Rick Nash has had hepatitis C his entire 29 years of life. He didn’t know about the infection until the summer prior to starting 7th grade. Rick wasn’t even a teenager, and he was already showing signs of advanced liver disease from chronic hepatitis C virus (HCV).

Rick acquired HCV when he was an infant. Approximately 6% of infants with HCV-positive mothers will acquire the virus perinatally: This is known as vertical transmission.  When Rick learned that he had hepatitis C, his mother was diagnosed too. Up to 4000 children in the U.S. contract HCV vertically every year.

According to NHANES-III, about 0.17% of 6-11 year olds (31,000) and 0.39% of 12-19 year olds (101,000) are HCV antibody-positive. This amounts to roughly 23,000 to 46,000 children in the US with HCV. Vertical transmission is the most common way children acquire HCV. Another frequent HCV transmission mode is via drug use, which is infecting adolescents at alarming rates.

Before going further, it is important to note that information about HCV in the pediatric population is disturbingly minimal. The best source of information comes from the practice guidelines by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) published in June 2012.  With no mention of the newest HCV treatments, the guidelines are outdated.

NASPGHAN admits that little is known about the pathophysiology of HCV in infants and children. “Infants may have certain defense mechanisms, possibly age-related, which explain the relative inefficiency of mother-to-infant HCV transmission.”[1] Nonetheless, HCV during childhood is still quite serious. There is a 26-fold increased risk of liver-related death associated with chronic HCV acquired in childhood.

Generally, HCV progression in children is not as severe or as rapid as it is in adults. However, significant fibrosis or cirrhosis may occur, as was the case with Rick. Pediatric liver transplantation from HCV is rare. Hepatocellular carcinoma (liver cancer) is extremely uncommon in HCV-positive children.

Cognitive impairment has been observed in children with HCV. This includes developmental delay, learning disorders, and cognitive deficits. Children are less likely than adults to have HCV extrahepatic manifestations; cryoglobulinemia and lymphoma have not been reported. Glomerulonephritis (a kidney disease) may occur in children with chronic HCV.

Hepatitis C in Society
Hepatitis C doesn’t just affect the body; it affects social systems. A child with hepatitis C has complicated social systems. The child’s parents may be worried. Kids may not have the maturity to deal with the shifting sands of living with a chronic, infectious disease. Keeping others safe is a tricky issue, and these issues differ if you are five versus fifteen years old. Conversations about sex and drugs are more complicated when you have a potentially infectious virus. Telling an HCV-positive kid to avoid alcohol is an even more serious discussion than it already is.

In the middle of all this is stigma. The public isn’t kind, especially to children living with infectious diseases. Zachary is a second grader in Virginia who is struggling with hepatitis C.[2]  He contracted HCV at birth and was adopted into a loving family. His family had no experience with HCV, and his mother learned all she could about it. Zach is now six, and has already undergone combination therapy with interferon and ribavirin, but didn’t respond.

Zach’s mother Kelly noticed a few changes relating to school. Zach revealed that he would be in trouble if he got a loose tooth at school. He was barred from using the school computer because of concerns that he might sneeze on the keyboard. All the students except Zachary were invited to join an after school wrestling program. This occurred despite the fact that Kelly has educated the teachers and officials at school about HCV transmission.

This is a common story. We saw it with HIV. Ryan White was kicked out of school because he had HIV. The family was constantly harassed and threatened. The Ray brothers, three boys with hemophilia, experienced the same horrors. They were banned from school in Arcadia, Florida. They fought and won the right to attend, but their house was burned to the ground because of arson. Blogger Shawn Decker was another hemophiliac who was dismissed from school because of his HIV status. He also had hepatitis B and C. He lived to share his story. Ryan White and two of the three Ray brothers are dead.  

Treating Children for Hepatitis C
Rick’s first glimpse at hepatitis C treatment was watching his mother go through it. “My mother would end up going on two hep C treatments while I was in school. Each treatment she went through gave me a glimpse of the insane side effects and pain she suffered from interferon. This wasn’t just my mother’s pain; it was also mine.” Eventually, Rick’s mother would be cured. Rick was not as lucky.

As shocking as it may sound, the only FDA-approved HCV treatment for children is peginterferon plus ribavirin. Children with genotype 2 or 3 need 24 weeks of treatment; everyone else endures 48 weeks. Response rates are slightly more than 50%. Genotype 1 patients have the lowest rates (47%).

Side effects are common and can be quite severe. Neuropsychiatric side effects can be difficult to manage. Thinking back to my two interferon experiences, I was a wreck. I can’t imagine what it would be like if I was a youngster and didn’t have the coping skills that come with maturity.

Rick’s first treatment began when he was 18 years old. As an adult, he now had access to all the medications, however, at that time there wasn’t much. He started with interferon, a difficult treatment that did not work. He made his way down the menu of HCV treatments, and is now on his fifth attempt, using Harvoni. In the meantime, Rick struggles with decompensated cirrhosis. He has portal hypertension (high blood pressure in the liver), esophageal varices, hepatitis encephalopathy (mental confusion caused by high levels of toxins in the blood), ascites (accumulation of fluid in the abdomen), and jaundice (build-up of bilirubin in the blood which causes yellow skin and eyes, dark urine, and clay-colored stools).

If Rick was still a kid, his choices would be to use peginterferon/ribavirin, look for a clinical trial, or wait. Some pediatric hepatologists will prescribe HCV treatment off-label, but getting insurance companies to cover the cost of off label drugs is challenging. When this article was going to press, there were at least two trials for kids, but there aren’t many slots. (See ClinicalTrials.gov for more information.)

Coping with hepatitis C is hard, but coping with it when your child has it, or you yourself are a child, takes monumental strength. In his young life, Rick Nash has coped with fragile health and five HCV treatments. “My mother didn’t know the risk when she had me, and she told me that in hindsight had she known, she would have been less likely to have taken the risk of having me. I told her that whatever the risk, I am glad of having been born, even if it meant I could have only done so having been given the virus. It is through this hardship I was able to better know myself, and better know my mother. Pandora opened the jar not knowing its contents, but within the dread, there was the greatest gift of all: hope.”

To keep up with Rick’s progress and see if he responds to Harvoni, visit Rick Nash’s Blog

Additional Resources
NASPGHAN Practice Guidelines: Diagnosis and Management of Hepatitis C Infection in Infants, Children, and Adolescents – Cara L. Mack, et al. Journal of Pediatric Gastroenterology and Nutrition Volume 54, Number 6, June 2013

PKIDS – Parents of Kids with Infectious Diseases – www.pkids.org

[1] NASPGHAN Practice Guidelines
[2] This story first appeared on Kim Bosseley’s blog

This article originally appeared in the HCV Advocate March 2015; reprinted with permission from Lucinda Porter and the HCV Advocate.