Testing 123 hepatitis c testing for people who inject drugs

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Hepatitis C - why should we care?

Hepatitis C (hep C) is a huge problem for people with a history of injecting drug use. As you read this people in Australia and across the world are living with, and dying from, the health problems associated with long term hep C infection, a disease that is preventable! After at least two decades, the consequences of living with chronic hep C are finally beginning to show in unimagined ways, and the results are frightening to say the least. We (that is drug users) used to say “At least I don’t have HIV/ AIDS” because hep C was often less visible for many of us with hep C and it seemed much less “real”, less serious than being told you have HIV – a case of ‘out of sight, out of mind’. Every year the number of people dying of hep C related liver cancer and liver failure is increasing. Whilst treatment for HIV/ AIDS has come a long way, making it possible for most people to live with and manage their HIV, hep C treatment continues to be accessed by very few people with chronic hep C. Too many people either don’t get tested for hep C, or if they do, they experience many difficult barriers along the way. The very process of getting tested can be demeaning and demoralising. For many understanding the disease and how it progresses, let alone treatment options just seems to increase the barriers to understanding hep C .

At least 284,000 people in Australia have been exposed to the hep C virus. Of these people, approximately 212,000 are thought to have chronic hep C, at least 80% of which has been attributed to unsafe injecting drug use. There are approximately 10,000 new infections each year, 90% of which are due to unsafe injecting practices. With so many people in the community becoming infected with a preventable disease every year and so few people taking up the available treatment that could help them clear the virus, something is very, very wrong!

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So how can we change this?

Many people who inject or have injected drugs tell themselves that, “If I don’t have any equipment I just won’t use”. But this thinking, we know, just doesn’t work. Not having new equipment on hand just makes it more likely you will share or reuse someone else’s used equipment.

We must use new injecting equipment every single time we inject. We know NSPs are not always open, especially when you need them most! So keeping some on hand, safely secured, means when you need a new syringe you will be prepared and won’t run the risk of getting hep C from a shared fit.

Even those of us who have been tested and found to be hep C positive, many of us don’t know if we still have the virus in our system (or have cleared it naturally without treatment) or what strain of hep C we have (our genotype). Some of us were tested 20 odd years ago before we knew how serious having hep C could be. If you inject and haven’t been tested in the last twelve months, or you don’t know whether you have a chronic infection or your genotype, you should make an appointment with your doctor.

Over 212,000 people are living with chronic hep C and only 2% have ever been treated. This is shocking and would probably be unthinkable for many other chronic diseases! Hep C treatment can be a scary prospect. Appointments with doctors and nurses in hospitals can be very difficult for people with hep C: we are often treated with disdain and made to feel uncomfortable. But we can’t let this keep us away from lifesaving treatment. If you can, why not take someone with you for support. That way you get what you need and you might be less likely to experiences poor treatment if someone else is with you.

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The effects of chronic hep C on the body Doctors and researchers are discovering more all the time about how hep C affects the body, and all the information indicates that you need to know if you are living with chronic hep C. We are now learning that chronic hep C can cause health problems throughout the entire body, and not just the liver as most of us have assumed or been led to believe. For example, people with hep C can be more likely to develop infections - because if the body becomes run down fighting the hep C virus, you can become more susceptible to other infections. There’s only so much your body can cope with! This point is especially important for people who inject drugs. The risk of contracting endocarditis and spinal abscesses is increased for people who inject drugs particularly if they also have chronic hep C. Research is also starting to find that:

Diabetes is three times more common among people with chronic hep C - the virus alters insulin function and the body’s response to it; Antibodies associated with hep C can destroy your platelets, resulting in a low platelet count;

Hep C can also cause your body to produce unusual antibodies called ‘cryoglobulins’. These cause

inflammation of the arteries, which in turn can cause damage to your skin, joints and kidneys.

The purpose of this resource is to encourage you to get tested for hep C so you know where you stand and what your options are in relation to living with and/or treating the virus. A good testing experience should provide you with the information you need and an awareness of your rights around hep C. This will help you understand hep C and its effects on your body and life in both the short and long-term.

People who inject drugs have been living with the hepatitis C virus for long enough - let’s work to get rid of it by doing 3 things:

Use new Injecting equipment each time you use

Get tested regularly so you know your status

Get treatment when and if it’s appropriate.

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So, let’s start at the beginning...

Before we can talk about testing for hep C and what you should expect and what it all means it’s important to make sure that everyone understands the basics of hepatitis C and why we need to take this seriously.

What is a virus?

A virus is a very small organism, so small that about 30 million of them could fit on a pin head or the end of a needle. Viruses take over living cells, where they make copies of themselves, interfering with the normal job of the cells (which is to ensure the liver functions) and sometimes killing them.

What is hepatitis?

The hep C virus is an organism so small that about 30 million of them could fit on the end of a needle.

Image with permission from Russell Kightley Media

Hepatitis means ‘inflammation’ or ‘swelling’ of the liver. Inflammation is the body’s natural response to injury. Hepatitis can be caused by:

A virus;

Alcohol damage (from excessive and prolonged use);

Some toxic chemicals

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There are a number of distinct varieties of viral hepatitis. These include: A quick guide to A, B, C, D and E of viral hepatitis

Virus Type

Transmission

Vaccination

Hep A

Faecal-oral (or stool to mouth) - this is when food is eaten that has been contaminated by an infected person

Available

Hep B

Spread by contact with the blood and/or other body fluids of a person infected with the virus.

Available

Hep C

Spread by direct blood to blood (blood borne) contact with a person infected with the virus.

Not Available

Hep D

This virus can only infect you if you also have hep B as it uses the hep B virus to replicate itself. It is spread by contact with blood and/ or other body fluids of an infected person.

Not available but hep B vaccine prevents your risk.

Hep E

Faecal-oral (or stool to mouth) when food is eaten that has been contaminated by an infected person.

Available

The hepatitis C virus The hep C virus has been transmitted among people who inject drugs since at least the 1970s. It was originally known as non-A non-B because the specific virus had not been identified and so they did not have a distinct name for it. It wasn’t hep A and it wasn’t hep B so it was non-A non-B. Once identified it was called hepatitis C. The hep C virus is a member of the flavivirus family of ribonucleic acid (RNA) viruses. The virus reproduces by making many copies of itself (replicating itself) using the liver cells as the host for this replication process. This causes the liver cells to fight the virus: it is this natural immune response which causes the inflammation and eventual damage to the liver cells.

Hep C genotypes Your genotype refers to a particular strain of the hep C virus. Viruses are constantly changing to try to ensure their survival. There are six main genotypes of hep C (1–6), each of which can be further subdivided into subtypes (1a, 1b, 2a, etc.). Genotypes 1a and 1b (54% prevalence) and 3a (37% prevalence) are the most common hep C genotypes in Australia.

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How do you get hep C? Hep C is a blood borne virus - it can only be transmitted if the blood of an infected person gets into the blood stream of another person.

Injecting drug use & hep C

Injecting is the most efficient way to transmit viruses that are carried in the blood (that is why they are called blood borne viruses). The act of injecting punctures the body’s natural protection and safety system (the skin) for keeping viruses and bacteria out. Sharing equipment, therefore, is the biggest reason people get hep C. And not just syringes, but sharing spoons, filters, baggies, tourniquets - its basically any injecting paraphernalia that can have blood on it. ÎÎ For information on safe injecting practices see AIVL’S Guide to Safer Injecting.

Injecting drug users who have been in prison

People who inject drugs who have been to prison have a higher rate of hep C infection than those who have not been to prison. This is because new sterile needles are not available in prisons in Australia and so there is no safe way to inject or do tattoos and piercings. Just having been to prison is considered to be a risk factor of its own for hep C. “ The 2007 National Prisons Entrants Blood Borne Virus and Risk Behaviour Survey found that 35 per cent of prisoners tested positive to hepatitis C antibodies, 40 times higher than in the general population…”1 Unsafe piercing and tattooing

Tattooing and body piercing involve blood because you are penetrating the skin. If the tattooist or piercer does not follow Standard Precautions for infection control in their industry, you are at risk of contracting hep C and/or B plus HIV/AIDS, all other blood borne viruses.

Blood during sex

Hep C is only transmitted during sex if blood is present and the blood is then able to penetrate the skin and/or mucous barrier, (i.e. get into the blood stream) of the other person. For example if you have rough sex and one of you gets a tear on the penis or vaginal wall and the other person is bleeding, hep C can be transmitted.

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Mother to child transmission

The chance of transmitting hep C to your baby is very low: the risk is about 6% if the virus is detectable in your blood.

In Australia there are no known cases of breastfeeding transmitting the hep C virus to a baby. Cracked or bleeding nipples could pose a risk. It is advised to express and discard breast milk when the nipple is cracked and bleeding. If only one nipple is affected, you can feed your baby from the other breast.

Standard Precautions are guidelines about infection control. They assume that all blood and body fluids in all people are contaminated. This means that when your nurse puts on gloves to take your blood they are not judging you it is what they do for everyone. Its protects you as much as them.

Standard Precautions include:

Using gloves when cleaning up blood spills;

Carefully wiping up any blood spills with a paper towel, and washing the area with soapy water and then, if there is a possibility of bare skin contact, disinfecting the area with household bleach;

Completely covering any cuts or

People born in countries where hep C rates are high

Between 3-11% of people with hep C in Australia came here as immigrants from countries where hep C prevalence is high. In some of these countries reduced standards of medical care and/or lack of protocols have resulted in people having been infected during mass vaccinations and blood transfusions for example.

wounds with a waterproof dressing or a band-aid; and

Placing bloodstained tissues, sanitary towels or any other bloodstained dressings in a leak-proof plastic bag before disposing of them.

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How do you know if you have hepatitis C? The only way to know if you have hep C is to get tested.

Unless you are tested you cannot know for sure.

Acute hep C infection Approximately 25% of people develop flu-like symptoms when they become infected with hep C – fatigue, loss of appetite and muscle soreness. Their urine may go dark and their eyes and skin may go yellow. People with acute symptoms (particularly those with jaundice) have a much higher chance of clearing the virus during this stage (probably around 50-60%).

Chronic hep C infection The vast majority of people with hep C (approximately 75%) experience no noticeable symptoms.

However after hep C has been in your body for some years, and it can often be decades, it will have started to damage your liver and interfere with its function. This is when most people start to notice something is wrong with their health. People can feel a sharp pain when bending over if they are pushing on their enlarged liver for example.

You may notice you become easily tired or experience a range of non-specific symptoms that come and go. As the liver damage progresses you may notice:

Weakness/lethargy;

Loss of appetite and accompanying weight loss;

Breast enlargement (in men);

A deep red colouring of the palms;

Difficulty with blood clotting – especially problematic when injecting; and

Spiderlike blood vessels appear on the skin, most noticeably on the upper chest region.

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Some facts about the liver:

It is the second largest organ in the body;

It weighs 1.25kg on average in adults;

It is located under the ribs to the upper right;

A healthy liver is smooth and firm to the touch; and

Up to three quarters of a healthy liver can be removed and then recover.

What the liver does:

Filters the blood;

Processes food from the intestine;

Produces (bile, cholesterol, proteins & blood clotting agents);

Controls levels of fats and glucose in the blood;

Neutralises and destroys drugs and toxins;

Breaks down food and converts it to energy (carbohydrates and amino acids into glucose); and

Stores vitamins & minerals for the body to use.

LIVER

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What you need to know before you get tested for hep C Hep C is a notifiable disease Many viruses and infections, like measles, mumps, flu and hepatitis C, are legally notifiable. This means the Department of Health in your state or territory will be informed by a doctor when a person in their region has contracted the virus or the illness. No identifying information about the individual concerned is provided, only data such as age, sex, and the mode of infection – if known. This is the only information kept, and collated on a national level. This is so the Federal Government can keep track of numbers and make sure epidemics don’t break out. It’s not about you personally and you don’t need to worry about being identified as an injecting drug user to the government. The information is also used to decide how much governments should spend on services, treatments, medications, etc.

“All notifications are strictly confidential.”2

Informed consent

Pre-test Discussion This will cover everything that is going to happen, i.e. that a blood sample will be drawn, the specific test to be conducted on your blood sample and what the implication of a positive test means. It is intended to ensure you are able to give

Before you can be tested for hep C, you must give informed

your informed consent. It should help you

consent to the person who will do the test. A part of gaining

understand the implications if your results

informed consent is providing you with what is called the

come back positive, including information

pre-test discussion.

about acute and chronic hep C. It should

Informed means you know what test is going to be done, and what the possible outcomes could be from that test.

also include how it might impact on your work, your family and how you feel about yourself. After the pre-test discussion, if

Consent means you have indicated in any one of several

you feel at all uncomfortable about it, you

ways: written, verbally or by gesture. For example if you put

do not have to have the blood test done.

your arm, palm up on the pillow, the nurse has every right to

You can choose to go away and think

believe you are agreeing to be tested.

about it, and come back another time to be tested if you want to.

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During the pre-test discussion you DO NOT have to tell the person that you are or have been an injecting drug user or that you think you may have gotten hep C from injecting. You can be vague about this, and mention tattooing or body piercings. Doctors need to have a reason to believe you have done something that may have put you at risk of hep C for them to order a blood test and so they may ask. You just need to be prepared with an answer.

Once the pre-test discussion has taken place, a pathology form is completed and you are able to have the blood test. ÎÎ See AIVL’s Tips for Easier Blood Tests with Damaged Veins or How to Get Blood out of a Stone!

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Hep C tests and what they mean

The Window Period.

The antibody test

It can take up to three months for your

This is to find out if you have ever been exposed to the hep C

produce the antibodies. Antibodies are

virus and have produced antibodies to fight the virus. This

your body’s natural defence mechanism to

first test is essential.

foreign invaders such as a virus like hep C.

A positive test result means that antibodies were found, and means you have been exposed to the hep C virus at some time. This result does not necessarily mean you have an active hep C virus – you need a PCR test to tell you that (see explanation below on what is a PCR test).

body to respond to the hep C virus and

Most people produce enough antibodies in six weeks for the test to be accurate.

It is not common but some people may take up to six months for antibodies to be produced . This period is referred to as ‘the window period’ as it is during this

A negative test result usually means that a person has not

time that a test may not be accurate. It’s

come into contact with the virus, although the blood sample

like a window of time for the virus to go

might have been taken during the window period, before

unnoticed by the antibody test.

antibodies are detectable.

Newborn Babies The antibody test is not reliable with newborn babies. Babies born to mothers infected with hepatitis C can have a positive antibody test result without actually being infected (because at this age they are still carrying their mothers’ antibodies). This ‘maternal antibody’ usually only lasts 12 to 18 months, and it is recommended that testing of children not be done until after this time.

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Polymerase chain reaction (PCR) process Viruses are incredibly tiny and are often only found in small amounts in the testing process. The PCR process allows a single or a few copies of a piece of DNA/RNA to be amplified, generating thousands to millions of copies which can then be measured. That’s why it is called a chain reaction; the people in the lab do things to the tiny bit of DNA to make it multiply by copying itself over and over like a chain reaction.

Like a line of dominos falling after the first is pushed, one action in the lab can make DNA copy iself over and over again There are three different types of PCR tests:

For viral detection: a qualitative test - to check the virus is present in your body; For your viral load: a quantitative test - to detect how much of the virus you have in your body; For your genotype: to work out which treatment will best suit you if and when you need treatment.

The PCR viral detection test

The basic PCR viral detection test is used to determine

Liver Function Tests (Hepatic Panel)

whether a person has the virus; it is formally called the

A Hepatic Panel is a set of blood tests that

‘qualitative’ test. This test is especially useful in the case of

measure levels of liver enzymes, proteins,

someone who has an inconclusive hepatitis C antibody test,

and various other substances.

where Liver Function Tests are consistently normal, or when their Liver Function Tests are abnormal but there are other possible causes of liver disease.

It is recommended that anyone who is antibody positive have the PCR viral detection test done to see if they still have an active virus.

Liver function tests are used to help diagnose liver disease, assess the degree of liver damage and/or determine how well treatment is working.

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Another good reason to have the PCR viral detection test is that it can confirm if the virus is present during the window period. The virus can be detected in the blood as early as two weeks after infection using a PCR detection test.

The PCR viral load test The PCR viral load test is used to estimate the amount of hepatitis C virus circulating in the blood. It is formally called the ‘quantitative’ test. It is about the rate at which the virus is replicating itself. This test can help in determining the likelihood of someone’s response to treatment, particularly for people with genotype 1 of the virus, which can be a difficult to treat form of the virus. It is also used during treatment to check for an early response to treatment The PCR genotype test

The genetic make-up of the hepatitis C virus is highly variable, and this has led researchers to divide the virus into six genetic groups, or genotypes. This particular PCR test is used to determine the particular genotype/s a person has. That’s right, genotypes – you can have more than one genotype of hep C at the same time. This test is important – it can help determine the length of treatment, the type of treatment and help predict a person’s chances of responding to their treatment. For this reason, you must have a genotype test before commencing any treatment for hep C.

The waiting game A test result may take up to two weeks to come back, and this can be a stressful time. Try not to turn the waiting period into a “Well I might as well have one last binge before I find out”. If you do inject while you are waiting to get your hep C results make sure you follow AIVL Guide to Safer Injecting to avoid exposing yourself to hep C infection while you are waiting for your results.

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Getting your results

Post-test Discussion

Your results should be given to you in person, so if the

A post-test discussion must be had with

Doctor’s office rings up and says “We need to see you”, it

you regardless of your result. This will

only means your results are back. You should not assume

take you through the implications of your

the worst or that it automatically means the result is

results and what they mean for you. If you

positive.

are negative it’s a good time to reinforce

What a negative test means If you are a person who injects drugs a negative test means you’ve been incredibly lucky or extremely careful or maybe

those safer injecting behaviours. If you are positive you can talk about what further tests and/or treatments you might want to consider.

a bit of both. If you think you have been incredibly lucky ask

Regardless of your result, it is imperative

yourself what you might need to change about your current

that you continue to practice safe injecting.

drug injecting practices - particularly those practices that

This is because having one genotype of

may put you at risk of getting hep C. Do you need to stock up

hep C does not protect you from infection

on new injecting equipment? Do you need to be more careful

of another genotype, or protect you from

where or how you inject?

other blood borne viruses like HIV/AIDS or

If you have had a negative test result and you’ve been really

hep B.

careful it’s been worth all the care and attention you have paid to staying hep C negative. Keep it up and encourage your friends to follow your lead. ÎÎ For more information on Safer Injecting practices see AIVL’s Guide to Safer Injecting

What a positive result means A positive test means that you now have to live with the understanding you have a transmissable blood borne virus. Despite the fear it might invoke, it is good to know your hep C status. You can monitor your general health and your liver health in particular, and get all the information you need to make choices about your options and remain well and healthy.

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You also need to think very carefully about who you want to tell about your hep C status. You are not required to tell anyone, not even a health professional in routine health matters. They can ask and you can say you don’t know. Protecting their own health is their responsibility, and they should treat everyone the same. Knowing your status should make no difference to how you or your body fluids are treated!

If you are concerned you may have received a negative reaction or poor treatment because of your hep C status, you may choose to have separate doctors, particularly if you are considering treatment. There is nothing to stop you having a doctor for general health matters and one for your hep C monitoring and care. This can help protect any concerns you have about health professionals and their commitment to your privacy.

Discrimination Discrimination means treating someone differently (generally unfairly) than other people because they have a particular characteristic. Some examples are because they are female or because they have hep C or HIV. Sometimes discrimination is really obvious and other times it’s harder to notice – and harder to prove. Whether or not discrimination based on a certain characteristic is unlawful will depend on whether the government has passed laws that make it unlawful.

Even then, the discrimination will only be unlawful in certain circumstances. For example, it can be unlawful to discriminate in employment, in the provision of education or in providing a service.

However, it is generally not unlawful to act in a discriminatory manner towards a person because they are an injecting drug user; i.e. your neighbour has said that they do not want to have anything to do with you as you have told them about your injecting drug use, while this would be unfortunate and obviously unpleasant, it is important to remember who to disclose personal information to as once it’s out there you don’t know how people will react. ÎÎ For more information on your rights in relation to discrimination see AIVL’s resource “Discrimination: Know your Rights”

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Regular hep C testing For people who inject, a hep C test should be done every six to twelve months. This should not be looked on as a prevention measure - getting tested regularly and getting a negative result does not mean you can relax and become sloppy in your injecting practice. The only prevention measure is using new injecting equipment every time you inject and avoiding contact with anyone else’s blood while you are injecting. Regular testing is the only way you will know if you have contracted the hepatitis C virus.

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The future It is really important you don’t become obsessed with how you got hep C: “How did I get it? I’ve never shared a fit”. Unfortunately, you don’t need to have shared a fit to get hep C. The virus is very easily transmitted throughout the whole injecting process and most people never know exactly how and when they may have got infected. Knowing you have chronic hep C can be very empowering. It will allow you to monitor your liver on a regular basis and get treatment if and when it’s needed. Treatments for hep C are getting better and easier to tolerate all the time. Talk to someone at your local drug user organisation, if you have questions and/or visit AIVL’s web site www.aivl.org.au where you will find our “hepC-ciety”, which is an on-line space dedicated to providing the latest information for people who inject drugs and have chronic hep C. Remember, there are people near you who can support you. Reach out and let’s look after each other!

There is no blame, no shame; hepatitis C is a reality for people who inject drugs and while drug use remains illegal it will be virtually impossible to eradicate hep C completely. But as a community we can do so much better for ourselves and our friends. Always make sure we have more than enough injecting equipment, encourage people to slow down take their time and inject safely. Support each other to get tested; go with each other or babysit each other’s kids.

Let’s beat this virus and make it two out of two, after all we beat HIV as a community.

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Endnotes 1 DOHA (2010) National Hepatitis C Strategy 2010-2013 Australian Government Department of Health and Ageing pp 17 2 http://www0.health.nsw.gov.au/resources/publichealth/infectious/ph_doctor.pdf Reference materials http://www.aivl.org.au/files/hepctreatmentsprogram/Hepatitis_C_Transmission.pdf http://www.aivl.org.au/files/hepctreatmentsprogram/Making_Hepatitis_C_Treatment_Decisions.pdf http://www.aivl.org.au/files/hepctreatmentsprogram/Glossary_of_Common_terms_used_in_ Hepatitis_and_Hepatitis_C_Treatments.pdf http://www.hepatitisaustralia.com/__data/assets/pdf_file/0015/1347/Testing_Info.pdf http://www.ashm.org.au/images/HCV_Testing_portal/HepC_TESTING_POLICY_FORMATTED_V10.pdf http://www.medicalnewstoday.com/articles/172295.php http://www.medicalnewstoday.com/articles/181725.php http://annonc.oxfordjournals.org/content/14/9/1341.full http://hepatitis.about.com/od/complications/a/HCVComplication.htm http://www.ccjm.org/content/72/11/1005.full.pdf