Hepatitis C

I’m thinking of being tested for hepatitis C. What should I think about before I have the test?

It is important to have a confidential discussion before and after testing you for hepatitis C. This is a chance for you to talk with your specialist nurse and doctor about what it would mean have hepatitis C infection confirmed. This should allow you to make an informed decision as to whether you would like to go ahead.

Is discussion and testing confidential?

Counselling and testing is confidential. It is important to be clear what this actually means to you (or to a parent making a decision on behalf of their child) before you are tested.

How do I arrange to be tested for hepatitis C?

There are a number of ways in which you can get counselling and testing for hepatitis C:

• Your GP is usually your first point of contact. He/she may carry out testing or arrange for you to be referred to a specialist hospital.
• You can also talk to your midwife or health visitor
• Local drugs services and sexual health clinics can also offer testing

What are the tests to diagnose hepatitis C?

Blood is tested for:

Antibodies to hepatitis C

This is the first test that is done. It detects antibodies to hepatitis C in your blood. Antibodies are made by your immune system to help your body to fight infection. If your blood is infected with hepatitis C, your body will make antibodies to it and these can be detected.

If this test is positive it either means that you have hepatitis C now and are fighting it, or you’ve had hepatitis C in the past.

Babies born to a mother infected by hepatitis C may be antibody positive. This is because babies are born with maternal antibodies which they gradually lose as their immune system develops over the first 6 – 18 months.

HCV RNA PCR Test

If the antibody test is positive then you will have a second test called HCV RNA PCR.

This stands for hepatitis C virus ribonucleic acid polymerase chain reaction.

This tests for the genetic part of the hepatitis C virus. If it is detected then you have an active hepatitis C infection.

Antibody negative to hepatitis C

In most cases if you have a negative antibody test this means you haven’t been infected with hepatitis C.

Sometimes the test can be affected by some medical conditions, treatments and medicines. Your medical team will advise you if you requires a HCV RNA PCR test.

There is also a “window period” where your antibodies to HCV may not have developed. When you are infected with hepatitis C virus it takes between three and six months for antibodies to develop. During this time antibodies may not show up in the test. If you are in the window period you will need another test in six months’ time.

You are still infectious if you are in the window period.

HCV RNA PCR negative

A negative test usually means that you aren’t infected with hepatitis C. You may have had the infection and cleared it or never been in contact with it.

Sometimes the PCR test can’t detect very low levels of virus. In this case you may have two to three negative PCR tests taken a year apart. If these remain negative you are unlikely to have the infection.

Normally you will be referred to a specialist who looks after hepatitis C patients if you haven’t been already.

It’s normal to experience lots of emotions when you find out you have hepatitis C. There is lots of help available from your medical team, including your viral hepatitis nurse, and also from CLDF. You can contact the support team here.

It can help to write down all of your questions and worries so you can talk to someone about them. This could be your GP, your specialist consultant or CLDF.

You may have further tests including:

HCV viral load

This is a blood test to measure the amount of hepatitis C virus in your blood.

Liver function tests (LFTs)

These are blood tests which measure how well the liver is working and if there is any damage.

Alpha feto protein (AFP)

There’s a very low risk that hepatitis C can cause liver cancer. This test can check whether liver cancer is developing.

Other tests include:

• Ultrasound
• CT scan
• Liver biopsy

Find out more about liver tests and investigations

There have been a lots of developments in hepatitis C over the last few years. It is now a treatable and curable condition for many people. Some of the newer treatments aren’t yet available in children but it is hoped they will be very soon. Severe liver damage doesn’t usually occur in children and young people but it can become a problem as an individual reaches adulthood. It’s also possible for some individuals to naturally clear the virus, but this is less likely in children who became infected at birth or when they were very young. This section is going to be updated with new treatment information shortly.

It’s really important to always attend your clinic appointments. They’re essential to find out how the virus is affecting your liver and if you are having treatment, to monitor whether it’s working.

• Can I pass the virus to someone else?Hepatitis C isn’t infectious through normal day to day contact at school, college or work but children and young people should make sure others don’t come into contact with their blood.  They also need to protect yourself from coming into contact with other genotypes of hepatitis C.At school, college or work they should be treated no differently to anyone else. There are clear health and safety guidelines which give procedures on caring for anyone with blood injuries and these should be followed every time. Most of the rules are just good hygiene which we should all follow such as
• Keep cuts or grazes covered with a waterproof plaster until its healed
• If you can, wipe your own blood with a tissue or cotton wool
• Flush blood stained tissue down the toilet but cotton wool or other blood stained rubbish should be wrapped and placed in a plastic bag and thrown into a rubbish bin
• Clear any blood spillages or stained surfaces immediately with household bleach (mix 1 part bleach and 10 parts water).
• Anyone dealing with cuts, crazes or nose bleeds should wear gloves
• Wash blood stained clothes in hot water
• Sanitary towels should be placed in a bag before putting in the bin. Tampons should be flushed straight down the toilet. Make sure blood stains on the toilet are wiped away and cleaned with detergent.
• Don’t share razors, tooth brushes or nail clippers
• Drug users shouldn’t share needles, syringes or other drug paraphernalia

Choosing whether to tell people about your/your child’s hepatitis C status is a very personal decision and there is no right or wrong answer. There can be a stigma associated with hepatitis C and sometimes family and friends don’t fully understand what it is. Some people, however, find that support from family and friends is important and helps them to cope with the diagnosis better.

It is also up to parents when to tell children about their health. It is helpful that even young children receive some information about what they can do to prevent passing the infection on to others. This includes children not letting anyone touch their blood if they have a cut or a nose bleed and telling an adult when they are bleeding. Whether or not to tell a child’s school is also a difficult decision for some parents. There is a worry that the school may stigmatise or treat a child with hepatitis C differently but they should ensure confidentiality at all times.

There is a low chance – around 6 to 10 % – of a mother with hepatitis C passing the virus to her baby. If your child does test positive for hepatitis C the good news is that most children with hepatitis C usually grow normally and healthily like any other children and although it isn’t available for children at the moment, there are drugs which can cure hepatitis C can cure up to 90% of adults with hepatitis C. There is also a small chance that your baby may naturally clear the infection themselves.

In newborns the blood test for antibodies to hepatitis C isn’t that helpful as if the mother has hepatitis C, she may have passed the antibodies onto her child. In newborns and small babies the first blood test will be the HCV RNA PCR blood test. This can be done as early as six weeks of age but ideally is done after three months of age. The HCV RNA PCR test will need to be repeated six or 12 months later to confirm the result. If the PCR test is positive a second one will be required six to 12 months later to confirm the result. The child will be referred to a specialist at one of the three paediatric liver centres:

• King’s College Hospital, London
• Birmingham Children’s Hospital
• Leeds Children’s hospital

Children are unlikely to become suddenly ill due to hepatitis C but it’s important that parents or carers see a specialist to get the right information and to ensure children are monitored. After seeing the specialist once or twice, many children only need to visit the specialist centre once a year.