In early 2013, Carol Harms thought she was in the end stages of her life – a life forever changed in 1978 when she received a blood transfusion that carried a deadly virus.
She shared her story then with The Eagle, wanting to make people aware of the facts and myths about hepatitis C, a contagious liver disease that is generally spread through blood and has a range in severity of symptoms.
She also wanted to encourage people to get tested if they are at risk because many people can live with the virus and not even know it. Boomers especially seem to be at high risk, so much so that the Centers for Disease Control and Prevention recommend anyone born between 1945 and 1965 be tested. After two grueling and unsuccessful rounds of treatment, Harms didn't have much hope back then.
More than four years later, Harms is in remission, thanks to new antiviral drugs. She still wants to spread the word about testing. This time her message includes hope for those who are diagnosed because of the new drugs.
"There are a lot of people like me around the country in the same spot and we're grateful we're now getting treatment," Harms said.
There are vaccines to prevent two other types of hepatitis that affect the liver – hepatitis A and B – but none for hepatitis C. The three types of hepatitis are caused by three different viruses, have different modes of transmission and can affect the liver differently, according to the CDC.
Until this decade, only two types of drugs were approved by the FDA to treat hepatitis C: interferon and ribavirin.
Interferon, an injected drug, is highly toxic and created significant side effects that many patients, like Harms, couldn't tolerate.
"There were suicides back then because people had hepatitis C and heard how bad the treatment was," said Harms, who pored over medical literature and got involved with advocacy groups after being diagnosed with the disease.
In the past few years, other FDA-approved drug treatments have been hitting the market, ones that a Wichita physician refers to as being "like gold" when she visits with hepatitis C patients about treatment. Manufacturers are running commercials to encourage testing and seeking treatment with the new drugs.
"Part of why they are so precious is they have a 95 percent success rate if patients are compliant," said Dr. Maggie Hagan, an infectious disease specialist with Infectious Disease Consultants in Wichita. "The newer drugs are more tolerable, too."
The newer drugs are the result of understanding the disease much better and medical breakthroughs in treating and slowing the progression of HIV, another viral disease. Hepatitis C wasn't discovered until 1989. Now doctors know there are different genes of the virus called genotypes and they can prescribe treatment according to the genotype. Several of the new drugs are protease inhibitors, which stop a virus from infecting more cells and copying, or replicating, itself in the body.
The new drugs have something else in common with gold: They can be very expensive. A 12-week treatment can cost $90,000, Hagan said. Treatment regimens can vary from eight weeks to 24 weeks.
"The issue is getting insurance coverage," Hagan said. "In today's political climate, it (hepatitis C) can be considered a pre-existing condition and the treatment can be very expensive. It's something to think about."
Having an effective treatment is important, Hagan said.
"In the long run, they are saving themselves from a sentence of liver cirrhosis or cancer."
Hepatitis C, which can silently damage the liver for years before diagnosis, is a major contributing factor to both of those liver conditions. According to a 2016 report by the CDC and three national cancer organizations, nearly 50 percent of liver cancer cases in the U.S. are attributed to hepatitis C. The same report noted that with successful treatment of hepatitic C, patients can reduce their risk for liver cancer by 75 percet.
'Put your arm out'
In 2014, Harms was treated for three months with two of those new drugs, Olysio and Sovaldi.
"It's been one worry off my mind because so far the disease is in remission," the 62-year-old said.
Unfortunately, there's no cure or way to repair the liver cirrhosis so she's still living with a death sentence brought on by the virus, she said.
After her blood transfusion during a surgery in 1978, Harms was plagued with flu-like symptoms and extreme fatigue. In 1998 – nine years after hepatitis C was discovered and named – she was diagnosed with the disease. She was diagnosed with cirrhosis in July 2010. The disease has taken a toll, from leaving her unable to work to needing a caregiver, she said.
She also has another worry off her mind. "I finally talked every one of my family members, except one, into getting tested. I told them ... you can see what it's done to me.
"All you have to do is put your arm out and get a blood test."
Boomers, others at risk should be tested
The Centers for Disease Control and Prevention recommend talking to your doctor about getting tested for hepatitis C if any these applies to you:
▪ Born between 1945 and 1965. About 75 percent of the 3.5 million Americans living with hepatitis C today were born during that period.
▪ Have ever been an injection drug user, whether it was once or years ago.
▪ Treated for a blood clotting problem before 1987.
▪ Received a blood transfusion or organ transplant before July 1992, when donated blood products and organs started undergoing testing for the virus.
▪ Have ever received long-term hemodialysis treatment.
▪ Have abnormal liver tests or liver disease.
▪ Have been exposed to blood from a patient with hepatitis C through a needle-stick or other sharp object injury.
▪ Are infected with HIV.
▪ Were born to a mother who has hepatitis C.
Source: Centers for Disease Control & Prevention