A Patient's Long, Difficult Journey to a Cure for Hepatitis C
Author: Lauren Santye, Assistant Editor
With the birth of a brand new baby and a promising career in the balance, Jack Keegan found himself at a crossroads.
His constant lethargy mixed with aches and pains that spread throughout his body told him that something was seriously wrong. Suddenly, his vision of providing for his family and climbing the career ladder was in jeopardy after his doctor gave him a sobering ultimatum.
“He said, ‘Jack, if you don’t quit drinking you’re going to die,’” Keegan said.
The South Carolina resident would learn that the culprit for his underlying physical issues was hepatitis C virus (HCV). Keegan’s physician, James Kopp, MD, explained that when you have hepatitis, the damage alcohol does to your liver is like putting gasoline on a fire.
“So I went home,” Keegan said. “My wife had some beer in the fridge, I had some beer in the fridge. I used to drink every day. According to the surgeon general, I was an alcoholic probably 2 times over because I drank 4 or more beers a day. But I got the beer, opened it up, and poured it down the sink. I never drank again.”
HCV was a disease that Keegan, a native of Australia, knew nothing about. As a teenager in 1984, Keegan was living what he described as a “rough lifestyle” and associating with people that were older than him.
More than a decade later he would find out that these same people had died of hepatitis C, pinpointing when he most likely contracted it.
However, the symptoms associated with the disease didn’t appear until 1999.
“I had lethargy, aches, and pains and in 2000 my symptoms got worse. I was always tired and I had an internal back pain,” Keegan said.
Physicians speculated that he had Lyme disease. However, at the end of 2000 when he was only 33-years-old, Keegan tested positive for HCV. He had genotype 1a, the most stubborn and persistent genotype and the hardest to cure.
Keegan was immediately put on combination therapy of interferon and ribavirin for 48 weeks, which was extended to 50 weeks, to ensure that it eradicate the virus.
This combination is dreaded by patients throughout the HCV community, but at the time it was the only treatment available to him.
“The combination therapy of the interferon and ribavirin was brutal,” Keegan said. “It was like the flu times 10, like the worst flu you’ve ever had times 10. Unreal aches and pains, like someone hit you on the side of the head with a shovel.”
Unfortunately, the side effects reared its ugly head during his daughter’s first birthday party.
“I remember I was sitting in her new blow-up ball pit, with her smiling so big and I just had tears rolling down my face,” he said. “I didn’t know if I was going to live or die, or see my daughter grow up.”
Although the next 2 weeks that followed would leave him bed-ridden, Keegan was determined to beat the disease.
Unfortunately, the combination drugs weren’t working for him because he was a non-responder to therapy.
“I was put on interferon maintenance therapy to try and keep my viral load down,” Keegan said. “I took that for 7 or 8 years with a few required breaks and therapy, but every time the viral load just shot way back up and it wasn’t keeping it in check.”
The interferon maintenance therapy proved to be just as difficult. It took a toll on him more mentally than physically, making him feel horrible even though he was kind of used to the side effects by that point.
“Taking a drug that makes you feel like crap only slows you down,” Keegan said. “The disease is hard to rationalize, it can get you down really bad. It was my only option at the time though so I did it. I had to kind of extend my life as much as I could.”
Even though Keegan felt sick, he still had to keep soldiering on, getting out of bed and going to work as a sales representative in order to provide for his family. However, because he had made the decision to keep his disease a secret from everyone except his wife, it only added to his stress.
“I had a new career and I was going up the ladder, I didn’t want it to affect my career,” Keegan said. “I would have to go to a trade show and share a room with someone. I’d have to take my medicine with me and keep it chilled. I’d have to hide it and not let anyone see me in the summer time with my shirt off, because of all the bruises around my stomach where I was giving myself the injection of interferon. It bruises up pretty bad.”
He managed to hide his disease pretty well. At trade shows when customers and colleagues invited him to go out, he would give excuses like allergies or having to do some work.
“I just wanted to get to bed as quick as possible,” Keegan said. “So I guess I came across as a little anti-social. I hid it well. No one knew, and that’s the way I wanted to keep it.”
With the original combination therapy of ribavirin and interferon Keegan had a loss of appetite, which caused him to lose a lot of weight. This was the one thing that customers seemed to notice most.
“There’s 9 years I was on the therapies, keeping weight on was certainly a concern I constantly had to take into account,” he said. “I had to eat a lot of carbs to try and keep the weight on. The first year I lost probably 15 to 20 pounds being on the ribavirin. I didn’t lose any weight when I was on the cure.”
By then Keegan was so desperate for a cure that he volunteered as a candidate for any clinical trial he could possibly get on. This proved difficult, however, because he was adamant about being placed in a non-placebo trial.
He wanted to avoid the disappointment and devastation of not being cured if he was given a placebo drug.
It was in 2008 that Keegan was sent to Duke Medical Center for a biopsy, because there was concern of cirrhosis (the late stage of scarring of the liver). His doctor, John McHutchison, MD was a fellow Australian, and he thought, “Okay, I’ve got someone in my corner, someone I can relate to.”
Once the biopsy proved that Keegan indeed had stage 3 cirrhosis, Dr. McHutchison asked if he would donate some of his liver biopsy for research in order to find a cure for hepatitis.
Keegan had zero trepidations about the donation and happily obliged.
“I wanted to help anyway I could,” he said. “If that would help, and help cure me and others, I was all for it. I had no problem whatsoever.”
By 2009, Keegan had been referred to Robert Rhinedollar, MD, who had great success in getting his patients into clinical trials. Dr. Rhinedollar was insistent on taking him off of interferon as a result of debilitating side effects.
Keegan felt his only hope was by getting on a clinical trial, as the years in between 2009 and 2012 were riddled with uncertainty for him.
“I was just anxiously waiting for a clinical trial,” he explained. “Being a non-responder, having cirrhosis and wanting a non-placebo trial disqualified me from many of the ones that came up.”
But by late 2012, Keegan was notified of a new beta testing trial that was available from Gilead Sciences for a drug called Harvoni (ledipasvir/sofosbuvir). Researchers had previous success with other genotypes of HCV, so they wanted to see how it stood up against genotype 1a patients with cirrhosis.
“They wanted to really prove that the new drug was working, so they wanted non-responders with cirrhosis,” Keegan said. “It was perfect. I said get me on it, I don’t care what the side effects are just get me on it.”
In order to get on the trial, patients had to go through a lottery system and be placed into 1 of 3 testing groups.
“My doctor’s assistant stayed up to 3 o’clock in the morning to get me on as a candidate,” Keegan said. “There were a couple different regimens they had for the trial, I got the 12-week with the combination therapy with the ribavirin.”
Although Keegan is someone that can continue to stay positive, he said you need to be wary as well.
“I’m a very positive person. I was willing it to work, but you have to be cautiously optimistic and there is always a chance that it may not work,” he said. “I was hoping very much so that it would work, and I was doing everything I could mentally and physically to make it work. I think the power of the mind is very strong and you can do a lot of things with the mind alone and enable a lot of things to happen.”
Miraculously, after only 2 weeks the virus had become undetectable and still remains undetectable through today.
“It’s a huge burden off my back, I’m able to plan for the future more,” Keegan said. “I have some concerns still with my cirrhosis, but I don’t have a chronic incurable disease anymore. It’s gone, I’m cured.”
Besides being cured, Keegan’s experience with the combination therapy drugs has been a positive one.
“I barely even noticed the side effects of the actual cure,” he said. “It was nothing compared to the other therapies myself and others have gone through. It’s a walk in the park.”
This journey has been a long and painful one for Keegan and he dealt with it in different ways. He chose to read a lot of books about staying positive, the power of the mind, perseverance, and staying optimistic. He also utilized his good work ethic to approach both his career and beating his disease.
“You must have hope,” Keegan said. “But I believe hope is just a hollow, fragile word unless it’s accompanied by your inner strength and perseverance, and optimism and positive thought, you don’t have those in order for hope to live.”
Keegan also had many devoted doctors to help him get through the process to find treatments that would work for him.
“Without the dedication of my doctors and their support, I may not have been able to have made this journey,” Keegan said.
His advice for other patients with HCV, or those who suspect they may have HCV, is to face the disease head on.
“People need to get real and get tested,” Keegan advised. “This is a slow killer, but there is a cure now. Myself and others have gone through the hard part, it’s easy now. Get tested, ask the doctor to check for hepatitis C. If you have it, you change your lifestyle a little bit. Don’t drink, make those changes as soon as you find out, and get the cure so you can extend your life. It’s never too late to do something about this.”
Keegan remains driven by his belief that through the power of the mind, people can achieve anything.
“People can quit anything if they really want to,” he said. “The mind is incredibly powerful, you can do anything once you’ve made up your mind to do it. But don’t do it just because someone wants you to, because your mind hasn’t been made up.”
Keegan emphasized that the pull of certain vices can be a powerful obstacle to overcome, but is an issue many people must face head on at some point.
“That’s why people revert back to drugs, revert back to drinking or smoking cigarettes,” Keegan noted. “They’re not doing it for themselves, they’re doing it to appease someone and they don’t really want to do it. I quit smoking when my daughter was born because I wanted to do it, and I stopped smoking. I quit drinking because I found out I had hepatitis. I didn’t want to quit drinking. I’m Australian. It’s in our culture, but I had to. That’s my advice, anyone can do anything if they really want to and decide to.”
Although the cirrhosis that has occurred in his liver cannot be undone, the cure should help slow things down. He also tries to eat healthy, drink plenty of water, and continue to have a positive outlook.
He also hopes that his biopsy donation helped others suffering from HCV.
“I hope others don’t get to the point where I was with the cirrhosis,” he said. “Get tested. It’s a slow killer but there is a cure. Do it for yourself.”