Emerging from the Shadows of Hepatitis C
From the bright lights of Broadway to the darkness of hepatitis C infection, effective new drugs help patient start life anew.
Terrence Witter never imagined that a simple blood test would change his life forever and strip away the very thing that gave him meaning. He never imagined he would get hepatitis C virus (HCV).
Witter was a stage manager for the Broadway musical, Chicago, for 18 years. While most stage managers frequently go from one show to the next, Witter remained a staple of the production team for Chicago for nearly two decades.
Witter was first diagnosed with the disease in 2000 at age 40. Witter said he had very little knowledge about HCV when he received the dire news.
“Initially I wasn’t very alarmed or concerned or anything. I was just kind of surprised and baffled by it,” Witter said.
His surprise mimicked that of his doctor, as Witter was not a part of any groups that place him at higher risk for contracting the virus, including intravenous drug users or people who had blood transfusions.
“I didn’t fit into any of the high risk categories. [The doctor] was kind of surprised and couldn’t figure out how I caught it,” Witter recalled.
At the time of his diagnosis, it was a little known fact that those born between the years 1945 and 1965 were at high risk for having HCV. Approximately 75 percent of those with HCV are a part of this Baby Boomer category.
As Witter learned more about both the origins of his disease and the consequences that accompany HCV, he became more frightened.
“The more I learned about it, the more I was scared and depressed. I felt a little bit like a pariah; like there was something I did. I felt very uneasy talking to anyone about it. I was very worried what my future was going to be,” Witter said.
He started treatment soon after diagnosis, and the effects were unforgettable.
“The interferon and ribavirin made me feel sick every week that I did the procedure. I just felt awful. I felt nauseous and I felt like I had the flu,” Witter recalled. “I just was rundown and feeling miserable. It was really difficult for me to function or just to get out of bed in the morning.”
The struggle lasted for 11 months.
“I was in the hospital with pneumonia at one point. I had lost 40 pounds and I got demoted from my job at Chicago from production stage manager to assistant stage manager,” Witter said.
The disease had truly taken a toll on his quality of life.
After nearly a year of intense treatment and horrible side effects, Witter still was not rid of the disease. With only a 45 percent success rate at the time, the interferon proved unable to effectively treat Witter’s HCV.
“I went through that awful treatment with no positive outcome and that was the point that I got really scared. It was the only treatment available and I just felt hopeless and depressed. Really for the last 15 years, I’ve just been scared and miserable about this whole thing,” Witter said.
The combination of hopelessness, depression and life-altering side effects turned Witter’s life completely upside-down. Following his unsuccessful treatment, Witter lost his job completely and was no longer a part of the Chicago production.
“It was sort of like a downward spiral through all of this. It was truly frightening. After I lost the job at Chicago, given my health situation, I was so depressed I was almost suicidal,” Witter said.
Depression is a common side effect for those dealing with the disease and receiving treatment. The effects of depression can be just as debilitating as other side effects including anemia, insomnia and migraines.
Depression was not the only one of Witter’s symptoms that kept him under HCV’s control. The fatigue that accompanies the virus rendered him utterly incapacitated, unable to even get out of bed in the morning.
“It really limited my ability to function both at work and socially,” Witter said.
But perhaps the most detrimental of Witter’s reactions to having HCV was not the chronic fatigue, nor the depression. Instead, it was his inability to talk about the impact of the disease with others due to the stigmatization of patients with HCV.
“I think that’s part of the difficulty of being diagnosed with this virus, that there is a real stigma attached to it that made it difficult to talk about. And because of that it’s difficult to get information about it because you’re scared about other people knowing and you don’t really want to talk about it,” Witter said.
Even his closest family members reacted in a way that made him unwilling to talk about it with them at first. Conversations were strained and awkward as his family made private judgments about his disease and where he had gotten it.
“The only conversations I would have about it would be with my doctor and my family. Of course, when I started the interferon treatment, I had to tell my employer, but even then I was afraid to tell anybody else at work because I was afraid of what people might think,” Witter said.
Alone in dealing with the disease save for a few family members and his doctor, Witter became hermit-like, focusing only on the management of his depression and of his HCV. The negative thoughts abounded inside Witter’s mind, and he thought there would be no way out of this downward spiral.
“I really 100 percent believed that I would have a liver transplant in the future or die young from this disease,” he said.
Witter discussed the possibility of doing another interferon regimen with his doctor due to the increased percentage of success; however, the failed treatment the first time around gave Witter little hope that the treatment would actually work. As a result, he opted not to do it a second time.
For years, Witter patiently waited for an alternative treatment for his HCV. The effects of the disease took hold, leaving him depressed and almost suicidal. He did not see a way that he could regain his old life back, and he especially did not see a life for himself without the disease.
But in September of 2014, his doctor spoke with him about Harvoni, a new curative treatment that had a 99 percent success rate in clinical trials.
“When my doctor first mentioned it to me, I didn’t believe it because it was so completely different from the whole interferon ribavirin treatment that didn’t work for me,” Witter said. “The things he told me about it sounded too good to be true. The word cure is unbelievable to me that you can actually be cured of this thing that I’ve been dealing with for 15 years.”
Unlike the ribavirin/interferon combination therapy, the Harvoni regimen lasts a mere 90 days, taking one pill per day during that time period. Not only is the treatment simple and quick, but the side effects are nothing compared to what patients must suffer under treatment with interferon.
“I was able to really function while I was doing the 90 day treatment,” Witter said.
His waiting paid off tenfold when after only 30 days of treatment, his bloodwork came back completely clean. He continued the treatment for the full 90 days as recommended by his doctor, and was deemed cured as of February 1, 2015.
“My doctor told me that I was completely cured of HCV and my liver function was completely normal as if I had never contracted the disease at all. I contacted many people about it,” Witter said.
Shortly thereafter, Witter was able to regain aspects of his old life by working part time on the Broadway productions Aladdin and The Curious Incident of the Dog in the Nighttime. He is now more social and active than ever before, a pleasant change from the whirlwind of side effects that tore apart his life.
But how was Witter able to obtain the curative treatment so easily? Why was he not denied access to Harvoni like so many other patients with HCV?
Witter was lucky to have been informed about the treatment prior to its official release to the public by the FDA.
“The FDA approved Harvoni on a Friday, and Monday morning I called my insurance company and asked them about it. It was so new that they didn’t even have any data about it and I discovered that they denied coverage for the Harvoni because they didn’t have enough information,” Witter explained.
It was a setback, but Witter made the firm decision to not take no for an answer and pursued other avenues of receiving treatment.
“I contacted Gilead, the manufacturer, and they had a wonderful program called Support Path. The people there were just amazing,” he noted. “Not only in terms of guiding you through the process of trying to get the medication, but also once I got the medication, having a nurse on call that I could contact anytime to ask questions about it and get help throughout the whole thing.”
Within two weeks of contacting Support Path, Witter received a phone call from his pharmacy that the medication would be paid for in full.
“I was completely shocked. I could not believe this was happening to me,” Witter said. “Nothing like this had ever happened to me before. They basically said that I fit the criteria for someone who is either underinsured or uninsured to get the medication. My understanding through doing research online about Support Path is that they will try to bridge the gap if you’re underinsured, they will try to get the medication to the people that need it.”
Witter’s journey to a healthy life was a difficult one to say the least, but has taught him much about the availability of help to those in need. Additionally, it has taught him about the importance of conversation about this disease, and about the significance of the stigma attached to patients with HCV.
“I really feel like people do need to talk about it. So much of the stigma was lifted for me when I understood about the whole Baby Boomer thing,” Witter added. “There’s a lot of hope out there. The whole playing field has been leveled. It’s not a death sentence. There are treatment options.”
Witter now enjoys the comfort of knowing there is a cure, and he says others should rejoice in that fact, too. He advises patients to take responsibility for their care and fight hard when faced with insurance companies denying coverage to those in need.
“You just have to arm yourself with knowledge and figure out the best way to get the medication and to do the treatment. It’s definitely something that you can overcome,” he said.
For Witter, he has certainly overcome a great deal. But as they say on Broadway, the show must go on.