Hepatitis C 101: Why Does Hepatitis C Often Go Undiagnosed?
Last updated: April 2023
Hepatitis C (HCV) is the most common blood-borne infection in the United States, at an estimated 3.9 million Americans infected.1-4 Yet, most are unaware they are carrying the virus. When left undiagnosed and untreated, HCV can cause severe damage to the liver, organ failure, and even loss of life. Around 13,000 people in the United States die from hepatitis C and its complications each year, and the disease is the number one reason for liver transplant surgery.
Of the estimated, 3.9 million Americans infected with hepatitis C, only around half of them have been diagnosed. Even more discouraging, fewer than 40 percent of those who have been diagnosed are receiving medical treatment, and only about 6 percent are treated with the most effective drugs for their condition.
So, why is hepatitis C so often undiagnosed and untreated?
Many patients with hepatitis C do not show symptoms
People with an HCV infection commonly go without noticeable symptoms for as many as 20 to 30 years. Those who are infected experience no significant symptoms when they first acquire the infection, and then they can remain symptomless for years, even while the infection is causing damage to their liver and other organs.
They feel perfectly healthy until the disease is rather advanced and has already caused severe inflammation and scarring of the liver. People then learn they are infected via one of three ways: they have a routine exam with their family practitioner, and their blood tests show elevated enzymes in their liver; they try to donate blood and are notified that they cannot donate, because they have hepatitis C in their blood test; or they eventually develop noticeable symptoms and seek care.
Even when tested, in more than half of all infected people, elevated enzymes or an abnormality in the liver only appears once serious damage has occurred.
Historically, many people were not tested
Previous testing recommendations only encouraged testing for those who were thought to be at risk. Those who were screened for hepatitis C included: anyone who had ever injected illegal drugs; people who had received an organ transplant or a blood transfusion before 1992, anyone who was given clotting factor concentrates made before 1987, children who were born to infected mothers, patients who were part of a long-term kidney dialysis program, people who were diagnosed with HIV, anyone with symptoms or who had an abnormal liver enzyme test, people who received an organ transplant from a donor who was later diagnosed with hepatitis C, and those who worked in the medical field and may have been exposed to the virus.
Although seemingly expansive, that criteria missed a large number of infected individuals, and they remain undiagnosed. Many people who are at risk are reluctant to identify their risk factors. Others are entirely unaware that they have an infection, because they don’t have symptoms, and they don’t know they are at risk. This is especially true with those who were exposed as infants or as children.
"Should I be tested for hep C?"
As a result of so many people undiagnosed and untreated for hepatitis C, the Centers for Disease Control and Prevention (CDC) recommends that all adults be tested at least once, with more frequent testing for those who fall into high-risk categories including: anyone with an abnormal liver test or an unexplained liver disease, people who received a blood transfusion before 1992, past or present injection drug users, people who have received kidney dialysis, anyone who has had multiple sex partners, people who have had a tattoo or body piercing, veterans (due to poor inoculation procedures), people with a history of heavy alcohol use, medical workers who handle blood, anyone who has received a clotting agent before 1987, and people who have tested positive for HIV.
Testing is simple and done through a blood test that looks for hepatitis C antibodies. If someone tests positive for hepatitis C antibodies, typically, a follow-up test is done to look for the hepatitis C virus in the blood stream, called a viral load test (an RNA or PCR test).
The benefits of early testing
In about 20 percent of cases, the virus disappears on its own within six months of the initial infection, but the remaining 80 percent develop into a chronic infection that can slowly destroy the liver. Since the hepatitis C virus usually doesn’t clear on its own, testing is the only way to ensure that those who are infected do not develop chronic hepatitis C.
Though there can be complications from a chronic infection, such as scarring and impairment of the liver, treatment can effectively slow the disease’s progression or even eradicate the virus altogether. Some of the newest antiviral drugs are effective in clearing the virus in those who previously had an unsuccessful treatment. These newer antivirals are causing fewer side effects, and they are taking a shorter time to put the virus into remission.
Typically, the younger someone is when they acquire an HCV infection, the longer (sometimes 25 years or more) it will take their body to develop severe symptoms, such as cirrhosis. However, someone who is infected at an older age, for example, someone who acquires the infection at age 50, may develop cirrhosis in half the time.
The likelihood of damage to the liver and other organs as a result of a hepatitis C infection decreases dramatically if it is diagnosed and treated early. Even in those who are tested and diagnosed long after they were initially infected, effective treatment reduces the chance of one’s cirrhosis developing into liver cancer.
Whether newly infected or advanced, testing, diagnosis, and treatment can improve the health of those living with hepatitis C.