of adverse side effects.
“I did a biopsy and only had stage zero to stage one [cirrhosis],” Kim explained, “so he said the treatment with interferon was extremely harsh and he recommended we wait.”
It didn’t take long for Kim’s condition to get worse.
Kim stopped seeing her infectious disease specialist and began going to a hepatologist in Denver, Colorado, after being admitted to the hospital with high blood pressure. A second biopsy five years later showed that her liver damage had progressed to stage four decompensated cirrhosis. In other words, she had developed end-stage liver disease.
Kim knew how serious her condition was. Her mother had passed away four years earlier from the same disease. She was only 59 years old when she died.
In 2011, her hepatologist prescribed 12 weeks of antiviral treatment with pegylated interferon and ribavirin.
Kim had health insurance that covered a portion of the medication costs. Even so, her out-of-pocket bill for three months of treatment was set to be about $3,500 per month. She applied for patient assistance through a private foundation, which brought the out-of-pocket costs down to $1,875 per month.
The side effects of the treatment were “extremely harsh,” she said. She developed severe fatigue and other flu-like symptoms, as well as anemia. She had to nap in her office to get through the work day.
“I still had to run my companies because my employees depended on me, so I didn’t miss a day,” she said. “I put an air mattress in my office, so that I could take my kids to school, go to work, at least open the doors so customers could come in and my employees could get a paycheck, and I worked like an hour and laid down.”
“I think if I had to work for someone other than myself, that would have been the worst,” she said, “forcing yourself to go to work and not being able to have the luxury that I did to lay down and rest.”
After 12 weeks of treatment, Kim still had detectable levels of the hepatitis C virus in her blood. It was clear to her doctor that the medications weren’t working — and he refused to prescribe another round of them.
“I was
non-responding and was pulled off at week 12, which actually devastated me
because my mom passed away from hep C, and so watching her die from it, knowing
I was stage four, having two little kids, a company — I mean, it took a lot. I
had to fight.”
There weren’t any other treatment options available at the time, so all she could do was hope for a cure to come down the pipeline.
But Kim chose a different route. Rather than wait for new medications to hit the market, Kim applied for multiple clinical trials. She was turned away from the first three studies she applied to because she didn’t fit their eligibility criteria. Finally, the fourth trial she applied to accepted her as a participant.
It was a study on a promising new treatment for hepatitis C, which involved a combination of pegylated interferon, ribavirin, and sofosbuvir (Sovaldi).
As a research subject, she wouldn’t have to pay for the medications. She even received a stipend of $1,200 for participating.
At first, she was assigned to the placebo group. She had to undergo 24 weeks of treatment with the placebo, before she could receive the “real stuff.”
In late 2013, she finally started 48 weeks of treatment with active medications. The drugs had an immediate effect on the level of the hepatitis C virus in her blood.
“I started out with a 17 million viral load,” she said. Within three days, it had dropped to 725, and within five days, it dropped to 124. By day seven, her viral load had hit zero.
The lead researcher had never seen someone’s viral load drop so quickly.
Kim learned that she had been cured of hepatitis C 12 weeks after receiving her last dose of antiviral medications. It was January 7, 2015 — her mother’s birthday.
Although Kim has been cured of hepatitis C, she continues to live with the damage it caused to her liver. For years, cirrhosis has been widely considered irreversible. But with ongoing advancements in medical science, recovery might one day be possible.
“We’re moving in the right direction,” Kim said. “It may take decades, but I’m just happy [the hepatitis] is cured, and [my health] is going the other way instead of deteriorating.”
Although Kim is hopeful for her future, the financial costs of recovery have been steep.
She had private health insurance when she first received her diagnosis. But her insurance provider quickly dropped her, and it was hard to find another that would take her on.
“As soon
as I got the diagnosis, it’s like the health insurance companies found out, and
then I was listed with a pre-existing condition. I was kicked off of life
insurance policies. I was kicked off my health insurance.”
As someone who had been “black flagged” in the private market, she was able to enroll in health insurance through CoverColorado. This state-sponsored program offered coverage to people who had been denied private insurance due to pre-existing medical conditions. She paid about $400 in monthly premiums and had an annual deductible of about $500.
In 2010, she switched her insurance provider and plan to bring her hepatologist into her network of coverage. She enrolled in a Blue Cross Blue Shield plan, for which she paid about $700 per month in premiums. Since then, her monthly premiums have increased to $875. Her annual deductible has reached $2,500.
Even after Kim hits her insurance deductible each year, she pays thousands of dollars out of pocket in copay charges for medical appointments, tests, and medications.
For example, she paid $100 in copay charges for each visit with her infectious disease specialist. She pays $45 in copayments for each appointment with her hepatologist. To manage the physical and psychological effects of her condition, she has also paid to visit a chiropractor and mental health counselor.
“I’ve found myself periodically getting into depression, where I had to seek out counseling,” she said. “That’s something that I think is really hard for hep C patients to accept, that you need counseling, and I recommend it.”
Kim has also gone through two liver biopsies, for which she paid thousands of dollars out of pocket in copayments. She continues to get blood work done every three to six months, which costs her about $150 out of pocket each time. She also undergoes CT or MRI scans three times a year, in order to monitor nodules that have developed on her liver, pancreas, kidney, and lungs. Each round of scans costs about $1,000 to $2,400.
On top of those costs, she also pays thousands of dollars for medications each month. She pays about $800 out of pocket per month for rifaximin (Xifaxan), $100 for lactulose, and $50 for Tramadol. She takes Xifaxan and lactulose to treat hepatic encephalopathy, a complication of liver disease that causes confusion and other cognitive symptoms. She uses Tramadol to manage peripheral neuropathy — a type of nerve damage possibly caused by hepatitis C infection or her interferon treatments.
Liver disease has affected her grocery bill, too. She has to follow a nutrient-rich diet and eats more lean proteins, vegetables, and fruits than she used to. Eating healthier costs more money, she noted.
To cover the costs of her medical care on top of her day-to-day living expenses, she has to carefully budget her income.
“We don’t live lavishly, obviously, and the kids have
sacrificed things they’ve wanted to do, and we as a family have sacrificed, but
I’ve told them, someday I’ll pay you back.”
The financial costs of hepatitis C can be debilitating — but they aren’t the only costs associated with the condition. Living with a chronic health condition can be socially and emotionally taxing, especially when it’s stigmatized as much as hepatitis C is.
“Back in 2005 to 2010, there was no support, there was no education,” Kim explained. “You were labeled infectious, and even when you go into the hospital area, the infectious disease [clinic] is clear across the other side of the hospital, so you’re segregated immediately, and you already feel like you’ve got a black X on your forehead.”
“I used to go into the doctors’ offices and look at the faces of the people sitting in there. You know, do you have it? Do you have it? I just wanted to connect,” she said.
Although stigma and hepatitis C infection continue to go hand-in-hand, Kim believes things are starting to change for the better. There’s more support and information available than when she received her diagnosis. And patient advocates like her have been working hard to raise awareness and help others cope with the disease.
“I think it’s really important that the people that do have it and have been treated, you know, share your stories,” she said, “because you don’t know whose life you’re going to touch.”