NSW HEPATITIS INFOLINE

Challenges… I’ve had more than a few!

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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Media Release | Reducing the burden of hepatitis on World Hepatitis Day

Reducing the burden of hepatitis on World Hepatitis DayTens of thousands of people in NSW are living with viral hepatitis. Of greatest concern are hep B and hep C – two viruses that can 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 accessing healthcare, treatment, or cure.

What is the significance of World Hepatitis Day?

World Hepatitis Day is an important event to highlight these issues and drive better outcomes. NSW Hepatitis Awareness Week starts on Monday 27 July, with World Hepatitis Day on Tuesday 28 July. A key activity for this year is the roll out of the bright, eye-catching artwork – wall posters, street pole posters, pull up banners, and pubs and clubs washroom advertising – throughout New South Wales. The messaging focuses on the availability and effectiveness of new hep C treatments.

For hep B, while there is currently no cure, babies born in Australia are vaccinated against it; also, any adult who needs to be vaccinated can be. Hep B testing is available and encouraged for anyone from an at-risk group. Should a person be found to be living with hep B they can have regular monitoring of their liver health, and, if required, treatment to manage their viral load.

For hep C, all Australians over the age of 12 have access to effective and affordable direct acting antiviral (DAA) cures. Hep C treatment is available through local doctors. Community organisations and government agencies work to raise awareness of the cure and help people into and through treatment.

70,000 Australians have been cured of hepatitis C since 2016

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.

Since the DAAs became available in Australia in 2016, more than 70,000 Australians have been cured of hepatitis C.

Hepatitis NSW CEO, Mr Steven Drew said the medications have a cure rate of 95 per cent. “They can be prescribed by any general practitioner, as well as 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.”

We have the rare opportunity to eliminate a chronic disease

Mr Drew said testing for hepatitis C was simple and easy as getting your GP to do a blood test.

“We’ve all led varied and adventurous lives filled with new experiences. It may be that some, or one, of those experiences exposed us to the chance of hepatitis C transmission. The only way to know for sure is to see your GP to have a blood test for hep C.”

“Should you learn you do have hep C, please seriously consider commencing treatment and get cured,” said Mr Drew.

“It is not often we get the chance to eliminate a chronic disease, but we have that opportunity now with hepatitis 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.

“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 hep.org.au.”

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10 Facts about viral hepatitis for World Hepatitis Day!

10 Facts about viral hepatitis for World Hepatitis Day!

This article was written by Dr Alice Lee , Gastroenterologist and Hepatologist, Concord Repatriation General Hospital.

July 28 is World Hepatitis Day, marking a day where community organisations, clinicians, researchers, and governments raise awareness to the global burden of viral hepatitis. This year’s theme is “finding the missing millions” – in recognition of the many people around the world unaware they are living with hepatitis B and/or hepatitis C.

Did you know the date of World Hepatitis Day is also the birthday of Nobel prize winner Dr Baruch Blumberg? He not only discovered the hepatitis B virus, but also developed a diagnostic test and vaccine for the virus.

Here are ten more facts about hepatitis…

1. There are 5 viruses that predominantly affect the liver…hepatitis A, B, C, D, and E

They are all different viruses and are transmitted through different pathways. Hepatitis A and E are mostly spread through faecal-oral route and are preventable by hand hygiene and careful food preparation. Hepatitis A is more common in Korean communities and is also vaccine preventable. Hepatitis B is spread through blood and body fluids, hepatitis C through blood to blood contact. Hepatitis D only occurs in people infected with hepatitis B and is uncommon in Korean patients.

2. There are over 300 million people in the world that live with viral hepatitis

Less than 20% of the people with the virus are aware that they have the infection. The prevalence rates of hepatitis vary throughout the world, some areas have high rates of hepatitis B of over 10%. Higher rates of hepatitis B are seen in older Koreans born before vaccination programs were available.

3. More than 1.5 million people die each year from viral hepatitis

Many people are unaware of their diagnosis until the very late stages of disease and are often too late to be saved. Causes of death include acute liver failure, but the most common cause of death is liver cancer. Described as a ‘silent killer’, those unaware of their status may only have symptoms when the disease is very advanced and when options of treatment are very limited. It’s important to know your status!

4. Prevention of hepatitis remains central in eliminating viral hepatitis

Vaccines are available for both hepatitis B and for hepatitis A. Hepatitis B vaccine is now a part of Australia’s childhood vaccination schedule, starting at birth. It is safe for people of any age to have, even when pregnant. All people should be vaccinated. Know your status and get vaccinated if you are not protected. Those who are family members or partners of positive patients can access free vaccines through NSW health. Ask your doctor.

5. Hepatitis B and hepatitis C are transmitted through blood

Avoid sharing IV needles/syringes, razor blades and toothbrushes. It is safe to share meals, hug your family and friends. Stigma and discrimination is not acceptable. Talk to your health care provider if you have any concerns.

6. Hepatitis B, C, and D can lead to chronic liver disease, cirrhosis, and liver cancer

Many people can continue to have a healthy and normal life without realising their liver is being damaged. It is essential that, if you are at risk, you see your doctor regularly and get checkups. Taking care of yourself is also very important, in addition to getting vaccinated, avoid excess alcohol and do not smoke, take care not to take medications that can cause liver injury. Focus on a healthy diet, exercise and stay lean.

7. Hepatitis B can be treated

Treatment, for those who require it, is available in the form of an oral tablet. If you are living with hepatitis B, your doctor will assess whether you need treatment based on blood tests, your history and other test results. Even if you do not need treatment, you may need treatment later. Lifelong checkups are needed.

8. Hepatitis C can be cured

People with hepatitis C virus – confirmed with a PCR test – are eligible for treatment in Australia. Tablets are taken for 8 or 12 weeks and the treatment cures more than 95% of cases. Ask your doctor about this!!

9. Beware immune suppression

If you have a medical condition that requires immune suppression, you may be at risk of hepatitis B reactivation (meaning an increase in virus activity in the liver). Know your status and ask your doctor.

10. People with viral hepatitis can be at increased risk of liver cancer

Screening can lead to early detection and curative treatment. Liver cancer is the most common cause of death in patients with hepatitis B. It is asymptomatic and the only way to diagnose it early is by screening. If you have hepatitis B, you may need screening. This is simple, using an ultrasound on a six-monthly basis. It could save your life. High risk groups include older people, those with advanced disease (liver cirrhosis) and a family history of liver cancer. Treatment is available.

Celebrate World Hepatitis Day by spreading awareness about viral hepatitis

You or someone close to you, loved ones can be impacted by hepatitis. Celebrate World Hepatitis Day as a hepatitis community to increase awareness, talk about hepatitis and address the ongoing challenges of increasing prevention, diagnosis and treatment.

You, or someone you know could be one of the “missing millions” … you can play a part in “finding” them. You could save a life – yours, or someone you love.

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The path to hep C cure was difficult, but I made it

The Path To Hep C Cure Was Difficult But I Made ItPaul, one of our Community Peer Workers, has written a guest blog post about his experience of living with and being cured of, hepatitis C.

My experience with hep C started in the years when everything was still done the “old way”. Ultimately, I survived hep C because of the new direct-acting antivirals, but it was a long time coming and I had become very sick before I got the chance to be cured.

I wasn’t aware of the profound impact hep C would have on my life

In the late 1980s, although I was still using at the time, I was dining with a group of recovering injecting drug users. Someone told me that I would “eventually die from hep C”. I hadn’t even been diagnosed at that stage, so this was news to me!

Then, going to rehab in 1994, I was indeed diagnosed with hep C. I had probably contracted it in the late 1970s, when the virus was all but unheard of.

I had no idea just how profound an effect hep C would have on my life. Initially, for many years, I lived normally. But the liver is a fundamental organ – it performs hundreds of functions; it determines our energy and our spirit – and hepatitis C attacks the liver. Over the following decades, I ticked every box of things that could go wrong with my liver.

My energy started to fade. I had ascites. Due to hepatic hypertension and massive blood loss, I went into a coma. And the tests! I will always remember the day I had my liver biopsy.

Hep C lead me to a dark and lonely place

My cognitive ability was leaving me, and I was no longer able to work. All of this put a huge tension on my relationship, which eventually ended. I hadn’t wanted my partner to watch me die.

As my liver became sicker, I was placed on the list for a transplant. Even so, I began to have suicidal ideation, believing that I was going to die anyway. That was a terribly dark and lonely place to be in. I was fearful that if I told my medical team about these thoughts, they would take me off the transplant list.

One of the evaluations in the lead up to my transplant was for mental health, and I was told I should have a “positive attitude”. Thankfully, I decided to talk about what was going on for me. I was referred to a hospital psychologist who specialised in the experiences of folk waiting for a transplant.

As it turned out, my dire thoughts were not unique!

At one stage, the medical team offered me interferon treatment. Had I still been using drugs I doubt that I would have been given treatment, and I knew folk who had been refused for that reason.

Unfortunately, during interferon treatment, my blood platelets plummeted to a critical low level and I was taken off it. Although this was discouraging, the new anti-viral cocktails were on the horizon and my team recommended me for the trial. The word on them was much more positive than interferon – a high success rate with few side effects, how good is that? Incredibly, the drug company refused, saying that I was too big of a risk. That was a huge blow.

The new treatments turned my life and health around and I am now well

Eventually, the new treatments became available in Australia through the PBS on March 1, 2016. I was put on the treatment and – so much for being “a risk” – I was cured of the virus a month before my scheduled transplant. A huge blessing.

Despite being cured of hep C, by this time my liver had gone to stage 4 cirrhosis and I was growing small cancers. While I was now at the top of the list for transplant, the journey to transplant required me to be healthy enough to survive what is dramatic surgery. Being cured of hep C helped me with this.

Although it was a massive challenge, I made it through my liver transplant, and I turned my life and health around. My energy was better after clearing hep C. It might have been an awful experience but, three years later, I am now well.

Throughout all of this, I have been totally open about my condition, prepared to take on any stigma and believing that others might benefit from my openness.

To anyone who may have shared needles, or maybe had a blood transfusion before the virus was identified, I say – go get tested. If you need to be treated and cured it’s an easy process these days, no painful biopsy involved!

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.

Published 13 July, 2020

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