In 1992, Connie Welch underwent surgery at an outpatient center in Texas. She’d later find out that she contracted the hepatitis C virus from a contaminated needle while there.
Before her operation, a surgical technician took a syringe from her anaesthesia tray, injected himself with the drug it contained, and topped up the syringe with saline solution before setting it back down. When the time came for Connie to be sedated, she was injected with the same needle.
Two years later, she received a letter from the surgical center: The technician had been caught stealing narcotic substances from syringes. He had also tested positive for hepatitis C infection.
Hepatitis C is a viral infection that causes liver inflammation and damage. In some cases of acute hepatitis C, people can fight off the infection without treatment. But in most cases, they develop chronic hepatitis C — a long-lasting infection that requires treatment with antiviral medications.
An estimated 2.7 to 3.9 million people in the United States have chronic hepatitis C. Many have no symptoms and don’t realize they’ve contracted the virus. Connie was one of these people.
“My doctor called me and asked me if I had received notice about what had happened, and I said I did, but I was very confused about it,” Connie told Healthline. “I said, ‘Wouldn’t I have known I had hepatitis?’”
Connie’s doctor encouraged her to get tested. Under the guidance of a gastroenterologist and hepatologist, she underwent three rounds of blood tests. Each time, she tested positive for the hepatitis C virus.
She also had a liver biopsy. It showed that she’d already sustained mild liver damage from the infection. Hepatitis C infection can cause damage and irreversible scarring to the liver, known as cirrhosis.
It would take two decades, three rounds of antiviral treatment, and thousands of dollars paid out of pocket to clear the virus from her body.
Managing treatment side effects
When Connie received her diagnosis, there was only one antiviral treatment for hepatitis C infection available. In January 1995, she began to receive injections of non-pegylated interferon.
Connie developed “very harsh” side effects from the medication. She struggled with extreme fatigue, muscle and joint aches, gastrointestinal symptoms, and hair loss.
“Some days were better than others,” she recalled, “but for the most part, it was severe.”
It would’ve been hard to hold down a full-time job, she said. She had worked for years as an emergency medical technician and respiratory therapist. But she had quit shortly before being tested for hepatitis C, with plans to return to school and pursue a nursing degree — plans that she shelved after learning she had contracted the infection.
It was hard enough to manage her responsibilities at home while coping with the side effects of treatment. There were days when it was difficult to get out of bed, let alone take care of two kids. Friends and family members stepped in to help with childcare, housework, errands, and other tasks.
“I was a full-time mom, and I tried to make everything at home as normal as possible for our routine, for our kids, for school, and everything,” she recalled, “but there were some times I had to have some help.”
Fortunately, she didn’t have to pay for extra help. “We had a lot of gracious friends and family that stepped in to kind of help, so there was no financial cost out for that. I was grateful for that.”
Waiting for new treatments to become available
At first, the injections of non-pegylated interferon seemed to work. But in the end, that first round of antiviral treatment proved unsuccessful. Connie’s viral count rebounded, her liver enzyme count increased, and the side effects of the medication became too severe to continue.
With no other treatment options available, Connie had to wait several years before she could try a new medication.
She started her second round of antiviral treatment in 2000, taking a combination of pegylated interferon and ribavirin that had been recently approved for people with hepatitis C infection.
This treatment was also unsuccessful.
Once again, she had to wait years before a new treatment became available.
Twelve years later, in 2012, she began her third and final round of antiviral treatment. It entailed a combination of pegylated interferon, ribavirin, and telaprevir (Incivek).
“There was a lot of cost involved because that treatment was even more expensive than the first treatment, or the first two treatments, but we needed to do what we needed to do. I was very blessed that the treatment was successful.”
In the weeks and months following her third round of antiviral treatment, multiple blood tests showed that she had achieved a sustained viral response (SVR). The virus had dropped to an undetectable level in her blood and remained undetectable. She had been cured of hepatitis C.
Paying for care
From the time she contracted the virus in 1992 to the time she was cured in 2012, Connie and her family paid thousands of dollars out of pocket to manage hepatitis C infection.
“From 1992 to 2012, that was a 20-year span, and that involved a lot of blood work, two liver biopsies, two failed treatments, doctor visits,” she said, “so there was a lot of cost involved.”
When she first learned that she might have contracted hepatitis C infection, Connie was fortunate to have health insurance. Her family had purchased an employer-sponsored insurance plan through her husband’s work. Even so, the out-of-pocket costs “started racking up” quickly.
They paid about $350 per month in insurance premiums and had an annual deductible of $500, which they had to meet before their insurance provider would help cover the costs of her care.
After she hit the annual deductible, she continued to face a $35 copay charge for each visit to a specialist. In the early days of her diagnosis and treatment, she met with a gastroenterologist or hepatologist as often as once per week.
At one point, her family switched insurance plans, only to discover that her gastroenterologist fell outside their new insurance network.
“We were told that my current gastroenterologist was going to be on the new plan, and it turns out he wasn’t. And that was actually very disturbing because I had to find a new doctor during that time, and with a new doctor, you kind of almost have to start all over.”
Connie began to see a new gastroenterologist, but she was dissatisfied with the care he provided. So she returned to her previous specialist. She had to pay out of pocket to visit him, until her family could switch insurance plans to bring him back into their network of coverage.
“He knew that we were in a time of no insurance that was going to cover him,” she said, “so he gave us a discounted rate.”
“I want to say one time he didn’t even charge me for one of the office visits,” she continued, “and then the other ones after that, he just charged me what I would normally pay in a copay.”
The costs of tests and treatment
In addition to copay charges for doctor’s visits, Connie and her family had to pay 15 percent of the bill for every medical test she received.
She had to get blood tests before, during, and after each round of antiviral treatment. She also continued to have blood work done at least once a year for five years after achieving SVR. Depending on the tests involved, she paid about $35 to $100 for each round of blood work.
Connie has also undergone two liver biopsies, as well as annual ultrasound examinations of her liver. She’s paid about $150 or more for each ultrasound exam. During those exams, her doctor checks for signs of cirrhosis and other potential complications. Even now that she’s been cured of hepatitis C infection, she’s at heightened risk of developing liver cancer.
Her family also covered 15 percent of the cost of three rounds of antiviral treatment that she received. Each round of treatment cost tens of thousands of dollars in total, including the portion billed to their insurance provider.
“Fifteen percent of 500 may not be so bad,” she said, “but 15 percent of multiple thousands can add up.”
Connie and her family also faced charges for prescription medications to manage the side effects of her treatment. These included anti-anxiety medications and injections to boost her red blood cell count. They paid for gas and parking to attend countless medical appointments. And they paid for premade meals when she was too sick or busy with doctor’s appointments to cook.
She has incurred emotional costs, too.
“Hepatitis C is like a ripple in the pond, because it affects every single area of your life, not just financially. It affects you mentally and emotionally, along with physically.”
Battling the stigma of infection
Many people have misconceptions about hepatitis C, which contributes to the stigma associated with it.
For example, many people don’t realize that the only way someone can transmit the virus is through blood-to-blood contact. And many are afraid of touching or spending time with someone who’s contracted the virus. Such fears can lead to negative judgments or discrimination against people who live with it.
To cope with these encounters, Connie has found it helpful to educate others.
“My feelings have been hurt several times by others,” she said, “but actually, I took upon that as an opportunity to answer questions other people had about the virus and to dispel some myths about how it is contracted and how it is not.”
She now works as a patient advocate and certified life coach, helping people manage the challenges of liver disease and hepatitis C infection. She also writes for several publications, including a faith-based website that she maintains, Life Beyond Hep C.
While many people face challenges on their way to a diagnosis and treatment, Connie believes there’s reason for hope.
“There’s more hope now to get beyond hep C than ever before. Back when I was diagnosed, there was only one treatment. Now today, we currently have seven different treatments for hepatitis C of all six genotypes.”
“There’s hope for patients even with cirrhosis,” she continued. “There’s more high-tech testing now to be able to help patients get diagnosed early with liver damage. There’s just so much more available now for patients than there ever has been.”