Why testing newborns is critical for U.S. fight against hepatitis C

Millions of Americans are estimated to live with chronic hepatitis C. Incidents of new infections have more than doubled since 2013, and for decades, stigma has played an outsized role in determining access to testing and treatment.

The Centers for Disease Control has now expanded federal guidelines around testing to include infants who may have been exposed to the blood-borne virus. According to some estimates, as many as 40 percent of people who have hepatitis C are unaware of their infection, which can lead to liver cancer, cirrhosis, liver failure and untimely death if left untreated. The Biden administration has a goal of eliminating hepatitis C in the U.S. by 2030.

To gain a better understanding of how widespread hepatitis C is nationwide, the CDC in recent years has broadened recommendations for who should get tested for the disease. In 2020, the agency recommended screening all adults age 18 or older at least once in their lifetime, as well as testing for the virus during pregnancy since it can be transmitted in utero and at birth.

On Oct. 31, the CDC updated that recommendation to include infants between ages 2 and 6 months, an effort to connect families with more resources and slow the virus’ spread. If testing reveals an active infection, the agency urges parents to continue to retest their children, consult with their pediatrician and monitor the virus until age 3, when the child will be old enough to receive antiviral medication.

“If recommendations are implemented, more perinatally infected children will be identified and linked to care,” according to the CDC’s report. “This approach would increase the chances of timely treatment and subsequent cure that can mitigate the consequences from chronic hepatitis C and limit further transmission.”

Overcoming stigma

Universal testing could ease stigma around hepatitis C interventions, improve access to treatment and slow the spread of the deadly virus, experts say.

Kareena Wasserman, 33, told the PBS NewsHour that many health care providers have a long way to go to overcome stigma around hepatitis C infections and offer patients the help they need. The mother of two, who ran the 2022 Chicago Marathon while eight weeks pregnant, said she was returning from a business trip later that year when her obstetrician called her with concerning news about her blood test results. As Wasserman sat in an airport, her doctor told her she had tested positive for hepatitis C and that she needed to seek care from a specialist.

“‘I can’t talk to you anymore about this,’” Wasserman recalled her doctor saying.

Her physician’s phoned-in follow-up and lack of knowledge about how to proceed scared her. Left “bawling my eyes out,” Wasserman said she spiraled about how this infection could have originated and struggled with the news of her diagnosis alongside her husband – together and alone. While Wasserman said she wanted to avoid “throwing my OB under the bus,” she said, “I felt like my OB didn’t believe I didn’t know where this came from.”

Historically, hepatitis C infections were linked to unsanitary practices in blood transfusions, particularly among baby boomers. In more recent years, infections were often associated with injection drug use, which can increase spread when people share needles and lack safe needle exchange programs. But given historically insufficient testing, experts say past U.S. estimates of hepatitis C likely underrepresented how many people have the virus. Testing also slowed during the pandemic.

A decade ago, researchers developed an antiviral medication that bears virtually no side effects and is effective in nearly all patients. This treatment, however, has remained difficult to access, particularly in communities where people may be most vulnerable to the disease. At the same time, stigma around being infected with hepatitis C has translated to policies that withhold cures from people who are sick, heightening the risk of more infections.

READ MORE: Hepatitis C is ‘not something you wish on anybody.’ Biden has a plan to end it

For years, testing protocols meant a patient often needed to visit their doctor’s office or a clinic multiple times before receiving a diagnosis, sometimes paying out of pocket. Those hurdles prevented many people from completing their testing or finding out if they were sick, meaning their illness also went unchecked and spread further.

’An important step toward elimination’

Reception of the CDC’s testing recommendations has been slow-moving, even during a race against time to reduce infections, said Dr. Lynn Yee, an obstetrician and gynecologist at Northwestern University and associate chief of maternal-fetal medicine for research. There, Yee works with pediatrician Dr. Ravi Jhaveri to ramp up efforts to connect pregnant people who may have been exposed to hepatitis C with tests and, if needed, therapeutics to cure them, preventing the virus’ spread to their infant.

“We’re finding pregnant people with hepatitis C who were previously unknown, and yet, the standard of care is still to treat after pregnancy,” Yee said.

Wasserman began working with Yee a few weeks after learning of her diagnosis. During their first meeting, Wasserman said her head was “swirling” with the risks she and her fetus faced. She asked Yee if she needed to abort the pregnancy and was terrified about what this infection meant for her family.

During her third trimester, Wasserman said she took an antiviral medication to cure her hepatitis C infection. By the time her daughter was born, she tested negative for the infection.

For years, Jhaveri said he has followed up with pediatric patients who were exposed to hepatitis C. He said these updated CDC recommendations that build on universal testing for pregnant people and support infant testing “will make it easier.”

“If our goal is elimination of hepatitis C, our goal should really be to identify, treat and cure as many patients as possible, no matter how old they are or what background they have,” Jhaveri said. “We’re taking an important step toward elimination.”

Wasserman urges fellow patients to get tested for hepatitis C, particularly those who are trying to get pregnant. And she wants health care providers to “watch your stereotypes” and practice medicine while “being sympathetic and understanding.”

“If your patient tests for a high-risk thing and needs to see a specialist, talk through that,” Wasserman said, preferably in-person rather than over the phone. No matter what, she said, people should not feel like they have to hide their illness from others or feel ashamed.

“I want more women to understand that this isn’t something you have to face alone,” Wasserman said. “That’s something my husband and I had to do.”