For Patients Caregiver Tips and Advice For Medical Professionals

Hepatitis C

Hepatitis C is a disease caused by a virus that infects the liver.  The virus, called the Hepatitis C virus or HCV for short, is just one of the hepatitis viruses.   The other common hepatitis viruses are A and B, which differ somewhat from HCV in the way they are spread and treated.  According to the Centers for Disease Control (CDC), an estimated 2.7 million people in the United States have chronic Hepatitis C infection.

Learn more about recognizing symptoms, testing and diagnosis, risk and prevention.

Explore options, learn the questions to ask, and find out what to expect during treatment.

Learn about the challenges you may face, side effects and supporting your caregiver.

Because HCV infection usually produces no symptoms or very mild symptoms during the early stages, many people don’t know they have it until liver damage shows up – sometimes decades later – during routine medical tests. Some people who get HCV have it for a short time (up to six months) and then get better on their own. This is called acute Hepatitis C. But most people (about 75% – 85%) will go on to develop chronic (or long-term) Hepatitis C, meaning it doesn’t go away.

Whereas Hepatitis A generally gives rise to acute hepatitis, Hepatitis C results in chronic hepatitis in most patients. An easy reminder is C for chronic in Hepatitis C and A for acute in Hepatitis A.

In order to understand your Hepatitis C infection, it helps to have a basic understanding of how your liver works.  You only have one liver and it’s one of the largest and most important organs in your body.  Your liver is located behind the lower right part of your ribs, which help protect it. Your liver does the following important jobs to keep you healthy:

  • It acts like a filter to clean your blood by breaking down things such as alcohol, drugs (prescription, over-the counter and street drugs) and other harmful chemicals, and removes wastes.
  • It stores nutrients that you need – such as vitamins, fat and sugar from food – as well as other chemicals, and releases them into your bloodstream when your body needs them.
  • It produces some very important chemicals, like the ones needed to make your blood clot and heal after an injury, as well as a greenish fluid called bile that helps with the digestion of fats.

So what does all this have to do with Hepatitis C?  Hepatitis means inflammation, or swelling, of the liver.  When the liver is inflamed, it has a harder time doing its job.  Hepatitis C is just one thing that can cause inflammation of the liver.  Other things that can cause this include alcohol, some medications, and certain diseases.

Unless successfully treated with medication, chronic Hepatitis C infection can cause other serious health problems, such as cirrhosis, liver cancer and liver failure. However, with recent advances in Hepatitis C treatment we now have higher cure rates, shorter treatment times, and all-oral treatment regimens for most people.  If you’re at risk for Hepatitis C, speak to your healthcare provider today about getting tested.


Cirrhosis

Fibrosis is the first stage of liver scarring.  When scar tissue builds up and takes over most of the liver, this is a more serious problem called cirrhosis.  Many people assume cirrhosis means liver disease from alcohol, but anything that damages your liver over many years can cause it to form scar tissue.  As hard scar tissue replaces soft, healthy normal tissue the liver can no longer work well or work at all.  It can take a long time – about 20 to 30 years – for liver damage to lead to cirrhosis.
In the early years, people with cirrhosis often have no symptoms.  But over time, they can experience the following:

  • tiredness
  • weight loss
  • nausea
  • abdominal pain
  • severe itching
  • jaundice (yellow discoloration of the skin and eyes)

Eventually, people can have complications such as fluid in the abdomen and difficulty thinking clearly.  We used to hear that cirrhosis could not be reversed, but research in a number of liver diseases – including Hepatitis C – found that scarring of the liver can be improved with treatment of the disease that initially led to the damage.


Liver Cancer

Like all organs in your body, your liver can get cancer. When this happens, some of the cells in your liver reproduce faster than they should, leading to tumors and other problems.  People with Hepatitis C are at risk for liver cancer once they get to the level of cirrhosis.  As such, it’s important for you to have some type of test to determine if you have cirrhosis.  Remember that people with cirrhosis can feel fine and have no symptoms in the early stage.


Liver Failure

When someone has advanced liver disease and their liver is severely damaged it may no longer be able to function. The person may have yellow skin and eyes (jaundice), have fluid in their legs or abdomen (ascites), have bleeding from their stomach or esophagus (varices), or be confused (hepatic encephalopathy).  At this point, a liver transplant may be considered.

Without treatment, chronic Hepatitis C can be very serious.  But recent advances have made treatment shorter in duration, less difficult to tolerate and more effective.  It’s an exciting and hopeful time for people with Hepatitis C as treatment is rapidly changing for the better.


What is hepatitis C?


Hepatitis C is a virus that affects the liver. It is the leading cause of liver failure and end stage liver disease and is a major cause of liver transplants in the United States.

When first infected, a person can develop an “acute” infection, which can range in severity from a very mild illness with few or no symptoms to a serious condition requiring hospitalization. Acute hepatitis C infection is a short-term illness that occurs within the first six months after someone is exposed to the hepatitis C virus. For most people, acute infection leads to chronic infection but for reasons that are not known, approximately 15% to 25% of people clear the virus without treatment.

Chronic hepatitis C infection is much more common. It can last a lifetime and lead to serious liver problems, including cirrhosis (scarring of the liver) or liver cancer.


How common is Hepatitis C in the United States?


An estimated 3.2 million Americans are infected with hepatitis C according to the Centers for Disease Control and Prevention (CDC), yet a whopping 75% are not aware that they carry the virus.

Each year, more than 17,000 Americans become infected. The CDC reports that 15,000 of people die from hepatitis C-related liver disease annually, surpassing the death rate from HIV.

Hepatitis C has been aptly called the silent epidemic. A person can have the virus for years – even decades — before they experience symptoms and by that time, liver damage has often occurred.


Who is most at risk?


Baby boomers are most at risk. So much so, that recently, New York Governor Andrew Cuomo signed legislation that will require hospitals and health service providers to offer testing for the virus to all patients born between 1945 and 1965. The law took effect on January 1, 2014.

For more information on this legislation, visit http://www.governor.ny.gov/press/10232013-hepatitis-c-testing-law.


How is Hepatitis C transmitted?


Hepatitis C is transmitted through direct blood-to-blood contact. It can be contracted and spread through blood transfusions (performed before 1992), unprotected sex, intravenous drug use with dirty or shared needles, body piercings and tattoos using non-sterile ink and needles, and sharing personal items such as toothbrushes, razors and nail clippers. It is not spread through exposure to sweat, urine or tears or close contact with an infected person who sneezes or coughs.


Can Hepatitis C be spread through sexual contact?


Yes, but to a lesser degree than with other forms of hepatitis such as hepatitis B but even a small risk of contracting hepatitis C, not to mention other sexually transmitted diseases, warrants protective and safe sexual practices.

Who should get tested?
Since universal screening of blood and blood products did not occur until 1992, anyone who had a blood transfusion or organ transplant before that time should be tested. It is recommended that people be tested for hepatitis C if they were/are:

  • Born between 1945 and 1965
  • Exposed to blood and body fluids (firefighters, healthcare workers)
  • Sharing toothbrushes, razors, nail clippers or other personal items with an infected individual
  • Using and/or sharing needles to inject drugs
  • Receiving tattoos and body piercings with unsterile needles (including ink)
  • Women thinking about becoming pregnant
  • Born to an infected mother
  • Receiving long-term hemodialysis
  • Having unprotected sex with multiple sex partners or have a history of sexually transmitted diseases

What are the symptoms of Hepatitis C?


Most people initially have few or no symptoms for many years. When symptoms do emerge, they may present as fatigue, nausea, achiness, abdominal pain or flu-like symptoms.


Can Hepatitis C be cured?


Yes, you are considered cured if the hepatitis C virus is not detected when measured with a blood test three months after you’ve completed treatment. This is called a sustained virologic response (SVR) and data suggest that you will stay virus free indefinitely. And with newer drugs coming to market, cure rates of up to 90% have been seen in patients with hepatitis C.

Even more important sustained virologic response has been associated with lower rates of liver cancer, cirrhosis and all-cause mortality. This means that getting rid of hepatitis C allows individuals to live longer lives.


Will a person who has Hepatitis C ultimately need a liver transplant?


Undiagnosed and untreated hepatitis C can damage the liver to the point where a person could need a transplant. Not every person will develop advanced disease from hepatitis C.

But because we can’t always predict what will happen over time, the safest course for most people is to modify anything that can injure the liver before they have advanced disease. This includes curing the virus before there is extensive disease.


What is the difference between Hepatitis A, Hepatitis B and Hepatitis C?


Although they are all viruses that infect the liver, how you get them and how they can cause long-term health problems differ. Hepatitis A can be contracted through food or water that has been contaminated by fecal matter and raw shellfish. It does not lead to chronic disease and can be prevented through vaccinations. People generally recover within three to six weeks with no permanent liver damage.

Hepatitis B is also less common in the U.S. – affecting less than five percent of our population. It is spread through blood and body fluids, including saliva. There are also vaccines to prevent hepatitis B and newborns are vaccinated against this form of hepatitis before they even leave the hospital.

Unfortunately, there are no preventative vaccinations for hepatitis C, but early detection and advances in treatment can cure many strains of the disease.


Where can the public get more information?


The American Liver Foundation has a wealth of resources about preventing, screening/testing, treatment and living with hepatitis C, including a dedicated website hepc123.org, a national helpline – 1-800-GO-LIVER, on-line communities for people living with hepatitis C and a national database of liver specialists.

People don’t think about their livers as much as other organs but they should. Liver disease — and there are more than 100 types — is not something that just happens to alcoholics or drug users but some 30 million Americans, including children. Liver diseases have many causes including heredity, reactions to drugs or chemicals, lifestyle choices and viruses.

  1. Is it possible to have a positive antibody but not have the actual virus?
  2. What is my viral load? (Does my viral load mean I am more or less infectious?)
  3. What is my genotype?
  4. Should my partner also seek out testing to see if exposure has happened?
  5. What kinds of medication options are there for my genotype?
  6. Have I been screened for Hepatitis B and Liver Cancer?
  7. If I have had past exposure to Hepatitis B or have liver cancer, can you explain the black box warning I have heard about
  8. Do you need to know what my insurance company covers for treating Hepatitis C?
  9. If my insurance declines therapy – will you be doing an appeal or will you be having a specialty pharmacy assist with the appeal process?
  10. How long will therapy be?
  11. What are the possible side effects of treatment?
  12. Can we review the medications and supplements I am taking?
  13. Are there any medications which can cause an adverse reaction with therapy?
  14. What medications can’t I take while on therapy?
  15. Should alcohol be avoided while on therapy?
  16. Where can I find local support groups to connect to others whom have gone through therapy?
  17. Have many of the patients you’ve treated been successfully cured?
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Bob R.

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