It is estimated that millions of Americans have chronic hepatitis C. New infections have more than doubled since 2013, and stigma has played a huge role in determining access to testing and treatment for decades.
The Centers for Disease Control has now expanded federal guidance on testing to include infants who may have been exposed to the blood-borne virus. It is estimated that up to 40% of people with hepatitis C are unaware that they are infected, and if left untreated, it can lead to liver cancer, cirrhosis, liver failure and premature death. The Biden administration aims to eliminate hepatitis C in the United States by 2030.
To better understand how widespread hepatitis C is across the country, the CDC has expanded its recommendations in recent years about who should be tested for the disease. In 2020, the agency recommended that all adults 18 years or older be screened at least once in their lives and tested for the virus during pregnancy because the virus can be transmitted in utero and at birth.
On Oct. 31, the CDC updated that recommendation to include infants ages 2 to 6 months in an effort to provide more resources to families and slow the spread of the virus. If the test results show an active infection, the agency urges parents to continue to retest their children, consult with their pediatrician and monitor the virus until the child is 3 years old, when the child can be treated with antiviral drugs.
“If recommendations are implemented, more perinatally infected children will be identified and provided care,” the CDC report said. “This approach will increase the chances of timely treatment and subsequent cure, thereby reducing the risk of chronic hepatitis C.” consequences and limit further spread.”
Experts say universal testing could reduce the stigma of hepatitis C interventions, improve access to treatment and slow the spread of the deadly virus.
Kareena Wasserman, 33, told PBS NewsHour that many health care providers still have a long way to go to overcome the stigma surrounding hepatitis C infection and get patients the help they need. The mother of two, who ran the 2022 Chicago Marathon when she was eight weeks pregnant, said her obstetrician called her when she returned from a business trip later that year to tell her about her blood test results news. As Wasserman sat in the airport, her doctor told her she had tested positive for hepatitis C and needed to seek treatment from a specialist.
“‘I can’t talk to you about this anymore,'” Wasserman recalled her doctor saying.
Her doctor called for a follow-up visit, but the lack of understanding about how to proceed frightened her. Wasserman said she “cried my eyes out” as she was confused about the origins of the infection and grappled with the news of her diagnosis, either with her husband or alone. While Wasserman said she wanted to avoid “throwing my obstetrician under the bus,” she said, “I felt like my obstetrician didn’t believe that I didn’t know where this was coming from.”
Historically, hepatitis C infection has been associated with unhygienic blood transfusion practices, particularly among baby boomers. In recent years, infections have often been linked to injection drug use, which can exacerbate transmission when people share needles and there is a lack of safe needle exchange programs. But given the historical undertesting, experts say past estimates of hepatitis C in the United States may have underestimated the number of people infected with the virus. Testing has also slowed during the pandemic.
A decade ago, researchers developed an antiviral drug that had few side effects and was effective in nearly all patients. However, this treatment remains difficult to access, especially in communities where people are most vulnerable to the disease. At the same time, the stigma of contracting hepatitis C has translated into policies that deny treatment to patients, thereby increasing the risk of further infections.
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For years, testing protocols meant patients often had to make multiple trips to a doctor’s office or clinic before receiving a diagnosis, sometimes paying out of pocket. These barriers prevent many people from getting tested or finding out if they are sick, meaning their illnesses also go unchecked and spread further.
“An important step towards elimination”
Even in the race against time to reduce infections, uptake of the CDC’s testing recommendations has been slow, said Dr. Lynn Yee, an obstetrician-gynecologist and associate director of maternal-fetal medicine research at Northwestern University. There, Yee worked with pediatrician Dr. Ravi Jhaveri to increase efforts to test pregnant women who may have been exposed to hepatitis C and treat them, if needed, to prevent the spread of the virus to their babies.
“We are finding hepatitis C in pregnant women who were previously unknown, but the standard of care is still to treat it after pregnancy,” Yee said.
Wasserman began working with Yee a few weeks after learning of her diagnosis. When they first met, Wasserman said her mind was “racing” with the risks to her and her fetus. She asked Yee if she needed an abortion and worried about what the infection would mean for her family.
Wasserman said that during her third trimester, she took antiviral medications to cure her hepatitis C infection. When her daughter was born, she tested negative for the infection.
Jhaveri said he has been following pediatric patients exposed to hepatitis C for years. He said these updated CDC recommendations, which build on universal testing of pregnant women and support infant testing, “will make it easier.”
“If our goal is to eliminate hepatitis C, then our goal should really be to identify, treat and cure as many patients as possible, no matter their age or their background,” Jhaveri said. “We are moving toward An important step towards elimination.”
Wasserman urges other patients to get tested for hepatitis C, especially those trying to get pregnant. She wants health care providers to “be aware of your stereotypes” and practice medicine with “empathy and understanding.”
“If your patient has a high-risk test and needs to see a specialist, discuss it with the specialist, preferably in person rather than over the phone,” Wasserman said. No matter what, she said, people should not feel they have to hide from others or feel ashamed of their condition.
“I wish more women understood that this is not something you have to face alone,” Wasserman said. “It’s something my husband and I have to do.”