Hepatitis C is often not diagnosed until symptoms occur

Liz Highleyman
02 September 2013

Nearly half of people with hepatitis C are not tested for the virus until they develop clinical signs and symptoms such as elevated liver enzymes or jaundice, according to a US study described in the August 16, 2013 Morbidity and Mortality Weekly Report. These findings support US guidelines calling for all 'baby boomers' born during 1945 to 1965 to be tested, regardless of risk factors.

Over years or decades, chronic hepatitis C virus (HCV) infection can lead to serious liver disease including cirrhosis and hepatocellular carcinoma. Since 1998, the US Centers for Disease Control and Prevention (CDC) has recommended HCV testing for people with traditional risk factors such as injection drug use, receiving a blood transfusion before 1992 or accidental exposure in healthcare settings. Nevertheless, experts estimate that more than half of the approximately four million people with hepatitis C in the US are not aware that they are infected.

In August 2012, the CDC updated its hepatitis C testing guidelines to recommend that everyone born between 1945 and 1965 should get tested for HCV at least once, regardless of traditional risk factors. The US Preventive Services Task Force did the same in June 2013. Numerous epidemiological studies have shown that hepatitis C is most common among baby boomers, who may have engaged in risky behavior many years ago.

Stephen Ko from the CDC's Epidemic Intelligence Service and colleagues conducted a study looking at factors that prompted people with hepatitis C to get tested prior to the new recommendations.

The researchers analysed data from participants in the Chronic Hepatitis Cohort Study, which follows people with confirmed chronic hepatitis B or C receiving care at four integrated healthcare systems in Detroit, Honolulu, Danville, Pennsylvania, and Portland, Oregon.

Among 12,529 adults with hepatitis C who met the inclusion criteria, 10,380 were randomly sampled for the analysis. After excluding 1451 people who had died and 828 who could not be contacted, the remaining 8101 people were surveyed by postal mail or telephone during 2011-2012.

Participants were asked to choose from a list of reasons for HCV testing, with responses grouped into four categories; reasons were not mutually exclusive and respondents could choose more than one:

  • CDC risk indications according to the 1998 guidelines including injection drug use or kidney dialysis.
  • Clinical indications including abnormal liver function tests (elevated ALT or AST) or liver-related symptoms such as abdominal pain or jaundice (yellowing of the skin and eyes due to elevated bilirubin).
  • Institutional requirements including testing prior to donating blood, as a qualification for health insurance, or as a requirement of prisons, employers, schools or the military.
  • Other miscellaneous reasons including recommendations from doctors or spouses, sex with a person with hepatitis C, being from a country where hepatitis C is endemic, or suspicion that one had been exposed to hepatitis C.

A total of 4689 people with hepatitis C (58%) responded to the survey. A large majority of respondents (78%) were born between 1945 and 1965. More than half (56%) were men, 73% were white and 19% were black.

The 4689 survey respondents reported a total of 7649 reasons for initial hepatitis C testing.

More than 60% said their first test was done in a physician's office. Others reported test settings included blood drives, public health or specialty clinics, emergency departments and inpatient facilities such as hospitals.

About 45% of respondents said clinical indications were a reason for getting tested, with the most common being abnormal liver function tests (71%).

In addition, 37% of respondents reported that their doctor recommended HCV testing, 22% said they were tested because they had traditional risk factors (overwhelmingly injection drug use, at 94%) and 17% cited institutional requirements.

Looking only at the subgroup of respondents born between 1945 and 1965, proportions citing these reasons for testing were similar: 47, 36, 21 and 17%, respectively.

These findings suggest that "many HCV infections were identified only after the patient had become symptomatic", the study authors concluded. "Because a substantial proportion of HCV infections were identified after testing for clinical indications and few patients reported the 1998 CDC risk indications as a reason for initial testing, these data further support the CDC recommendation for testing all persons in the birth cohort of 1945-1965 in addition to risk-based testing", they added.

"Promoting US Preventive Services Task Force and CDC recommendations for testing and identifying strategies that help physicians implement HCV testing in their offices might help facilitate timely identification of HCV infection and reduce morbidity and mortality", they advised. "In addition to increasing testing in physicians' offices, other locations might be important for increasing the number of HCV-infected persons who are tested and referred to care."


Boscarino J et al. Locations and reasons for initial testing for hepatitis C infection – chronic hepatitis cohort study, United States, 2006-2010. Morbidity and Mortality Weekly Report, 2013.