cirrhosis Archives | Hepatitis NSW
NSW HEPATITIS INFOLINE

Media Release: Hepatitis NSW – 30 Years of Support and Service to the Viral Hep Community

Media Release: Hepatitis NSW – 30 Years of Support and Service to the Viral Hep Community

30 Years of Support and Service to the Viral Hep CommunityHepatitis NSW turned 30 on November 21, 2021. To celebrate our inception, growth, and three decades of service and support to communities affected by viral hepatitis, an event was held on December 13, giving the community, our members, supporters, volunteers, partners, and staff – past and present – an opportunity to mark the occasion.

Attended by our founding patron, Professor Geoff Farrell of Westmead Hospital, the evening included congratulatory messages from funders, collaborators, and our familial national, state and territory organisations. There were also several open mic sessions for the sharing of memories, of which there were many.

Initially formed and led by Ms Audrey Lamb (OAM), to provide community information and support for people affected by the hepatitis C virus, we have since grown to also include community appropriate efforts around hepatitis B.

While different from each other, both hep B and hep C are viruses that can cause significant liver damage if not given appropriate treatment. Regardless of the changing testing and treatment landscapes for either virus, we have always worked to educate, support, inform, and advocate – to improve health care access and outcomes for people, and reduce stigma.

Both the Australian and NSW governments have committed to the elimination of hepatitis B and hepatitis C by the end of the decade. It is estimated that approximately 79,500 people are living with hep B and over 46,000 people are living with hep C in NSW.

Our achievements over 30 years include the establishment of a wide range of highly regarded services, programs, collaborations, campaigns, and resources – most notably, our Hepatitis Infoline (1800 803 990), Prisons Infoline, and website (hep.org.au) have been the cornerstones of these efforts. Our Speaker Program – which trains people affected by viral hepatitis to talk publicly of the social, emotional, or medical-related aspects of their experience of living with hep C or hep B – has been another cornerstone of our organisation.

“We stand on the shoulders of the giants who rallied the community; gave it a voice, a face; and created this organisation,” said Hepatitis CEO, Mr Steven Drew. “Those giants are the past leaders of the viral hep community.”

“They stood tall and provided us with the means and drive to make viral hepatitis elimination a potential reality. From them, we can not only learn the lessons of the past but also look to the future and apply what worked so we can best achieve our vision of a world free of viral hepatitis. It is a vision that can become reality in less than a generation.”

Much has been achieved in our thirty years, however much remains to be done before viral hepatitis can be regarded as having been eliminated. It is an ultimately achievable goal, even recognised as possible by both Australian and New South Wales governments.

It is our sincere hope that, by our 40th anniversary, both hep B and hep C are no longer significant community health issues.

You can find out more about how to get involved and help us make a positive change for the future here.

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Media Release: Despite COVID, hepatitis can’t wait this World Hepatitis Day

Understanding hepatitis B - part 1Wednesday, 28 July marks World Hepatitis Day 2021, an important opportunity to give visibility to, and raise awareness of viral hepatitis, as well to drive better outcomes for people affected by viral hepatitis.

This year’s theme is “Hepatitis can’t wait”, conveying the urgency of efforts needed to eliminate hepatitis as a public health threat by 2030. Even in the current COVID-19 crisis, we can’t wait to act on viral hepatitis. Viral hepatitis doesn’t care about other health crises. Left unchecked both hep B and hep C will continue to find new people to infect and continue to damage the livers of those already living with the viruses.

The good news is that recent changes to Medicare means Australians can have access to management, care and treatment of hep B or treatment and cure of hep C from the comfort, privacy and safety of their own home using telehealth. Even testing for hep C can be done at home using a free Dried Blood Spot (DBS) test kit ordered from www.health.nsw.gov.au/dbstest/Pages/order.aspx

Hepatitis NSW CEO, Mr Steven Drew said, “Advances have been made in Australia and New South Wales on many fronts for both hep B and hep C. While much has been achieved through the combined and concerted efforts of community health organisations, clinicians, health departments, and researchers, we all agree that there is still much to be done to meet elimination targets in this country.”

In NSW, World Hepatitis Day falls within Hepatitis Awareness Week which runs 26-31 July. The week includes a range of local and state-wide activities, events, and initiatives to improve population outcomes for both hep B and hep C.

Mr Drew said, “A key activity this year is the roll out of HEP CURED, a campaign using simple messaging and strong imagery to promote the availability and effectiveness of cures for hepatitis C. The core message of the campaign instils a sense of connection with loved ones, or significant others.”

Three key posters were designed based on research showing the importance of “connection to others” as motivations to seek cure. The posters serve as conversation starters that lead to engagement around hepatitis C testing and treatment.

HEP CURED utilises posters in clinics and services, advertising in shopping centres and washrooms, laneway and regional billboard advertising, railway billboards, and selected bus shelters and street furniture.

Hepatitis NSW is also running a separate social media initiative featuring ten video and display adverts across Facebook, Instagram, YouTube and Google. Each advertisement – be it about hep B, hep C, or liver health – links to relevant pages on the Hepatitis NSW website, providing information and resources on testing and treatment. This initiative aims to support the ongoing push to eliminate viral hepatitis.

Included in the initiative are videos featuring some of our many amazing and inspiring lived experience speakers. These people bravely share their own very personal stories and perspectives on life with hep B or hep C, and what management or cure, respectively, means to them.
Mr Drew said, “These stories are a powerful reminder that while we focus on the disease, at the heart of all we do and what we want to achieve, are real people. People with hopes, dreams, families, friends, and a desire to get the most out of life.

“I encourage people to contact the Hepatitis NSW Infoline on 1800 803 990 for more information about the treatment options available or hepatitis generally. You can also contact us using our online chat function on our website,” said Mr Drew.

For more information, please contact:

Hepatitis NSW
Steven Drew, CEO
[email protected]
0402 518 285

Published 28 July, 2021

General information about hep B and hep C

Tens of thousands of people in NSW are living with viral hepatitis. Both hep B and hep C are viruses that can, without appropriate medical intervention, become life-long chronic conditions, eventually leading to liver cirrhosis, liver cancer and sadly, all too often, death. A significant percentage of people living with hep B or hep C are unaware they have it. Even where people know their status, many thousands experience barriers to access healthcare, treatment, or cure – this must change.

With hepatitis B, while there is currently no cure for this virus, babies born in Australia are vaccinated against it. Any adult who needs to be vaccinated can be. Testing is available, and encouraged, for anyone from an at-risk group. Should a person be found to be living with hep B, regular monitoring of their liver health is strongly recommended, and, if required, treatment can be prescribed to manage their viral load and prevent the onset of liver disease.

For hepatitis C, all Australians over the age of 12 have access to effective and affordable Direct Acting Antiviral (DAA) cures. This year marks the fifth anniversary of DAAs being made widely available in Australia through Medicare. Since 2016, more than 75,000 Australians have been cured of hepatitis C. It is no exaggeration to say that being cured of hep C can improve quality of life – many people who have finished their course of treatment report feeling greater levels of energy and alertness.

Hep C medications have a cure rate of 95 per cent. They can be prescribed by any general practitioner, or authorised nurse practitioners. Cure is usually achieved within 8 or 12 weeks, with minimal or no side-effects.

“These oral pill treatments have offered a revolutionary opportunity,” said Mr Drew. “It is important that people see their health professional to be treated and get their best life back. While hepatitis C initially has almost no symptoms, if left untreated it can ultimately result in significant liver disease.”

Testing for hep C is simple and as easy as getting your GP to do a blood test. Should someone learn they have hep C, they should seriously consider commencing treatment and get cured.

“It is not often we get the chance to eliminate a chronic disease, but we have that opportunity now with hep C,” said Mr Drew. “I encourage anyone who hasn’t yet sought out this medication to explore their treatment options,” adding that Hepatitis NSW could provide information and support to anyone living with, or affected by hepatitis including family and friends of people living with hepatitis C.

 

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Media Release: New website reaches priority hepatitis B communities

Media Release: New website reaches priority hepatitis B communitiesHepatitis NSW has launched a dedicated hepatitis B website for Chinese and Korean communities – hepB.org.au. This new site has been developed to support and inform people from these populations, in New South Wales, who are impacted by hepatitis B. The website will support efforts to eliminate hepatitis B in Australia. Current data shows targets are not being met; achievement of hepatitis B elimination targets is unlikely before 2040 which is ten years later than the agreed target.

Why hepatitis B elimination is important

Hepatitis NSW CEO, Mr Steven Drew, said “Chronic hepatitis B is the most prevalent blood‐borne virus in Australia, and is a significant contributor to liver disease, including cancer.”

Approximately one percent of the Australian population lives with the virus; people born overseas, and Aboriginal and Torres Strait Islander peoples, represent three-quarters of those affected.

Educating migrants has become a priority

An increase in migration of people from endemic populations has seen a rise in the number of individuals living with hepatitis B in Australia. This is despite infant hepatitis B vaccination programs here, and overseas, reducing overall transmission of the virus.

“As such”, said Mr Drew, “the prevalence of hepatitis B within new and existing adult migrants will remain an issue. Targeted efforts and campaigns are required for some time yet. Within New South Wales, and in pockets of Sydney specifically, Korean and Chinese communities bear the bulk of this burden.”

Even though Australia has committed to several national hepatitis B targets – 80% of people diagnosed, 20% on treatment, and a 30% reduction in deaths by 2022 – those targets are not being met. As of 2018, approximately 68% were diagnosed, with only 8.7% receiving treatment – less than one‐third of those estimated to be eligible.

“Unfortunately, deaths attributable to liver cancer have been increasing in Australia faster than deaths caused by any other cancer, with liver cancer now the sixth most common cause of cancer death,” said Mr Drew.

However, with regular testing and, where needed, effective ongoing treatment, it is possible to keep the damage done by hepatitis B at bay and safely managed.

Mr Drew said, “The difficulty is in addressing language barriers, cultural stigmas, and myths and misinformation so that people start regular testing and understand the risks of delaying medical attention.”

There is demand for Korean and Chinese language sections

“Our 2020 web-traffic statistics showed clear demand in the Korean and Chinese language sections of our primary English language site, so we expanded our existing online material to produce a dedicated in-language site.”

“With this new, special website for Korean and Chinese communities, we hope to communicate directly to people seeking advice and information for themselves or loved ones”, said Mr Drew.

hepB.org.au will enable us to provide information covering testing, transmission, prevention and vaccination, treatment, and monitoring – as well as personal stories and specialist articles – to Chinese and Korean people residing in New South Wales.

For more information, please contact:

Hepatitis NSW
Steven Drew, CEO
[email protected]
0402 518 285

Published 28 May, 2021

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What you need to know about hep B | part 4

What you need to know about hep B | part 4

This article – part 4 of 8 – was written by Dr Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

Liver cancer | part 1

One of the most serious complications of hepatitis B is the development of liver cancer. All people with chronic hepatitis B infection are potentially at risk of developing liver cancer. Even so, some are at higher risks than others. There are screening protocols for those at high risk, regardless everyone with hepatitis B should be considered for screening.

The primary cause of liver cancer is hepatitis B, not alcohol

High risk hepatitis B groups for increased risk of liver cancer are anyone with cirrhosis, a family history of liver cancer, and older people (men over 40 years and women over 50 years). However, people outside of this group can still develop liver cancers and they require close monitoring. As discussed previously, all people with hepatitis B require lifelong monitoring for both the liver condition and for consideration of liver cancer screening.

There are different types of cancers that can affect the liver. Primary liver cancers are cancers that develop in the liver cells – known as “hepatocytes”. Other types of liver cells such as bile duct cells can also lead to cancer, but this is not directly related to hepatitis B. Cancers from other sites can also spread to the liver so that liver cancers can be secondary to cancers that have started elsewhere. This article will discuss the primary type, which is refered to as liver cancer or hepatocellular cancer.

Liver cancer is one of the most common cancers in the world

Primary liver cancer is one of the most common cancers in the world – ranking fifth – and is the second leading cause of cancer related deaths in the world. It is one of the cancers that is continuing to increase in number. Apart from hepatitis B, there are other conditions that can increase the chance of developing liver cancer. This includes cirrhosis from any cause. This could include alcohol, fatty liver, hepatitis C, autoimmune liver disease, iron storage disease as well as metabolic conditions. Cirrhosis is a condition of severe liver scarring that covers a wide spectrum of symptoms, and so some patients may not realise that they have cirrhosis until they are very sick. It can sometimes be picked up early by blood tests as well as some imaging studies. Anyone with ongoing abnormal liver tests should ask their doctor about how their liver is doing.

It’s not easy to find liver cancer – multiple tests are needed

Screening for liver cancer is recommended in groups of patients at increased risk. This is done using a liver ultrasound and, in some cases, a tumour marker blood test – an alpha fetoprotein (AFP) – every six months. Since liver inflammation, cirrhosis and non-related liver diseases such as pregnancy and testicular cancer can cause an elevated AFP, there is ongoing research to try and find an accurate and simple blood test to identify liver cancer early.

Liver ultrasound is simple and safe as there is no radiation exposure. Preparation for the procedure requires fasting. As with all tests, there are limitations. It relies on the skills of the sonographer, the patient’s body build/physique and fasting state. Patients are asked to fast because the bowel can get in the way and overlying gas can limit the views of the liver. In very large patients with fatty liver, the fat in the liver can make visualization difficult so that small liver lesions may not be found. Other liver conditions such as liver cirrhosis and the presence of many cysts can also interfere with getting good visualisation.

Liver cancer is more dangerous without symptoms

In a liver ultrasound, doctors are looking to find new, very small liver spots – often less than 1 cm across. Screening with an ultrasound is usually just a lead-in to other tests that will clarify the nature of any new liver spot. Not all new lesions are cancer, but all new liver lesions in people with underlying risk factor for liver cancer need further close scrutiny.

Next: In Part 5, to be published next week, Dr Lee will write more about liver cancer.

Published 4 February, 2021

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What you need to know about hep B | part 3

What you need to know about hep B | part 3

This article – part 3 of 8 – was written by Dr Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

Hepatitis B treatment under other circumstances

There are special groups of patients for whom treatment is needed outside of the standard setting. This includes patients who need to undergo significant immune suppressive therapy; women who are pregnant and at risk of transmitting the virus to their unborn baby; and patients with co-infections such as HIV, hepatitis C or other significant chronic health conditions that place them at increased risk of complications. Family history of complications of liver disease such as liver cirrhosis and cancer are also considered as risk factors.

Our immune system causes liver scarring

The hepatitis B virus itself does not cause direct damage to the liver. Such damage is due to our immune systems response to the virus which causes the liver to become inflamed. Over time, this inflammation can lead to scarring. However, in certain clinical situations, when a person’s immune system is altered by medical treatment, hepatitis B can become “reactivated”. For instance, someone who is having cancer chemotherapy will have medicines to suppress their immune system. When the treatment is finished, their immune system becomes active again and this activity can lead to a flare of hepatitis. This is referred to as immune reactivation. Reactivation can be mild, and seen on routine bloods; but, in rare cases, this can be so severe that it can lead to liver failure. Having prophylaxis with antiviral therapy for hepatitis B can save the patient’s life.

There are non-cancer medicines that are also used to suppress the immune system for a variety of immune related disorders. These can also cause immune reactivation. Hepatitis B treatment is therefore given whilst on immunosuppressive therapy, and after stopping, for about six months. The doctor will test for hepatitis B and will advise what may be needed.

Hep B test for all pregnant women

Pregnant women are the other group of hepatitis B affected people where hep B treatment may be considered as a preventative measure. All pregnant women are screened for hepatitis B. In some cases, it may be the first time they find out they are hepatitis B positive. It is important that you receive lots of counselling about this condition and be assessed to determine whether you should have treatment or not. If you do not need treatment, a special blood test to measure the amount of virus in your blood will be done during pregnancy. This is to see whether there is an increased risk of transmitting the virus to the baby at birth.

Hep B vaccine for all newborn babies

In Australia, all babies (irrespective of their mother’s hepatitis B status) are given a hepatitis B vaccine at birth. For babies born to hep B positive mothers, an additional injection of an immune globulin is also given. Despite this, there is still a risk of the baby acquiring hepatitis B if there is a lot of the virus in the mother’s blood at birth. Hence, viral load during her pregnancy helps to determine whether additional medicines can be given to reduce this further. Tenofovir is the usual drug offered and is given around week 28 of pregnancy and stopped at some time after delivery. An obstetrician will work closely with the liver specialist in making sure the mother and her unborn baby are protected.

In addition to having treatment with regular monitoring, a mum to be needs to ensure that she takes good care of her health. General wellbeing including regular exercise, a well-balanced diet with high fibre, plenty of vegetables and protein is important. Avoiding excessive weight gain will also ensure other health benefits.

Next: In Part 4, to be published next week, Dr Lee will write about liver cancer.

Published 28 January, 2021

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What you need to know about hep B | part 2

What you need to know about hep B | part 2

This article – part 2 of 8 – was written by Dr. Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

Diagnosing And Treating Hepatitis B

Once a diagnosis of chronic hepatitis B is confirmed through blood tests, an assessment is made. The assessment will be based on health history (including family history of liver cancer), a physical examination, further blood tests, ultrasound or CT and special imaging called Fibroscan. These are needed to determine whether treatment for hepatitis B is required, or if someone only needs to be monitored for now.

A careful assessment is needed to ensure that someone will benefit from hepatitis B treatment. There are two main reasons for this. Firstly, a person can have a chronic infection without it progressing to complications such as cirrhosis or liver cancer. Secondly, hepatitis B treatment (unlike hep C treatment) is not curative and is, in most cases, long term or lifelong once commenced.

What Is Cirrhosis And Can It Be Treated?

When the liver cells are damaged they become inflamed or swollen – this is called liver fibrosis. Over time this can build up and lead to cirrhosis of the liver – which is actual scar tissue in the liver. The scar tissue reduces blood flow through the liver. The liver then can’t do its work as well as it should.

All patients with cirrhosis should have treatment. Diagnosis of cirrhosis can be simple, but in some cases may require a combination of blood test, scans and a fibroscan that measure liver scarring. A fibroscan is a special type of non-invasive scan, like an ultrasound.

In people without cirrhosis, high liver function (ALT) readings associated with high virus count are indications for hepatitis B treatment. Even where an ALT reads normal, indicating no need for treatment, it can still go up without the person being aware. Hence, the need for regular check-ups – usually every six to twelve months.

Other considerations for treatment are older age, and a family history of liver cancer.

How To Treat Hepatitis?

Treatment for hepatitis B, if required, is very simple. It is one pill per day. There are one of two medicines that are used – entecavir or tenofovir. The medication is best taken at the same time each day (entecavir away from food; tenofovir is not affected by eating). Neither drug is associated with significant side effects but, as with all medicines, side effects are possible.

Tenofovir has been associated with renal issues and a doctor will need to regularly monitor kidney function. Both medicines need to be reduced to a lower dose if the person has reduced kidney function and this needs to be discussed with the doctor.

Once treatment is underway, it is really important that the medicines are taken regularly as resistance can occur, and there is also a risk of worsening liver disease, such as a flare, after stopping the medicine. These tablets are generally prescribed by specialists, but some GPs can also prescribe these medicines.

Regular monitoring whilst on treatment, usually six-monthly, is also critical with blood tests and ultrasound. The medicine is taken to control the amount of hepatitis B virus in the blood, which then leads to decrease in liver damage.

These hep B treatments have been available for decades and have been shown to be lifesaving, preventing and, potentially, reversing liver damage.

Can Hepatitis B Be Cured?

There are currently no cures for hepatitis B.

Liver cancer risks are lowered with treatment, but there is still a need for ongoing screening as the risks are not completely averted. The goals of treatment are initially to improve the liver tests (to get an ALT normalisation) and to stop the virus from replicating . In the long term, some patients have what is referred to as a “functional cure”, where the hep B surface antigen becomes negative.

For the small percentage of people who achieve this, usually after many years of treatment, their treatment can sometimes be stopped. Even after stopping treatment, they will still require ongoing monitoring. Regardless, where cirrhosis is present, lifelong treatment is still recommended.

For those who do not have cirrhosis, it remains critical that they discuss any interruption or cessation of medicines with their doctors.

What Is The New Medicine For Hepatitis B?

Treatments that have been available in the past include medicines such as lamivudine and interferon. There are limited roles for these medicines for special circumstances. New drugs are constantly under development in order to improve outcomes.

A newer version of tenofovir is available (tenofovir alafenamide) which is associated with fewer kidney issues. It is currently not widely available and not government funded.

Other drugs are being studied as ongoing efforts are being made to find a cure for hepatitis B.

Next: In Part 3, to be published next week, Dr. Lee looks at  other issues and circumstances around treatment.

Published 19 January, 2021

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What you need to know about hep B | part 1

What you need to know about hep B - part 1

This article – part 1 of 8 – was written by Dr. Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

Referred to as the ‘silent killer, hepatitis B lives up to its name. Despite great efforts around the world to increase awareness of this virus, and to improve prevention, testing and treatment, there has sadly been no decline in global mortality rates. Nearly one million people die from hepatitis B, and its complications, every year.

What makes hepatitis B such a difficult and lethal virus?

Hepatitis B is a highly infectious virus, more so than hepatitis C and even HIV. In some parts of the world, the prevalence rates are very high – up to 20%. For Korean people, the prevalence rates have been markedly reduced by nationwide vaccination programs, but those who already have the infection remain at risk.

Even with vaccination, there are instances where, for those at high risk – such as babies born to mothers who have hepatitis B – vaccination may not be enough to prevent infection. Also, in some cases, one course of hepatitis B vaccine might not be adequate and further vaccination courses may be needed. It is safest for people to have a doctor check their blood tests – looking for protective antibody levels – to ensure that they are not in this group.

How do we test for hepatitis B?

Testing for hepatitis B is done by blood tests, but the levels of bloods tests can change over time whether you have treatment or not. Blood tests detect whether a person has:

  • the virus (hepatitis B surface antigen),
  • had the virus (hepatitis B core antibody) and/or
  • protection against infection (hepatitis B surface antibody).

Anyone living with the virus (hepatitis B surface antigen),will need to have further tests to see if they need to have treatment. The results of the tests can change over time, which can lead to misunderstanding about a person’s status.

Further testing is done through more blood tests and scans. It can be very complex and confusing to patients, but they should continue to check in with their doctors as it can save their life. Even if someone does not need treatment now, they may need to have treatment at a later date. Most people who need treatment are asymptomatic and may feel that they are alright and do not need to have checkups. This can be very dangerous because, if someone leaves it until they feel sick, then it may be too late.

How is hepatitis B monitored?

Hepatitis B can cause liver cirrhosis and liver cancer. While most people will live a normal healthy life with hepatitis B and not have any complications, identifying who is at risk, and who is not, is not so easy. Some key risks includes those who have a family history of liver cancer, other conditions that can increase risk of hepatitis B complications – such as other viruses or those who drink excessively – older patients, patients who have severe scarring of the liver(cirrhosis), have high liver enzymes (ALT) and those with high levels of virus (Hepatitis B DNA). All these factors are taken into consideration over time to decide whether treatment is required, or not, at a particular time.

Liver cancer is the most common cause of death from hepatitis B. It is also asymptomatic until very advanced and the best way to check for it is with regular ultrasounds and blood tests. If there are concerns about spots on your liver, a doctor may advise to have additional tests such as CT or MRI scans. All patients with a family history of liver cancer and all with cirrhosis should have checkups at least every six months.

Whether a person with hepatitis B is receiving treatment or not, screening can save their life. Ultrasounds are safe, there is no radiation, and they do not hurt. Anyone can have an ultrasound, as many times as needed. CT scans require radiation and hence should only be done when advised from a doctor. MRI is also available and accessible through a doctor. The benefits of an MRI is that there is no radiation, but it requires contrast (that is, requires the injection of a dye) and so is indicated for some patients only. People should ask their doctor about this if they have any concerns.

Next: In Part 2, to be published next week, Dr. Lee looks at  treatment options for Hepatitis B.

Published 12 January, 2021

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Challenges… I’ve had more than a few!

Challenges… I’ve had more than a fewJarra*, one of our Community Peer Workers, has written a guest blog post about her experience of living with and being cured of, hepatitis C.
(*Not her real name.)

During my late teens, everyone I knew was learning they were hep C positive. It felt inevitable to me that I would also get the virus and, at the age of 19, I was diagnosed with it too. At first I didn’t notice it affecting me, and I wasn’t too worried about long term effects either; those were at least twenty years away… a lifetime.
A few years later I watched my partner go through interferon treatment. This was intense and put me off the idea of hep C treatment for myself.

I didn’t want to live but I didn’t want to die either

By the time new, effective treatments were available my life was a mess. I had no permanent housing, I was in an abusive relationship, and Family Services were breathing down my neck. My daughter was removed from me and I wasn’t allowed to call or see her.

I had only just been coping at that point, and this experience sent me into a tornado of anger and hate. Using whatever drugs I could get my hands on, I spiralled down fast. I didn’t want to live but I didn’t want to die either.

I felt vulnerable and trapped

After my months-long pity-party, I decided something had to change or I would end up dead. The thought of my daughter attending my funeral was my motivation to book into rehab. There, I got a full health check and realised I had been in denial about my hep C. I needed to get treatment. It was somewhere to start on my road to health.

At this point in my life, turning up to an appointment was a challenge. But I had made a commitment to myself – if I couldn’t keep an appointment, how could I look after my daughter again? This thought got me over the line, and onto the bus and to the liver clinic on time.

Everyone at the hospital was really nice, but when the nurse took my health history she asked if I was still using and, if so, what drugs. These questions made me anxious. I was being drug tested by Family Services and going through court. Those agencies were accessing my health records and monitoring any prescriptions I placed. I felt vulnerable and trapped. I didn’t want to lie in case it was relevant to the treatment, but I wasn’t going to give out info that could be used against me. So, I lied, which made me even more anxious.

The reality of dying from this disease hit me hard

The fibroscan of my liver was simple and stress-free. But then I was told I had cirrhosis. This hit me harder than the hep C diagnosis had. Suddenly, dying from this disease seemed like a possibility.

The hospital had difficulty finding veins to take my blood, and the flow of blood from the veins they could get was small. Blood samples they collected weren’t useable. More frustration and anxiety!

The doctors and nurses were kind and respectful, but it was definitely impressed on me how much this was costing, and not to lose the prescription. It would be, I was told, a headache of paperwork and red tape to replace. This made me determined to prove that I wasn’t a stereotype, that I could be trusted to complete my treatment.

As I have PTSD, I had to work hard at remembering to take my tablets. I put a system in place to help. While I had a few side-effects, it was difficult to tell if this was due to the treatment or because of everything else I was doing and taking.

Before long, I had finished my three months of treatment and felt proud of myself. I had started and finished something which, during the chaos of my life at the time, was an achievement.

However, I never went back after 12 weeks for the final test.

I didn’t understand why my hep C didn’t clear

Some months later, I returned to rehab and was told I still had the virus. I was gutted and shocked. I didn’t understand why I hadn’t cleared the hep C. I had been so careful and yet “I had blown it”. I assumed I had been reinfected by my partner. I felt embarrassed, and I was angry with him.

A year or so passed before I shared this news with a friend who had also been through hep C treatment. Her advice and encouragement got me back to the liver clinic. Since I believed I had caught it from my partner, I took him along too.

Turns out I still had my original genotype, which was different from my partner’s. Both my self-shame and my anger towards him had been misguided. They told me the reason I hadn’t cleared was unknown.
The doctor said I could be treated again but that better blood collection was needed. Instead of the anxious painful experience from before, I was put in contact with “The Best Liver Nurse on the Planet”. She used an ultrasound machine to find decent veins and, first try, was able to get eight good vials. What a massive relief!

The fibroscan revealed that my liver cirrhosis score had improved, so the first treatment hadn’t been a waste of time. And, instead of telling lies to uncomfortable questions, I asked the reason for the question. The doctor said that knowing if I was using drugs had no relevance to treatment, it was about concern for me. I thanked her for her support, but said I wasn’t comfortable talking about anything illegal I might be doing and reassured her I’d take every precaution.

New hep C treatment turned my life around

The doctor put me on a different treatment drug. I experienced no side-effects this time and quickly started to feel better. I finished the course easy-peasy.

Issues around my housing, Family Services, and, especially, my daughter all remain in limbo. But despite all that, and the stress it brought, I was able to complete treatment… twice! Although I haven’t yet had a definite “you’re cured” test result, I’m booked in for blood tests in August which will hopefully be definitive and give me the good news.

Doing something productive for myself had a knock-on effect. It built self-esteem, which enabled me to have the bravery and self-love to start making changes in my life. Challenges remain in my life but, fingers crossed, hep C will no longer be one of them.

Learn more about hep C by getting in contact with our Hepatitis Infoline on 1800 803 990,
or download one of our free online resources.

 

For help call Lifeline 13 11 14, Beyond Blue 1300 22 4636 or Kids Helpline 1800 55 1800

 

Published 30 July, 2020

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