First questions

What is hepatitis C?

Hepatitis C is liver disease caused by the hepatitis C virus (HCV). The virus mainly lives in the blood, and in liver cells where it can cause damage.

HCV can cause liver inflammation, and scarring (known as fibrosis, or when more serious, cirrhosis).

This can reduce the liver's ability to perform essential functions. Liver damage from HCV usually takes many years.

How did I get HCV?

HCV can be caught if blood from a person with HCV enters your bloodstream.

The most common risk factors for this include:

Injecting drugs with shared, unsterilised equipment (including spoons, filters) and possibly from snorting drugs with shared straws or bank notes.
Tattooing or piercing with unsterilised needles or ink
Receiving a blood transfusion in the UK (before 1992) or blood products before 1985 in the UK
Healthcare workers who have a needlestick injury
Having unprotected sex with someone who has HCV

As with HIV, knowing how you caught HCV may prevent you infecting other people or becoming infected with another strain of HCV.

However, many people will never know how they caught HCV, especially if they have had hepatitis C for many years.

How serious is HCV?

Unlike HIV, you can be cured of HCV. If this happens, either naturally by your immune system or from using treatment, then HCV may not have any serious effect on your long-term health.

More than 45% of HIV-negative people, and up to 20% of HIV-positive people clear HCV without treatment within the first few months of infection.

Chronic hepatitis C refers to HCV infection that hasn't cleared in the first few months. This can have a wide range of outcomes.

Some people will never develop significant liver damage, some will have mild liver scarring, and 20-30% will develop cirrhosis.

In a smaller percentage of people, HCV can cause liver cancer and liver failure (when a transplant is needed). This usually only occurs after many years.

Because HCV generally progresses very slowly, there is usually plenty of time to decide on approaches to treatment.

HCV progresses more quickly in people who are also HIV-positive, and treatment is less successful compared to people who are only infected with HCV.

Will HCV make my HIV worse or more difficult to treat?

Generally, coinfection with HIV and HCV complicates each disease.

HIV causes HCV to progresses more quickly, although we don't know why this happens.

It is not clear whether HCV has an effect on HIV. Some studies reported that people with both infections did not see their CD4 count respond as well to HIV treatment. However, other factors, such as ongoing drug use, low access to health care, homelessness and poor nutrition make this a difficult question.

There are a few drug interactions between HCV and HIV treatments that you need to be careful to avoid. Luckily, although response rates to treatment vary, most people living with coinfection can be treated for both HIV and hepatitis C.

People with coinfection have a higher risk of liver damage from HIV drugs. However, the benefits of HIV treatment generally outweigh the risks from additional liver-related side effects. This is becasue a stronger immune system slows down liver damage from HCV.

How common is HIV/HCV coinfection?

In the UK, around 5% of HIV-positive people are coinfected with HCV (approximately 3,000 people).

This includes over 300 HIV-positive gay men in London and Brighton who have caught HCV sexually over the last three years.

Approximately 65,000 people in the UK are estimated to have HIV. Around 40,000 people are diagnosed. Approximately 250,000 - 600,000 people in the UK have HCV. Only 55,000 have been diagnosed.

In the United States more than a million people have HIV, and 25-30% also have HCV.

Worldwide, about 4 to 5 million people have both HIV and hepatitis C. Coinfection rates range from about 5% in the UK to almost 50% in Spain and Italy.

Globally, sexual transmission of HIV accounts for the majority of new infections each year, but injecting drug use originally drove the HIV epidemics in Eastern Europe and Central Asia.

Coinfection is common among injecting drug users, especially in countries where access to syringes and/or substitution treatment with methadone, buprenorphine or heroin is limited or nonexistent.

If it is likely that you caught HCV from drug use, you were probably infected with hepatitis C before HIV, since HCV is more infectious in blood, making it easier to catch.

What should I do first after a hepatitis C diagnosis?

The first thing is to give yourself time to let the news sink in. This can take a few days or weeks, or much longer.

Coming to terms with a new hepatitis C (HCV) diagnosis is important before you can make rational decisions about what to do next. This will usually involve finding out more information, which is why we have produced this guide.

You can get information from your doctor, from friends and support groups and from other sources including the internet.

As with HIV, learning you have HCV can affect:

Your own health. This will involve information about monitoring, treatment and things you can look at in your day-to-day life.
The health of sexual and drug-using partners. This will include information about transmission and how to minimise the risk of passing either virus to others.

Who should I tell?

You can take time in deciding who else you want to tell. It can help to talk about this to a friend, partner or relative that you trust, so that you don't deal with this in isolation. Who you tell after this is up to you.

When you first get an HCV diagnosis, only you and your healthcare professionals will know.

Your doctor can only inform other healthcare workers directly involved in your care.