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Hepatitis C is a pediatric disease now

The baby looked perfect: healthy term male, weight at the 60th percentile, normal exam. The mother, a 26-year-old diagnosed with hepatitis C virus (HCV) infection during her pregnancy, looked alternately hopeful and horrified as I explained what implications her infection could have for her baby.

“Most babies will be fine,” I explained. “Of all mothers with hepatitis C infection, just under 6% will pass the infection on to their babies.” Transmission rates are twice as high in infants born to women with high HCV viral loads or those coinfected with HIV. The risk of transmission from women with undetectable HCV RNA is almost zero. Unfortunately, this mother did not fall into that category.

Dr. Kristina A. Bryant
This scenario is increasingly common in exam rooms across the country. The Centers for Disease Control and Prevention (CDC) estimates that 3.5 million people in the United States are infected with HCV, but at least half do not know their infection status. Thanks in part to the heroin and prescription opioid epidemics, HCV infection is increasingly common among women of childbearing age. From 2009 to 2014, the prevalence of HCV infection among U.S. women giving birth nearly doubled, with the highest rates in Appalachian regions, according to the CDC. In Kentucky, where this mother and I live, HCV detection in women of childbearing age, defined as having a positive antibody or RNA test, increased more than 200% between 2009 and 2011, and the proportion of infants born to HCV-positive mothers increased 124%, according to the CDC. Referrals to my group’s practice for perinatal HCV exposure have exploded: some weeks, we’ll see as many as ten exposed babies in our outpatient office.

At that moment, however, I didn’t have time to be concerned about the numbers. My focus was one mother and her newborn baby.

“What if my baby is one of the unlucky ones who gets infected?” the mother asked, cuddling her infant. “What then?”

We know a lot about the course of hepatitis C in adults. An estimated 75%-86% of those infected will go on to develop chronic infection. Long-term sequelae include cirrhosis, liver failure, and hepatocellular carcinoma.

The course of HCV in children appears to be different. Twenty-five percent to 40% of vertically infected children will spontaneously clear their infection, most by 2 years of age. Occasionally, that might not happen until 7 years of age. Most who are chronically infected experience few symptoms, and fortunately cirrhosis and liver failure rarely present in childhood. In a large cohort of Italian children, half of whom were thought to be infected perinatally, less than 2% progressed to decompensated cirrhosis after 10 years of infection. According to the CDC, most children infected at birth “do well during childhood,” but more research is needed to understand the long-term effects of perinatal hepatitis C in children.

New antivirals have revolutionized the care of HCV-infected adults and now offer the hope of cure for up to 90%. None of these drugs are currently approved for use in children younger than 12 years, although clinical trials are underway. Because most cases of HCV in children are indolent, some children may not require treatment until adulthood.

July 28th was World Hepatitis Day and this year’s theme was Eliminate Hepatitis. To eliminate the problem of hepatitis C in children, pediatricians and others involved in the care of children need to get involved.

We need to know the scope of the problem

Since 2015, Kentucky has mandated reporting of all HCV-infected pregnant women and children through age 60 months, as well as all infants born to all HCV-infected women. At present though, there is substantial variability in state reporting requirements. We likely need a standardized case definition for perinatal HCV and national reporting criteria.

We need some clear guidance about testing during pregnancy

This should come from public health authorities, the American Academy of Pediatrics and the American College of Obstetricians and Gynecologists.

Jonathan Mermin, MD, director of CDC’s National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention, has said, “Women are screened throughout pregnancy for many conditions that threaten their health. An expectant mother at risk for hepatitis C deserves to be tested. Knowing her status is the only way she can access the best hepatitis care and treatment – both for herself and her baby.” Yet, routine hepatitis C testing is not recommended during pregnancy, in part because there are no established interventions to prevent mother-to-child transmission of HCV. Instead, women are to be screened for risk factors and tested if they are present. As we learned with hepatitis B and HIV, risk factor screening is hard and misses individuals who are infected.