Overcoming the Hepatitis C Stigma on the Road to a Cure
Oregon woman infected with HCV from a blood transfusion was at deathâ€™s door until she was cured by Harvoni.
“There are people, the minute you say hepatitis C virus (HCV), the first thing you can see in their face is, ‘oh you must have been a drug addict.’ It really bothers me because I’m not and never was, and that is not fair.”
Gail Green, a 63-year-old Oregon native, had just become a fairly new Christian in 1998 when her church was holding a Red Cross blood drive. Since she had never donated blood before, she decided to give it a shot.
Shortly after, she was contacted by the Red Cross and urged to see a physician immediately, because her blood showed signs of HCV and HBV.
From there she went to Oregon Health University — the largest hospital in Oregon – to see a specialist who gave Green her diagnosis.
“The specialists there were the ones who told me that I had hepatitis C, but not only that I just had hepatitis C, that I had genotype 1a,” Green said.
Genotypes 1a and 1b are the most untreatable forms of HCV.
“So not only was it hepatitis, but on top of that he uses the word fatal,” Green said. “Fatal is an emotional word for me. To say that you have this thing that’s going to be fatal and you have the worst one, boy that will take you to your knees.”
Although Green had prior knowledge of hepatitis A, she knew nothing about HCV, but as time went on and the internet progressed, certain parts of her disease became clearer.
Prior to being diagnosed, Green paid little attention to signs and symptoms because she could always contribute it to overexertion or normal everyday life.
“As you get older, some of the symptoms that you will experience if you have (HCV) went right along with getting old, or maybe having not such great eating habits,” Green said. “We’re talking heartburn, fatigue, aches and pains, that kind of thing. Maybe a little nausea in there, but nothing that you could put your finger on because you could always attribute it to so many other things. I never really realized that it was hemorrhaging my liver over the years, how much it was, until a train wreck one day.”
Green believes that she contracted HCV during a major surgery in 1980 when she received a blood transfusion, but she doesn’t believe that she will ever know for sure.
After receiving her diagnosis, treatment options were pretty sparse. At that time, interferon was being used experimentally and within the next couple of years, the combination treatment of interferon and ribavirin became available.
Green had a couple of friends who were suffering from hepatitis, and one friend in particular had received the combination therapy for a little over a year, but the treatment did little to help her disease.
“I mean it almost killed her, she had to do 13 months — the worst possible scenario,” Green said. “At the end of it, she was worse off than in the beginning.”
Since some patients reacted to the treatment in this way, Green was never offered that form of therapy.
“It was not an option because they knew that that’s who I would be also,” Green said. “If it’s going to make you worse than better, we’re not going there. I never even really had an option all those years, so they monitored me.”
A biopsy was taken early on and blood work was performed, but her health took a turn for the worst in 2014.
“It basically was the aftermath of my marriage falling apart. I know that to be true because I was so stressed,” Green said. “I lost everything, it left a huge whole in my heart, my life, my finances, and my health. I was stressed about all of those things and I believe that’s what brought the onset of the hepatitis C to the forefront and made me one very sick girl, all of a sudden.”
After her divorce, Green no longer had insurance. She was placed on the Oregon Health Plan, which only covered her visits to the doctor.
One day, Green’s physician told her about a new treatment called Harvoni that targeted her genotype. Although it was unclear if her health plan would pay for it, she received a prescription anyways.
“I was denied and it was a long process from there, which included my daughter, who is just an amazing young woman,” Green said. “A huge process, I’m going through to the governor’s office, the senator’s office, the federal, and then eventually directly to Gilead. They just were amazing. They jumped onboard with a plan that fit my needs and provided the medicine for me. There isn’t a thank you big enough for that.”
Gilead offers a financial program that helps patients who aren’t covered and cannot afford Harvoni’s high price tag. During this process, the Oregon Health plan required her to get 2 denials. She already had 1 denial when she was unable to get her prescription filled. However, the second denial required a liver specialist.
There are only a handful of liver specialists located in Oregon. Green started making calls to get an appointment, however, the waiting list was long and her time was starting to run out.
“The soonest that I could get in to see a liver specialist was the end of August and I would have been dead by then,” Gail stated. “That wasn’t an option for my daughter. I was so sick, I didn’t have the ability to even fight for myself, so she did it for me. I’m a very blessed woman, it’s really the truth.”
Eventually, Green was granted a 24-week treatment of Harvoni, but the treatment length was adjusted after seeing how well she was responding to the medicine. The treatment ended up only lasting 12 weeks, at which point her HCV infection was deemed undetectable.
Despite being cured, the treatment process was tough on Green, who was experiencing some negative side effects. Since she lived alone, both her daughter and niece came to stay with her.
“It was some extremely hard days,” Green remembered. “One of the things they told me is it would be best if I didn’t take Prilosec, a prescription I had been taking for years for heartburn. There was a possibility it would interact with one of the drugs in Harvoni, so my doctor recommended that, if I can, to stop it. So the day I started Harvoni, I stopped Prilosec cold turkey.
“That in itself caused me about a week of ‘oh my goodness I don’t think I’m ever going to sleep again.’ Then I had nausea, I had diarrhea, I had even more to the umpteenth degree, extreme fatigue. I slept, I think, for a week one time. So yeah, I struggled with it. Not every day, but it would be like bouts of it. A bout of nausea here and there, or whatever.”
Since being cured, Green has felt like she started life over again.
“Wow, it’s like oh my goodness,” Green said. “I used to be somebody’s wife, somebody’s mother, and somebody’s shop owner — you know whatever else I was. Now I’m kind of back to where I was when I first left home and was on my adventure. I kind of feel like that and strong. But now I have all this ammo in my belt, and I can approach (life) with a completely different perspective. I may not be able to be the girl who ran the tug boat at the port dock anymore, but I can certainly write about that. I’m just taking every day as a blessing, putting one foot in front of the other and keeping a positive attitude.”
As with anyone who faced difficult life challenges, staying positive can be trying at times. For Green, this was no different.
“We can all wallow in our own little pity party and I don’t want to be that girl, but there are times when you’re just so tired and sick and bombarded that you go to that place,” Green said. “I’m taking a class right now to try and help with those moments of still wearing that coat. For most of those years, I didn’t have tools in my belt for handling such things. I was unprepared for some of the things that can happen in life and now I have a little more knowledge and experience.”
Green reflected on close friends who were also diagnosed with HCV and how delaying getting checked can affect your outcome.
“I just lost a very close friend who lived 2 doors down from me who I played music with for 45 years,” Green said. “He was a drinker all those years and he never got checked. Less than a year ago, he finally got checked and found out he had hepatitis C. Really bad damage to his liver, besides the drinking that he did all those years. Financially, he was able to get the Harvoni, but he only got to take it 3 days because he was so sick and he died shortly thereafter. There is a point that it can be too late.”
Green urges people to get tested so they can stop the disease early to avoid the suffering she faced.
“It’s such a silent killer,” Green stated. “People think there is no need to be checked and that is a huge problem right now. Baby boomers in particular are highly susceptible to hepatitis C. This genotype and the disease can lay dormant for more than 30 years.
“I wouldn’t wish this on anyone. It can be so preventable if they just get tested. That would be my heart’s desire that people just go have a simple test done, get treated, and go on with their life.”