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Hepatitis C Is Often Not Diagnosed Until Symptoms Occur


Nearly half of surveyed people with hepatitis C were not tested for the virus until they developed clinical signs and symptoms such as elevated liver enzymes or jaundice, according to a study described in the August 16, 2013, Morbidity and Mortality Weekly Report. These findings support U.S. guidelines calling for all "Baby Boomers" born during 1945-1965 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 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 a healthcare setting. Nevertheless, experts estimate that more than half of the approximately 4 million people with hepatitis C in the U.S. 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 U.S. Preventive Services Task Force did the same this past June. Numerous epidemiological studies have shown that hepatitis C is most common among Baby Boomers, who may have engaged in risky behavior many years ago. "You may not remember what you did in the 60s and 70s, but your liver does," CDC director Thomas Frieden quipped during a recent media briefing.

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 analyzed data from participants in the Chronic Hepatitis Cohort Study, which follows patients with confirmed chronic hepatitis B or C receiving care at 4 integrated healthcare systems in Detroit, Honolulu, Danville, PA, and Portland, OR.

Among 12,529 adult patients 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 were surveyed via postal mail or telephone during 2011-2012.

Participants were asked to choose from a list of reasons for HCV testing, with responses grouped into 4 categories; reasons were not mutually exclusive and respondents could choose more than 1:

  • CDC risk indications according to the 1998 guidelines, for example injection drug use or kidney dialysis;
  • Clinical indications, for example 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, for example testing prior to donating blood, as a qualification for health insurance, or a requirement of prisons, employers, schools, or the military;
  • Other miscellaneous reasons including recommendations from doctors or spouses, sex with a person with HCV, being from a country where hepatitis C is endemic, or suspicion that one had been exposed to HCV.

A total of 4689 hepatitis C patients (57.9%) responded to the survey. A large majority of respondents -- 78.1% -- were born during 1945-1965. More than half (56.1%) were men, 72.8% were white, and 19.4% were black. Almost all (98.1%) had health insurance (including 66.0% with private insurance and 32.1% on Medicare or Medicaid), 45.5% were employed, and 23.2% received disability payments.


  • The 4689 survey respondents reported a total of 7649 reasons for initial HCV testing.
  • 60.4% said their first HCV test was done in a physician's office.
  • Other reported test settings included blood drives, public health or specialty clinics, emergency departments, and inpatient facilities such as hospitals.
  • 2121 respondents (45.2%) said clinical indications were a reason for getting tested, with the most common being abnormal liver function tests (70.6%).
  • 1725 respondents (36.8) reported that their doctor recommended HCV testing.
  • 1045 respondents (22.3%) said they were tested because they had traditional risk factors -- overwhelming injection drug use (94.4%).
  • 781 respondents (16.7%) cited institutional requirements.
  • Looking only at the subgroup born during 1945-1965, proportions citing these reasons for testing were similar: 46.8%, 36.0%, 21.3%, and 17.4%, 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."

"Promoting U.S. 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."



JA Boscarino, SC Gordon, LB Rupp, S Holmberg, SC Ko, 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 
62(32):645-648. August 16, 2013.