You Asked, We Answered: Frequently Asked Questions About Hepatitis C

5 min read

While the hepatitis C virus (HCV) can affect everyone differently, there is common ground among community members. To find out more about how people with HCV cope with their condition, manage their symptoms, and understand treatment options, we conducted our 6th Hepatitis C In America survey. More than 400 people completed the survey and provided a unique perspective.

We have compiled answers to your most frequently asked questions and information from our survey to raise awareness about what life with HCV is like. Read on to improve your understanding of HCV from diagnosis and common symptoms to treatments and getting cured. All answers are reflective of our survey data.

Are my symptoms common? How common are long-term symptoms?

The most common symptoms of the hepatitis C virus (HCV) feel similar to the flu. According to our 2020 Hepatitis C In America survey:

More than 80 percent of people with hepatitis C experience fatigue
About 70 percent experience muscle aches
About 60 percent have trouble sleeping
About 60 percent experience joint pain

Hepatitis C also commonly affects mental health. According to our survey, nearly 70 percent of people experience symptoms of depression, anxiety, or mood disorders. Plus, more than 50 percent of people report having cognitive difficulties.

About 66 percent of survey respondents reported being worried about long-term side effects and symptoms of HCV. Liver damage from untreated hepatitis C can cause long-term symptoms. This includes brain fog, chronic fatigue, hair loss, and skin issues.

How was I infected?

Only 50 percent of survey respondents know how they were infected. The hepatitis C virus is transmitted through blood-to-blood contact. The most common method is through injected drug use.¹

The recent increase in injection opioid use has led to more young people getting HCV. Because of this, the Centers for Disease Control and Prevention (CDC) and other organizations recommend that all adults should be tested at least once. People who use injection drugs should be tested more often.¹

What do my test results mean?

To diagnose hepatitis C and monitor liver function, your doctor will order many blood tests. But many doctors do not fully explain what the results of these tests mean.

According to our survey:

Less than 50 percent of people report receiving easy-to-understand results from their doctor
Less than 40 percent know what “hepatitis C viral load” means
Only 35 percent know the difference between antibody testing and viral load testing

Antibody testing and viral load testing are diagnostic tests for HCV. Antibody testing tells you if you were infected at some point in your life. Viral load testing tells you if you are currently infected. Viral load testing is also used to track how well treatments are working.²

Your doctor will also perform regular blood tests to monitor your overall health. These include measuring levels of certain liver and kidney enzymes, your red blood cell and white blood cell counts, and the levels of sugars and fats in the blood.²

Why should I get treatment?

If left untreated, HCV can cause life-threatening liver damage and liver cancer. Getting treatment will help prevent long-term complications. It can also improve other aspects of your life, such as energy levels and mental health.¹

Older treatments for hepatitis C had low success rates and bad side effects, so it is normal to be wary of current treatments. According to our survey:

About 75 percent of respondents agree that HCV can be dangerous if left untreated
Only about 50 percent agree that it requires immediate treatment

Fortunately, current treatments cure more than 95 percent of HCV cases. Treatments only take 2 to 3 months and have much milder side effects than older treatments.

Read more here:
5 Other Reasons to Get Cured
New Versus Old Treatments for Hepatitis C
Get Treatment and Get Cured!
Why You Shouldn’t Wait to Get Treated for Hepatitis C
The Dangers of Untreated Hepatitis C

Where can I find emotional support?

Hepatitis C poses many stressors and challenges. It is common to feel emotional stress from the diagnosis and treatments. It is also common to have stress related to finances, relationships, or fear of the future. These stressors can lead to depression and anxiety. According to our survey:

50 percent of respondents say their depression or anxiety has gotten worse since being diagnosed
Nearly 50 percent feel they need emotional support

If you are experiencing depression or anxiety, know that they are common, treatable conditions. Many free support organizations offer services that can help you. Ask your doctor for a referral to a therapist or counselor. They can help you develop strategies to manage your anxiety or prescribe medicines to treat your anxiety or depression.

Read more here:
What Is Mental Health?
My Advice to Anyone Struggling with Hepatitis C
Anxiety and Hepatitis C

Where can I find help paying for treatments?

The cost of hepatitis C treatments is often too high for most people to pay. Many people living with hepatitis C do not have health insurance. Even with insurance, the out-of-pocket costs can be a large financial burden. According to our survey, about 1 in 3 people with hepatitis C cannot afford treatment.

Some financial assistance programs can help pay for medicines to treat Hep C. About 2 out of 3 survey respondents indicated that they never discuss financial assistance programs with their doctor. However, many drug companies, like Gilead and Merck, offer financial assistance and healthcare services. Talk to your doctor for help applying for these programs.

The 6th Hepatitis C In America survey was conducted online from April through August 2020. Of the 407 people who completed the survey, 190 were classified as “cured” (no longer having the infection) and 217 were classified as “not cured” (still infected).

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