Frequently asked questions about hepatitis C—what you should know
1. What is hepatitis C?
“Hepatitis” means “inflammation of the liver.” There are lots of things that can cause hepatitis, or liver inflammation, including certain medications, excessive amounts of alcohol, and other diseases as well as viruses. Hepatitis can be both short-lived (called “acute”) or ongoing (called “chronic”). Besides hepatitis C, there are other hepatitis viruses: A, B, C, D, E. Hepatitis A and B are vaccine preventable, and hepatitis D and E are very rare in the United States. There is no vaccine for HCV.
Hepatitis C (HCV) is a virus that is transmitted from blood-to-blood contact that leads to either acute or chronic infection, and can lead to long-term liver damage. If chronically infected, HCV infects the cells of the liver, where it reproduces. Over time, this can lead to scarring and as more and more scarring occurs, it can lead to cirrhosis and serious liver problems. Fortunately, HCV can be cured, preventing further liver damage and reducing the risk of developing liver cancer and other problems.
2. How is hepatitis C transmitted?
Hepatitis C is mainly transmitted from blood: When HCV-infected blood gets into you. The main way it is transmitted today is through the sharing of injection equipment: Syringes, cookers, cotton, and water. If HCV infected blood gets in/on any of these injection items (“works”), they can transmit HCV to the next person who uses them.
Hepatitis C is not commonly transmitted through sex, especially in HIV-negative heterosexuals. In people living with HIV, especially men who have sex with men (MSM), the risk is higher and sexual transmission of HCV does happen in this group. HCV has been found in the semen and rectal fluids of HIV-positive MSM; sexual practices that can lead to bleeding, including but not limited to fisting and rough sex toy play, can transmit the virus during sex.
3. What are the symptoms of hepatitis C infection?
The most common symptom is actually no symptom! Hepatitis C is called “The Silent Epidemic” for a reason: most people who get infected with it, never know they have it. People often want to know what symptoms to look out for to see if they have HCV, but the only way to know for sure is to test for it. That said, there are some symptoms to look for and that are important to know about so you can make choices for how to manage them. There are different symptoms for different stages of HCV infection and we break them up on the next page by the acute stage (early infection), chronic stage (living with the virus until cured) and end-stage with cirrhosis (after living with HCV for 20-30+ years for most). This list is not exhaustive, but includes the most commonly experienced symptoms.
You should talk with your provider if you experience any of these symptoms, or if you aren’t sure something you’re currently feeling is related to HCV. It’s better to be safe than sorry! Many of these symptoms can be managed and/or treated, and once a person is cured, many of them can go away or become much less problematic.
4. How do I test for hepatitis C?
Testing for HCV is not a simple matter of doing the test and getting a positive or negative result. It can be a little complicated. It’s also different from HIV, so that can be confusing as well. Hepatitis C testing is a two-step process: first, you take an HCV antibody test; and second, you confirm the result with a viral load (HCV RNA) test.
The HCV ANTIBODY TEST
The HCV antibody test will come up either negative or positive. If you’re negative, you probably don’t have HCV at this time. However, there’s a “window period” with HCV antibodies similar to HIV. It may take up to 6 months to develop HCV antibodies. Therefore, if your most recent exposure for HCV occurred in the past 6 months, you will need to retest when you reach that 6 month point.
If your antibody test comes back positive, then you may have HCV, and “may” is the important word here. That’s because about 25% (about 1 in 4) will clear hepatitis C on their own within six months of infection, but they’ll still always show “positive” on an antibody test. Therefore, you’ll need to get a viral load test too (see below).
However, if you clear HCV like this during early infection, then these antibodies cannot protect you from another hepatitis C infection. People can be, and have been, re-infected! So it’s important to protect yourself from re-infection.
The HCV VIRAL LOAD TEST
If you get a positive HCV antibody test, the next step is to get a viral load test to confirm it. If your last possible HCV exposure was at least 6 months ago and your test comes back negative, then you’ve cleared the virus. If it comes back positive, then you are chronically infected with HCV, meaning that you will have it for the rest of your life until you get cured.
The other possibility is to have a negative HCV antibody test result with a positive viral load test. This means one of two things: (1) you were very recently infected with HCV and your body hasn’t yet produced enough antibodies to come back antibody-positive; or (2) you have a weakened immune system (low CD4 cells) and your body may not be able to produce enough antibodies in response to HCV. In either situation, it’s important to talk with your medical provider about what these results mean and what next steps you should take.
5. Who should get tested for hepatitis C?
This one is now easy to answer: Everyone! In 2020, HCV testing is now recommended for everyone over the age of 18 years old without the need to ask about potential risk factors: You just get a test! Most people will need to only get tested once in their life to rule out an infection. For others, such as people who inject drugs, they will need to test routinely. For more information on this update see CDC Recommendations.
Risk factors
Anyone with risk factors for HCV should be tested on an on-going basis if the risks continued. The frequency of testing should be at least once per year, but you may want to do it more frequently if you are injecting drugs or are living with HIV and sexually active.
The following risk behaviors or potential exposures call for routine HCV testing:
• injection drug use, even if just once in your life
• intranasal drug use (sniffing from a straw)
• any incarceration
• getting a tattoo in an unregulated setting
• long-term hemodialysis
• child born to an HCV-infected mother
• blood exposures on the job, including needle sticks and/or blood splashes to the eyes
Past medical procedures
Today’s blood supply and blood products are very safe, as are organs for transplant. That said, HCV is a relatively recent discovery, we did not screen for it prior to July 1992. If you received any of the following, you should test for HCV:
• a blood transfusion before July 1992
• an organ transplant before July 1992
• clotting factors before 1987 (clotting factors have all viruses removed, including HCV by coincidence, hence the difference from blood transfusions or organ transplants)
Other conditions and circumstances
• HIV infection
• people starting PrEP (Pre-exposure prophylaxis)
• people on PrEP
• organ donors
• people with unexplained chronic liver disease
6. Can hepatitis C be cured?
Yes, and it is really pretty easy to cure these days! The old days of HCV treatment, where you had to take pills every day and do an injection once a week for a year and maybe get lucky and get cured, are long behind us. Today, people living with HCV take medications called “direct-acting antivirals,” or DAAs. These medications are all oral (pills-only), and are taken once per day for as little as 8-12 weeks (rarely 24 weeks). They are usually very well tolerated with few side effects, all of which are usually very mild. There really isn’t anyone who can’t be treated and cured; with these medications and even if your first course of treatment doesn’t work, there are options for re-treatment that you can try. Once cured, your risk of ongoing HCV-related liver disease will stop and you’ll likely reap a host of additional health benefits:
Benefits of HCV cure
• Negative HCV viral load for life
• Disappearance of HCV virus from the liver
• Normalization of AST, ALT, and GGT (liver function enzymes)
• Platelet increase in patients with thrombocytopenia
• Reduced risk of developing cirrhosis
• Reversion of fibrosis and, in some cases, cirrhosis
• Disappearance of varices (dilated blood vessels in the esophagus)
• Reduced risk of progression to liver cancer
• Reduced risk of decompensated liver disease
• Reduced risk of progression to liver failure and liver transplant
• Eliminates risk of transmission to drug using or sexual partners
• Eliminates risk of mother-to-child transmission
• Improved quality of life
• Reduction of psychological distress (anxiety, depression, etc.)
• Elimination of HCV-related stigma
• Lessens healthcare utilization and costs
• Return to the workforce and/or improved productivity
SOURCE: Rui Marinho, 2014
Acute Hepatitis C:
• Flu-like symptoms
• Fatigue
• Fever
• Joint or muscle pain
• Dark urine
• Clay colored stools (poop)
• Diarrhea
• Nausea/vomiting
• Loss of appetite
• Jaundice (yellowing of skin or eyes)
Chronic Hepatitis C
• Fatigue (mild to severe)
• Fever
• Depression
• Joint or muscle pain
• Nausea
• Loss of appetite
• Skin problems
• Cryoglobulinemia (blood disorder)
• Peripheral neuropathy
End-stage liver disease
• Fatigue (often severe)
• Nausea/vomiting
• Fluid retention (especially in the abdomen and legs)
• Jaundice
• Chronic pain
• Cognitive dysfunction/mental confusion
• Depression
• Loss of appetite
• Skin problems
• Cryoglobulinemia (blood disorder)
• Peripheral neuropathy
• Severe itching