During her third pregnancy, Jamie Smith was itchy. Crazy itchy. Her obstetrician diagnosed her with cholestasis of pregnancy, a serious complication associated with liver disease. Her baby was at risk for being premature or even stillborn, so she was induced at 38 weeks.
“It said, ‘positive,’ ” she recalled, “And I’m like, ‘I don’t even know what hep C means.’ Wait, positive is a bad thing, right?”
At home, she searched “What is hep C?” online, which sent her down an Internet rabbit hole of common risk factors, including IV drug use, tattoos or piercings, having HIV or spending time in prison. She cried.
“I have lived the most boring life,” Smith said. “So it was a shock that I had this virus that comes with this stigma.”
Only later did her doctor connect the hepatitis C diagnosis to lifesaving blood transfusions she received in 1981, when she was a premature baby. Smith had lived with hepatitis C her entire life and exposed each of her three children. Women with hepatitis C have a higher risk of cholestasis of pregnancy, the liver problem that caused her severe itching.
Hepatitis C is the leading blood-borne disease in the United States, affecting at least an estimated 2.5 million Americans. Half of them don’t know they have it. The disease used to occur mostly among baby boomers. After World War II, a combination of increased medical procedures and recreational drug use drove the spread of the disease before widespread screening was available in the 1990s. But now people ages 20 to 39 are most likely to get infected, according to the Centers for Disease Control and Prevention, a shift experts attribute to the opioid crisis and needle-sharing. The CDC says adults with hepatitis C are at higher risk for severe illness from covid-19.
The World Health Organization aims to eliminate hepatitis C by 2030, but only three states — Connecticut, South Carolina and Washington — are on track to meet that target. Inadequate perinatal screening is a key problem.
Pregnant mothers with hepatitis C can have cholestasis of pregnancy and premature or low birth weight babies. A 2017 study in Sweden also showed an increased risk of the infant dying in the first few weeks of life. Still, a 2017 study found that fewer than 1 in 5 women at risk for hepatitis C get tested.
From 2009 to 2017, hepatitis C cases among pregnant women increased 161 percent. Last year, the CDC named hepatitis C as one of four emerging threats to mothers and babies. Although the disease usually progresses slowly, those infected, including children, can develop cirrhosis and liver cancer, along with a host of other health problems.
For years, most doctors have focused on just testing those at highest risk for the disease, especially drug users — which means cases like Smith’s can go undiagnosed. New CDC guidelines recommend all adults get a hepatitis C test at least once, and the American College of Obstetricians and Gynecologists (ACOG) recommended in May all pregnant women get tested.
“We know that risk factor screening doesn’t work,” says Denise Jamieson at Emory University School of Medicine in Atlanta, who reviews clinical practice guidelines for ACOG.
Obstetricians already routinely screen women for hepatitis B, HIV and syphilis, but not always for hepatitis C, even though hepatitis C is more prevalent.
“It doesn’t look like there’s good information about how these guidelines are being implemented nationally,” Jamieson said. “It takes awhile for people to actually implement the ACOG guidance. That’s part of the challenge.”
More than 1 out of 20 children born to mothers with hepatitis C will also contract the virus, according to a 2014 study. A 2019 study showed universal screening of pregnant women would detect hepatitis C in 33,000 women and at least 300 children a year, improving lives and saving costs.
Doctors have yet to find a way to prevent transmission from mother to child. There is no vaccine. Caesarean section and vaginal deliveries have equal transmission. Having an internal fetal monitor or having a mother’s water break for more than six hours before delivery also increases the risk of transmission. Breastfeeding is safe if the mother’s nipples are not cracked or bleeding.
There are no screening guidelines for children. In the past few years, a series of studies have documented poor tracking of children in states like Maine, Wisconsin, Ohio, Pennsylvania and Florida. In the past 10 years in Tennessee, 4,000 mothers receiving Medicaid had documented hepatitis C. Yet fewer than 25 percent of exposed infants were tested.
Barriers to treatment and the poor tracking of at-risk children have prompted some liver specialists to consider treatment during pregnancy.
There are no FDA approved treatments for hepatitis C during pregnancy, but Tatyana Kushner, a liver specialist at the Icahn School of Medicine at Mount Sinai, points to the encouraging safety and effectiveness of oral medication for hepatitis C during pregnancy in a small trial.
“We’re working toward hepatitis C elimination by 2030 and to not treat women during pregnancy is not in line with that goal,” Kushner said. “You have a person in front of you who has hepatitis C, who after delivery may lose health insurance, who you may not see again engaged in health care and you’re choosing to not treat. There’s also a risk of transmission to the baby.”
For now, Kushner said she and her colleagues take the view that the best way to eliminate hepatitis C remains testing all adults, vigorous public health policies to track and treat the infected and carefully monitoring the children of infected parents.
Ashley, a 32-year-old mother living on Maryland’s Eastern Shore, had liver inflammation and cholestasis during her first pregnancy in 2018, but her obstetrician did not test for hepatitis C. It was months after she gave birth to her son that thyroid problems led to a diagnosis of hepatitis C.
Ashley, who did not want her full name used because of the stigma attached to the disease, said her doctors suspect her tattoos were the culprit. She disagrees, but she doesn’t have any other explanation.
In December 2020, Ashley eventually started Harvoni, a medication that treats hepatitis C, but within a week, she discovered she was pregnant again. She followed advice to stop the medication, but worried constantly about passing the disease to another child.
“I didn’t have them leave any birth fluid on her. I had them bathe her immediately,” Ashley said. “And they were like, ‘It’s good for her skin,’ and I said ‘I don’t care, I just want her cleaned up. I do not want any of my bodily fluids sitting on her.’ ”
She is now waiting for her infant daughter to get tested, her infected son to get evaluated for treatment, and for a new specialist appointment to restart her own medication.
“January’s the soonest appointment I could get with a doctor because of covid,” said Ashley. “It’s been frustrating, it’s taking so long.”
Covid delays, including those caused by stay-at-home orders and some patients avoiding clinics, have compounded existing gaps in access to care. Although the number of reported acute infections has quadrupled since 2010, according to the Health and Human Services Department, the CDC reports that the number of people starting treatment decreased from 2015 to 2020, despite the availability of several well-tolerated cures.
Other barriers to hepatitis C care include expensive medication and variable Medicaid rules about which doctors are allowed to manage treatment. Some state Medicaid programs also require proof of extended sobriety or that the patient have significant liver scarring first.
The main cause of new hepatitis C infections is the opioid crisis. Over half of people with hepatitis C infections report past or current drug use, according to the CDC. To make matters worse, harm reduction programs — which provide clean needles, links to basic health care and referrals to substance treatment programs — have often had to cut back during the pandemic.
Even before the pandemic, women with addiction tended to avoid or not have access to traditional health care.
“The folks we see are stigmatized and discriminated against for their substance use,” said Genoa Clark, director at Choice Health Network, a harm reduction program in Tennessee. “Going to the health department or a primary care provider is often stigmatizing.”
Jane, who lives in eastern Oregon, was diagnosed with hepatitis C more than two decades ago when she was 19 after injecting drugs for two years. She couldn’t access treatment for many years because she had no health insurance. That changed when she became a nurse six years ago, but an unplanned pregnancy delayed starting treatment.
“The thought of your baby having anything carries a huge amount of guilt,” said Jane, who wanted to be identified only by her middle name to protect her and her child’s privacy. Fortunately, her son tested negative, and Jane, now 42, started treatment in 2021. But the stigma of hepatitis C remains.
“I don’t want to tell everybody, because people are going to judge,” she said. “There was always a sense of being different or gross. I’m so ashamed of what happened in my past. I’ve changed so much in my life.”
Christine Nguyen is a physician and journalist who writes about parenting, caregiving and health. Follow her on Twitter @christinenguyen.