In 2011, Carleen and James McGuffey had just moved to Colorado Springs from Texas when they found out Carleen was pregnant with the couple’s sixth child.
They were ecstatic.
But it wasn’t long after that they found out during a routine pregnancy checkup that Carleen had hepatitis C.
“It was a doctor that checked every box — it was purely accidental [that we found out],” James McGuffey says. “We kind of made fun of [the doctor] because she tested [Carleen] for everything. After that it wasn’t anything that was on the forefront of our minds — we weren’t that concerned about it. Even though they told her about it, they didn’t say anything [else] about it.”
It turns out Carleen had been living with the virus for more than 20 years. Since discovering that Carleen has hepatitis C, the McGuffey family has learned how common her experience is: spending decades unaware that a virus is silently destroying the liver, increasing the risk of liver cancer and cirrhosis. They learned how strong the stigma against the virus is — many people associate it solely with the use of intravenous drugs — the surprising number of people in the United States who carry it, the lack of understanding in the medical community about it and the difficulty many people face in obtaining treatment.
After watching his wife suffer through extreme pain, poor medical advice and a botched liver biopsy, James decided to take action last year. He began a campaign he dubbed Climbing for Carleen to raise awareness for liver diseases — in particular hepatitis C. The idea was simple: climb mountains and raise funds for the American Liver Foundation. Their work would help dispel misconceptions, promote testing and organ donation, and connect people with the support and treatment they need. It started with James and the oldest McGuffey child, Kaleb, climbing Mount Rainer in Washington last June. This June 5-8, 12-year-old Kendell McGuffey will join his father in the Liver Life Challenge Mount Shasta Climb as the youngest American Liver Foundation advocate to undertake the organization’s annual mountaineering trek in California.
“He’s just doing everything he can to be an advocate,” James says of Kendell’s philanthropic work, which has included knocking on doors to raise money for last year’s Liver Life Walk (Kendell is currently raising money for this year’s walk in Denver), tabling in front of businesses and, of course, training for climbs like the upcoming Mount Shasta fundraiser.
The McGuffeys often use the words “liver disease” when writing and talking about their work — a deliberate choice on their part.
“[When talking to people about hepatitis C,] you’ll say, ‘You need to get tested.’ And they say, ‘There’s no way I’d have that.’ That’s their first response,” James says. “[And then you ask,] ‘Have you ever been in a war? Been to the dentist? Had your nails done?’ And you go through that list and then they start thinking, ‘Well, there’s a possibility.’”
Hepatitis C (HCV) is a liver disease caused by a bloodborne virus. It wasn’t discovered and properly categorized until 1989. The virus can cause mild inflammation that lasts only a few weeks, to lifelong illness that can lead to liver cancer and cirrhosis (scarring of the liver). The Centers for Disease Control and Prevention (CDC) report that for reasons still unknown, about 20 percent of the population infected with HCV is able to clear the virus on their own with no treatment within the first six months of infection. However, most people with HCV develop chronic infection that persists throughout their lifetime. Even those with chronic hepatitis C rarely look or feel sick, meaning they rarely seek medical treatment. By the time there are noticeable symptoms — fever, chronic fatigue, decreased appetite, upset stomach, nausea, dark urine, grey-colored stool, joint pain, yellowing skin and eyes — it’s usually a sign of advanced liver disease.
“The CDC says that over 5 million have it, supposedly, not counting the prisons and the homeless, which they never include in their statistics, but it’s really more like 8 or 9 million people. It’s a big number,” James says of the incidence of hepatitis C in America.
The CDC says that Baby Boomers are the largest demographic living with hepatitis C, and while the reasons for this are not completely understood, it’s believed that many could have been infected by blood transfusions prior to 1992 when widespread screening of the blood supply began.
Then there’s transmission via unsafe injection practices, which do often come from drug use — but James says folks shouldn’t dismiss getting tested simply because they’ve never used intravenous drugs.
“Tattoos are a big, big deal,” James says, adding that this can be a particular problem in prisons.
In 2012, researchers with the CDC analyzed death certificates filed between 1999 and 2007 and found that hepatitis C-related deaths outpaced HIV deaths during the time period.
As for Carleen, she received a blood transfusion in 1988. But the stay-at-home mom and Sunday school teacher also had a past that included using drugs as a teenager in Houston.
“I never looked back, and decided never to share my past unless I thought doing so would help someone,” Carleen wrote this past March in a personal story for Hep, a publication that serves as an educational and supportive resource for those living with viral hepatitis. “I didn’t want my party days to be a badge of honor or a source of glory or pride.”
Upon being diagnosed in 2011, Carleen soon saw the burden of stigma — her father changed the subject when she told him, and while her mother would permit Carleen to speak about it, she only listened silently, providing no comforting words.
So sharing her story and being a vocal advocate for hepatitis C was never part of Carleen’s plan. But it was her family’s passion for supporting Carleen that made her realize telling her story was important.
“The whole family is excited,” Carleen wrote in her personal story. “My 12-year-old often draws me pictures in yellow and red, a nod to the hep C awareness colors. He also passes out pamphlets about hep C and is already signing up sponsors for a Liver Walk that is still months away. My 15-year-old daughter sat outside Wal-Mart to raise awareness. My 7-year-old went door-to-door sharing pamphlets from the American Liver Foundation. So, whether I like it or not, I am a patient advocate because God gave me this passionate, selfless group of people — my own family members who are determined to make a difference.”
When James speaks of the work that his 12-year-old son Kendell has been doing to raise awareness for HCV, his pride is unmistakable.
“He has no shame,” James says. “For the Liver Walk [coming up] in August, he’s knocked on doors and raised $800 or $900, like, six months before the thing. He’s not at all embarrassed to say hepatitis C — I’m not either, but we still have to use wisdom when we’re talking with people and trying to communicate about fundraising. When you say hepatitis C you can see it,” James says of the look that crosses people’s faces. “They haven’t been educated about it. That’s what it boils down to.”
As for Kendell, he says there was some fear when he began campaigning.
“I thought that at first if they’re going to be negative, what will they think if they know that my mom has hep C?” he says. “But you just keep asking and you just keep raising more awareness.”
For the McGuffey’s, watching Carleen’s struggle has been too personal, too real to be silent about. After she gave birth to the youngest son, Kyle, Carleen underwent a liver biopsy later that year to determine the damage that had been done to her liver after more than 20 years with HCV. What happened next would shape the next few years for the family.
During the routine outpatient procedure to obtain a small piece of Carleen’s liver for testing, the surgeon unknowingly nicked an artery. Carleen woke up in severe pain, but for hours no one could pinpoint why. It was the next day at around 11 a.m. when they discovered Carleen was bleeding internally.
James says fixing the problem was far riskier than the procedure that led to it, and Carleen had to endure numerous nights in the ICU and two procedures to repair the internal bleeding. She was essentially bedridden for a year.
The effect was palpable for the family, especially with a new baby in the house. Kyle was only 6 weeks old when Carleen’s biopsy went awry, and Carleen was unable to hold him, let alone breastfeed him.
“My dad and my aunt honestly didn’t let us on to everything that was happening until later, so I didn’t know it was that big of a deal until after they came home and then we started realizing she almost died,” remembers 16-year-old Kelsey. “The whole process afterward was a bit of a struggle because my mom wasn’t able to help out as much.”
James says that the family has been fortunate that his small garage door business has been relatively self-sustaining in the time since Carleen’s diagnosis and illness. But even with income to keep the family afloat, getting the medication Carleen needed to treat the hepatitis C virus was complicated.
Late last year, a company called Gilead Sciences released a new hepatitis C drug called Harvoni, which has a cure rate of more than 90 percent of those infected with hepatitis C.
However, in the U.S., Harvoni can cost as much as $1,000 a pill, totaling more than $90,000 for complete treatment depending upon the prescribed regimen, which is often eight to 12 weeks. Media outlets such as The New York Times and the Wall Street Journal have reported that insurers are denying many patients access to the drug, deeming it medically unnecessary because their livers aren’t scarred badly enough.
“It’s a crazy thing because Medicare/Medicaid right now are refusing to [provide Harvoni] unless you have cirrhosis and you’re dying, then they’ll give you the medicine, which is totally nuts because the majority of people on Medicaid/Medicare are the poor,” James says.
But it’s not just Medicare and Medicaid — on May 26, The Wall Street Journal reported that two women were suing Anthem Blue Cross for refusing to pay for the Harvoni treatment.
“My doctor applied on my behalf three times and he was denied three times,” Shima Andre, one of the women, told The Wall Street Journal. “My liver doesn’t have any damage yet, but that’s the whole point — I want to keep it that way. The drug would prevent the damage that the insurance company wants me to have before they approve the treatment. It’s backwards. “ To further complicate the situation, there are six different strains — genotypes — of hepatitis that each respond differently to treatment and require different lengths of treatment.
Older treatments for HCV included interferon shots, which are self-administered three to five times a week for as many as 48 weeks. The side effects for these treatments can be unbearable for some patients — some report extreme mood swings, loss of hair and flu-like symptoms — leading them to stop taking the drug.
With Harvoni, the reported side effects are far milder and the treatment regime shorter, but the cost seems to be encouraging health plan providers to try to control who has access to the new drug.
The McGuffeys dropped their insurance and were able to eventually obtain Harvoni through Gilead’s Support Paths program.
James says he’s keeping faith that the medicine will work for Carleen and will clear the virus from her system. He says they can see an improvement already — she’s taking fewer naps than she used to. Nevertheless, they will keep working to spread awareness about hepatitis C. They have plans to climb a volcano in Mexico this summer, and hope to travel and climb abroad and see if they can take their fundraising work to other countries that need help.
There’s even talk of a cross-country excursion with the whole family in tow, stopping at different cities and setting up opportunities for people to get tested for HCV.
“[Carleen] said the other day, ‘Never would I have believed that you’d be the one who’d get our kids involved in service-oriented work,” James says with a laugh. “And I didn’t either, but it’s becoming more and more of a passion every day.
“Here we are, we’re a big family — not the typical people that would ‘have hepatitis C,’ so how can we make an impact?” James asks. “I think we have the story, I think we have the passion now to encourage people and help turn lives around. And so that’s what we’re doing. Mountain climbing is just one part of that, but at the end of the day, what is our goal? It’s to encourage people. It’s to get up out of ourselves and try to make people that don’t have any support feel loved and tell those people it’s gonna be OK.”