HCV Patient Fights and Wins Battle Against Chronic Illness

Near-fatal car accident leads man down long journey from infection to cure for hepatitis C.

Near-fatal car accident leads man down long journey from infection to cure for hepatitis C.

In the aftermath of what had the potential to be a fatal accident in 1969, Frank Bonomo, age 16 at the time, had to be given a blood transfusion.

The blood was donated from his cousin, who was also involved in the accident.

“They didn’t know the blood had hepatitis C,” Bonomo said.

Indeed, what saved Bonomo’s life would in turn make the next few decades increasingly difficult for him. It wouldn’t be until Bonomo turned 22 that he would truly understand the nature of his condition.

“I was told it was benign when I was 16 and then at 22 they said we’ve learned that it’s a slow acting virus,” Bonomo explained.

As is the case with many patients infected with hepatitis C virus (HCV), Bonomo had little knowledge about the disease before being diagnosed. In 70 to 80% of HCV cases, patients do not show symptoms of the virus.

Bonomo did not begin to show symptoms of the virus until he became jaundiced six years after his blood transfusion took place.

The year was 1975 when Bonomo sought treatment for his illness, but his options were extremely limited.

“There was no treatment for it, so [the doctor] said the best thing he could recommend was to lead as healthy a lifestyle as you can and let’s see what treatments they come up with down the line,” Bonomo explained.

Being young, athletic and feeling invincible, Bonomo did not see a need to change his lifestyle too drastically.

“I had always been athletic, so I figured it’s not going to affect me, whether it was from denial or a lack of information out there,” he said.

Bonomo advanced into his late twenties without issue until his job as a construction worker became increasingly difficult. The chronic fatigue that affects so many patients with HCV took hold of him completely.

“What I used to be able to do no problem was now exhausting me,” Bonomo said. “Where the job used to be fun, now it was tough to get through a day of work.”

But Bonomo did not let the disease stop him there. He decided to go back to college and complete his degree so he could become a social worker. However, even then he grappled with the fatigue that plagued him.

“In 1994, I couldn’t hold down a steady job because of fatigue, both mental and physical. One week I’d be fine and the next week, not so much,” Bonomo said.

Eventually, Bonomo would undergo treatment with interferon and ribavirin, where he would suffer extreme flu-like conditions that left him unable to function at all. His condition worsened to the point that he could no longer bear it, and the doctors discontinued his regimen.

After his failed treatment, Bonomo went to the Mayo Clinic where his doctor provided him with the hope that he needed.

“Being a researcher, he said there was something in the pipeline that would help. We were waiting for what eventually came out to be Harvoni,” Bonomo said.

As soon as Harvoni was on the market, Bonomo was able begin treatment with the novel direct-acting antiviral. He even reported a relatively easy and helpful overall experience with his insurer and Harvoni manufacturer Gilead Sciences.

“You have to be persistent and explain things,” Bonomo said. “People get upset and angry, and I think sometimes are their own worst enemy.”

But Bonomo is not blind to the plight of many other HCV patients.

“Insurers need to realize they need to be economical because [this medication] cures the disease and not just treat it,” he said. “They should get behind it and support the testing and treatment with Harvoni or whatever the next medication may be.”

Bonomo attributes his positive experience with his medical providers to both a calm demeanor and the strength to be his own patient advocate. Now 62-years-old, Bonomo enjoys a healthy life free of HCV.

With the help of his insurers, doctors and other medical professionals, he was able to get the care he needed and the treatment he deserved at a reasonable cost.

“I’ve heard that people give up and have sworn at their insurance providers. You have to be a strong advocate and use your medical network to help with the advocacy,” he advises.