Despite the CDC recommendation that every baby boomer be screened for hepatitis C, many aren't, according to a WebMD survey.
Almost half (268) of the baby boomers who responded to the survey said they hadn't been tested, and the majority (86%) said they didn't think they were at risk for the disease.
Hepatitis C is a viral infection that can lead to serious liver damage if it's not treated.
About 78% of boomer respondents said they didn't get tested because their doctor hadn't brought it up. And 74% said they passed on testing because they didn't have symptoms. But the virus often doesn't cause noticeable signs until it's advanced.
The survey of 709 WebMD readers ages 18 and older highlighted current attitudes and misconceptions around hepatitis C.
An estimated 41,000 people are infected with hepatitis C each year, and 2.4 million Americans have it. About 75% of people who have the virus are part of the baby boom generation, born between 1945 and 1965.
Why Get Tested?
Hepatitis C is a silent disease. Three out of four people who've been infected don't know they have it.
A blood test is the only way to find out if you've been infected before the virus causes serious health problems. If your test shows you have it, antiviral drugs can cure it in most cases and prevent future issues.
"It's so sad when we see patients who have been unknowingly infected for many years and come in with cirrhosis, cancer, or liver failure," says Sammy Saab, MD, professor of medicine and surgery at UCLA.
Understanding Your Hep C Risk
Baby boomers' chances of having hepatitis C are higher in part because they could have been exposed to it through IV drug use or unprotected sex before the virus was known about or anyone was being tested for it. Some also could have gotten it through a blood transfusion or organ transplant before widespread screening of the blood supply began in 1992.
While it was once uncommon among younger people, their odds of having it have risen sharply in recent years. One reason for that could be the increase in IV drug use caused by the growing opioid problem. Seventy-three percent of those surveyed correctly said that all baby boomers should be tested, but nearly three-quarters of survey respondents between the ages of 18 and 38 didn't think they were at risk.
"We are starting to realize that we have to start looking beyond baby boomers for screening," says Waridibo Allison, MD, PhD, assistant professor of infectious disease at UT Health San Antonio. "If we're going to make any impact on the hepatitis C epidemic in the U.S., we have to start focusing on these other groups."
In about 10% to 15% of people with hepatitis C, doctors can't find any risk factors. "We sometimes scratch our heads a little bit and wonder how these patients became infected," says Ira Jacobson, MD, director of hepatology at NYU Langone Health.
Why Doctors Don't Talk About Hepatitis C
In the WebMD survey, 80% of baby boomers with no risk factors said they would be willing to get screened if their doctor recommended it. But many health care professionals don't mention it. One reason might be that they're overwhelmed.
"They're worried about blood pressure, diabetes, cholesterol, and obesity. It's hard to throw something else on their plate," Saab says.
The stigma of the disease also may hold some doctors back. "It can be a little awkward to ask about risky behaviors like injected drug use," Jacobson says. "Even when the questions are asked, a substantial number of patients are reluctant to admit to it for fear of the doctor being judgmental."
He adds that doctors shouldn't be "bashful about asking."
Sources of Misinformation
Survey respondents knew most of the big risk factors for hepatitis C. About 87% named blood transfusions and IV drug use, and 71% correctly identified unprotected sex. But more than 40% missed everyday ways to get the virus, like sharing razors or toothbrushes with someone who has it.
And 47% of respondents weren't aware that hepatitis C can be cured, while about half incorrectly guessed that a vaccine can prevent it. Vaccines are available against hepatitis A and B viruses, but despite more than 25 years of research, no vaccine exists for hepatitis C.
"The problem is the virus mutates," Saab says. "You can't develop immunity against something that keeps on changing."
Some of the misinformation may come from the sources readers have used. Only 45% said they go to government health sites like the CDC, and only 31% visit nonprofit education websites like the American Liver Foundation.
"There's a lot of inaccurate medical information out there, not just with hepatitis C but across the board," Allison says. "What I say to patients is, 'Be careful of your sources. Stick to sources that are well known.' I guide people toward the CDC and American Association for the Study of Liver Diseases (AASLD) websites."
Even if your information sources are solid, don't try to diagnose yourself, Saab cautions. "It's better to talk to a provider."