By Taylor Knopf
An estimated 110,000 North Carolinians are living with hepatitis C, and about 75 percent don’t even know it.
Terl Gleason, a 55-year-old tax preparer and Greensboro native, was exposed to the contagious blood-borne virus in the late 1980s, but didn’t know he had it until 2000. He never experienced any common symptoms such as jaundice or fatigue.
Gleason was having some health issues and suspected he had HIV. To his surprise, when he got tested to confirm it, he learned he had hepatitis C also. A quarter of people with HIV are coinfected with hepatitis C, according to the Centers for Disease Control and Prevention.
Gleason remembers exactly how he got infected.
“I got it from having fun,” he said chuckling. While he was never an IV drug user, Gleason said he snorted drugs with some friends as a young adult. The three people he shared drug utensils with also have been diagnosed with hepatitis C, he said.
Hepatitis C is a highly contagious virus that targets the liver. It’s spread by contact with infected blood. The most common way people get it today is through injecting drugs.
But before 1992, blood screening didn’t check for hepatitis C. So, it’s possible for someone who received a blood transfusion or organ transplant before that time to have acquired it without having “fun.”
Children born to infected mothers may also have the virus.
The disease can go undetected for years. That is why the CDC recommends all baby boomers — anyone born between 1945 and 1965 — be tested. It also recommends that anyone who has injected drugs be tested — even if it was only once, many years ago.
About 75 percent of people with hepatitis C develop a chronic infection that leads to liver disease, liver failure or cancer. So treatment is key. But up until a few years ago, treatment was also really difficult.
In 2009, Gleason tried treatment with first generation drugs that include interferon alfa. The regimen takes almost a year and comes with horrible side effects such as depression.
That treatment failed, which commonly happened.
But a lot has changed over the past decade and more effective and easy treatments have been developed.
In 2015, Gleason tried one of those treatments. He took three pills a day for 12 weeks and his hepatitis C was gone.
But treatment comes at a cost.
Widespread treatment options
In North Carolina, the number of acute hepatitis C cases has increased fourfold since 2009, and much of it is coming from the western part of the state, according to Zack Moore, acting state epidemiologist with the NC Department of Health and Human Services.
There are two classifications of hepatitis C: chronic and acute. Until very recently, the state only tracked acute hepatitis C, Moore said, meaning those cases that are newly identified with active symptoms. In January, it became mandatory to also report chronic cases, folks like Gleason, who find out through screening that they have the virus but are asymptomatic.
“What we do know about hepatitis C in North Carolina now is based on what we know from acute hepatitis C reporting, which paints a really worrisome picture,” Moore said, adding that the population of those with the virus is getting younger. The average age has gone down from 40 in 2006 to age 34 in 2015.
“The good news with hepatitis C — and this is new — is it’s treatable,” Moore said. “For a long time there were not effective medications, and those that did exist were really hard to take. Now you can actually cure it.”
During fiscal year 2016, Medicaid spent $91,902,863 on hepatitis C treatment in North Carolina, according to state DHHS spokesman Cobey Culton. But those medication options are getting cheaper, and insurance and Medicaid are covering them.
Gleason said the retail price for his treatment drugs were around $100,000, but he paid about $50 after insurance.
Help for rural docs, patients
In rural areas, many primary care providers don’t know about recommended screening and treatment options, or they don’t feel comfortable taking on complicated patients with hepatitis C.
So, the state Division of Public Health, UNC-Chapel Hill and Duke University partnered to offer the Carolina Hepatitis Academic Mentorship Program (CHAMP). Primary care doctors are mentored by professionals at the academic centers, and can talk through their first few patient cases with them.
There has been a lot of support for the CHAMP program from doctors in the western counties of the state, said Evelyn Foust, head of the Communicable Disease Branch in the Division of Public Health.
This program has been helpful to Marianna Daly, who is the Madison County Health Director and a primary care doctor at Hot Springs Health Program.
Daly received a FOCUS (Frontlines of Communities in the United States) grant from Gilead Sciences, Inc., a pharmaceutical company which manufactures one of the new treatments for hepatitis C. With the money, Daly has been able to conduct hepatitis C screenings in Madison County. Since she works for the only two medical providers in the county, Daly can reach a lot of the population.
She is using the grant money to screen baby boomers and those without insurance coverage. Daly started treating her first hepatitis C patient in March, under the direction of Michael Fried, UNC-Chapel Hill professor of medicine and UNC Liver Center director.
She started the CHAMP program with “boot-camp” training, and now continues video conversations with Fried every few weeks.
Daly’s first patient with hepatitis C came in for screening solely because of the CDC baby boomer recommendation. As an older patient with Medicare, that patient is receiving a $84,000 treatment for $8.
Daly said there is a waiting list to receive hepatitis C treatment at medical centers in Asheville, which is why CHAMP program is so needed.
“People aren’t getting into treatment, and the usual treatment sources are so overwhelmed that they want to make primary care docs comfortable with treatment of complicated cases,” Daly said.
As she gets more comfortable with managing hepatitis patients, Daly’s plan is to extend treatment to people in the local jail who have the disease.
In Daly’s FOCUS grant application, she included hepatitis C screenings at the county jail — conveniently located right next door to the county medical center. The goal is to screen inmates who will be at the jail for more than three days.
The local sheriff is on board with the plan.