The Hepatitis C Stigma: 'You Feel Like You're an Outcast'

How treatment with Harvoni changed the life of a patient infected with HCV.

How treatment with Harvoni changed the life of a patient infected with HCV.

One day can make all the difference in the world, and for Raymond Kolins one day was all it took for the hepatitis C virus (HCV) to take over his life.

“In a 2-hour period, I went from Superman to nothing,” Kolins recalled of his diagnosis with hepatitis C.

What began as a family excursion to visit his children ended in a trip to the hospital that would last more than six weeks. Kolins could not even make the trip home because of the severity of his condition.

At first, the doctors provided a false diagnosis of cancer without evidence to support these claims.

“In a six-week period, I went from 240 pounds to 160,” Kolins said. “It was horrible.”

Even more horrible, perhaps, was the fact that even when Kolins’ doctors thought to test him for HCV, they could find no medical reason other than a small tattoo that would account for his infection.

In fact, Kolins was shocked to find out that, to the doctors’ best estimations, he had been living with the infection for 34 years despite leading a healthy, active life and having no obvious symptoms.

With a diagnosis in hand the doctors sprang into action, counseling Kolins to undergo treatment with interferon.

“They said I needed to go to a class and it was a class telling you basically this medicine’s going to tear you up,” Kolins recalled. “They had me on it for 3 months. The medicine was brutal. Most people who were on the medicine couldn’t even be on it for three months, but I stuck with it because I was determined.”

Despite Kolins’ determination, treatment was unsuccessful, so he underwent a subsequent regimen for six months.

“It was pretty harsh medicine just like the first one and that didn’t work,” Kolins said. “After that I gave up. I said, ‘That’s it. I’m going to get a liver transplant.’ It was pretty rough. I’d say about a year went past and they said a new medicine was coming out, and I said, ‘I don’t want to do this again.’ I just gave up.”

Kolins’ reaction is not uncommon for HCV patients who have gone through treatment with interferon and ribavirin. The side effects are often intolerable, leading to severe conditions such as anemia, insomnia, depression, and chronic fatigue.

Many patients will discontinue treatment or deny future treatment based on their experiences with these medications, which as of June 2015 are no longer the standard of care for patients with the virus.

After being coaxed by his doctors, Kolins agreed to give his health one last chance with Harvoni. Again, Kolins’ life changed almost instantly.

“After the first month, they told me the medicine was working,” Kolins said. “It was harmless; it was like taking an aspirin. No side effects, but I felt a little tired. But I was used to feeling tired. About two weeks back I found out definitely that I beat it.”

Kolins’ clean bill of health comes as a relief, not only to him but to the rest of his family, who were terrified of the infection spreading to them.

“If people don’t understand it, everybody’s scared,” Kolins explained.

His diagnosis put a strain on his relationships with his family members, particularly with his son and grandchild. His son, not aware of the facts of the disease, was concerned about the infection spreading to his child.

“If I would pick up the baby, it would be, ‘Are you bleeding?’ If I had a hamburger and some ketchup went on my shirt, ‘Oh is that blood? Give me the baby!’ You feel like you’re an outcast,” Kolins said.

Kolins attributes the stigma surrounding HCV to a lack of coverage by the media, and a lack of testing performed by doctors.

“I think if the media would start talking about hepatitis C and make it known it’s not like leprosy, and it’s curable, people would understand and not be scared,” Kolins explained. “I think that’s part of the problem, people are scared and they hear about how bad the medicine was four or five years ago. They need to be hearing about how easy the medicine is today. It’s like taking a vitamin.”

Kolins stressed the importance of getting tested, especially for those aged 45 years and older.

“People have to know and people just have to get checked,” he said. “It should be a routine exam, and it will save your life.”

Kolins is positive about his future now that he has his four-year battle with HCV safely behind him. Despite being 65, he said he feels 30 years younger, and that his fatigue has completely vanished with the virus out of his system.

“When I got sick I was looking to sell stuff, but now I’m just looking ahead,” Kolins said. “I want to live again. It’s nice to be alive.”