NSW HEPATITIS INFOLINE

Feeling better is the new normal after hep C treatment

Feeling better is the new normal after hep C treatment

Feeling better is the new normal after hep C treatmentGren, one of our Community Peer Speakers, has written a guest blog post about his experience of living with and being cured of, hepatitis C.

CW: refers to historical cases of stigma and discrimination

I was diagnosed with hep C in 1990. A routine blood test found that I had an abnormal liver function and another test found I had been exposed to hep C. Back then they couldn’t test to see if I still had live virus in my blood, so it was assumed that I had an active case of hep C. After the doctor gave me the results, he just said, “you have hepatitis C, you should see a specialist” – and that was the extent of his counselling.

The reality of being diagnosed with hep C

Following the diagnosis, I went home a bit shocked and sad, however my partner and family were nothing but supportive, which helped me enormously.

It was early days for hep C treatments, and I opted to do an experimental treatment that took six difficult months and ultimately didn’t work for me (or hardly anyone else, for that matter).

With that ordeal behind me, since I still had hep C, there was nothing much I could do about it so I carried on with my normal life and tried to live as healthily as I could. I ate my veggies, got exercise and didn’t drink much alcohol. I stayed in touch with the various doctors and got very familiar with the good people at Westmead Hospital and Hepatitis NSW, who all helped me with information and news about hep C.

In the past, I’ve described myself as a ‘promiscuous discloser’, although that’s not entirely accurate. I immediately disclosed my hep C status to all my close friends and relatives, but after that I only disclosed to people, I was getting medical support from and others I trusted, and even then, only if I thought it was appropriate.

I’ve been able to disclose to every employer

In a number of ways, it has been easier for me than others living with hep C – I know I’m not a “stigma magnet”. I’m Anglo, straight, older (now), middle class and highly educated. I’ve been able to disclose to every employer I’ve worked with since 1990, and to everyone that’s involved in my life. I haven’t had to hide who I am. I have been fortunate.

While I haven’t been a major victim of stigma or discrimination, I once sat opposite a General Practitioner who said they, “hated ‘junkies’…” and that, “they were a waste of space”. So apparently, if they’d seen me when I was 20 they might have thought I was “a waste of space” too. Needless to say, I never went back to that doctor.

It was a drag knowing that I had the virus inside me, knowing that even though the risk was low that I could unintentionally infect my wife and family. Also knowing that my liver was slowly being damaged and that I couldn’t get rid of the virus, weighed on my mind.

I’ve done treatment three times. In 1991, I took part in the aforementioned phase 3 clinical trial for six months. It was pretty bad, but I was still able to work. In 2006, I did Pegylated Interferon Combo therapy with Ribavirin. It was horrible. 48 weeks of feeling like I had the flu, and the treatment didn’t get rid of the virus either. Finally, in 2016, I tried one of the new direct acting anti-viral therapies (Viekira Pak, which has since been discontinued because there are now even more effective treatments available). For me, it was 12 weeks of very mild side-effects.

I was still able to carry on my life as normal while on treatment for hep C

As everyone says, the new treatments are easy to do and very effective. The one I took has been discontinued, but the replacement treatments have even fewer side effects and treat all genotypes. Despite the few side-effects I did experience, I was still able to carry on my life as normal while on treatment. By the end of it I already knew I was cured.

Going to see the doctor three months after finishing treatment – to find out for sure that it worked – was one of the best days of my life. I had been trying to get rid of the virus for the last 25 years and when he told me I was cured I realised I had finally done it. I laughed and cried when the doc told me and, even though neither of us were the hugging type, we both shared a little hug. I was in such a happy daze that I started to leave without paying. The doc did remind me though, and I asked how much he wanted. He could have asked for, and got, nearly anything from me, but he only asked for my Medicare card. Wow.
Even today I sleep better, I feel better. A few years after being cured, feeling better is the new normal.

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 30 June, 2020

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Hepatitis NSW believes Black Lives Matter

Hepatitis NSW supports and stands with the Black Lives Matter movement

Black Lives Matter

It is an absolute tragedy that it takes yet another death of a black person at the hands of law enforcement for the world to engage in a discussion about racism. It is a damning indictment on all our societies that it requires deaths to be filmed and shared on media platforms for us to be moved to action.

Any rational, objective and humanist analysis would say that discrimination of any sort is flawed – it creates unnecessary division; perpetuates oppression and disadvantage; diminishes society and culture; and imposes huge imposts economically at the individual and societal level.

The racism that exists in Australia

In an Australian context, it is essential that we don’t just observe and focus on the American experience highlighted by the Black Lives Matter movement. We must recognise, acknowledge and accept the institutional racism that exists in our own backyard. To this end, it is devastating that a recent Essential Poll shows that almost 80% of Australians believe Americans are correct to demand better treatment for African Americans in their society – but only 30% believe there is institutional racism in Australian police forces.

There have been at least 437 deaths recorded since the Royal Commission into Aboriginal Deaths in Custody ended in 1991. A 2019 report also indicates that Aboriginal and Torres Strait Islander people are now more likely to be in prison than African Americans. The research shows that over the past three decades, the share of Indigenous adults in prison has more than doubled, from 1,124 per 100,000 adults in 1990 to 2,481 per 100,000 adults in 2018.

Aboriginal and Torres Strait Islander peoples are incredibly resilient, having lived on, thrived and cared for this country for over 60,000 years. Because of the ongoing impacts of colonisation and institutional racism, we now see that Aboriginal and Torres Strait Islander people have poorer health outcomes and lower life expectancy than non-Indigenous Australians.

Aboriginal and Torres Strait Islander people and hepatitis B and hepatitis C

In relation to our own area of health focus, Aboriginal and Torres Strait Islander peoples are disproportionately affected by both hepatitis B and hepatitis C, with considerable variation by geographic region.

Aboriginal and Torres Strait Islander peoples make up 3% of the Australian population. In 2018, Aboriginal and Torres Strait Islanders were estimated to make up 6.3% (around 14,277 individuals) of the 226,612 Australians living with chronic hepatitis B. We are committed to working towards rectifying this stark inequity.

People affected by the criminal justice system and viral hepatitis include people who are in custody as well as their children, partners, friends, family, and a networked life outside of prison. The prevalence of hepatitis C is estimated at 30% among the 14,000 people in NSW prisons and at 60% among those who inject. Being in prison is a risk factor for hepatitis C exposure.

There is no current estimate of Indigenous hepatitis C population prevalence, although 2007 modelling estimated there were between 13,000 and 22,000 Aboriginal and Torres Strait Islander peoples living with hepatitis C. Each year, it is estimated Aboriginal and Torres Strait Islander peoples constitute at least 11% of newly reported cases of hepatitis C. Infections in people aged under 25 years were six times higher among Aboriginal and Torres Strait Islander peoples than for non-Indigenous people (12.2 per 100,000).

As a nation, we must do more

If we are to move forward as a nation we must recognise the roles we each play and the systems we uphold that make this the reality of life in Australia for Aboriginal and Torres Strait islander people. First Nations people. This is not acceptable. We can do more. We must do more.

We will not be complacent. We will not be complicit.

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Hep C: The virus, and the fear, are gone

The virus, and the fear, are gone

Image: Eyüp Belen | Pexels | bit.ly/3e9xIy6

Susan, one of our Community Peer Workers, has written a guest blog post about her experience of living with and being cured of, hepatitis C.

Living with hep C had given me a growing sense of dread; the fear of developing cirrhosis or liver cancer intruded more and more into my thoughts. Fortunately, just as things looked like they might be taking a turn for the worse, hope appeared in the form of an effective new treatment. This is my story.

How I was diagnosed with hep C

I had been a healthy teenager and young adult, full of energy. During the 1990s, my energy started to wane. I was in my thirties so, at first, I thought I was just getting older. But it got worse. The doctor was puzzled, said I might have “chronic fatigue” and sent me for a raft of tests. This is what led to my hep C diagnosis.

I adjusted to living with hep C, but my liver started to get worse

My life began to revolve around having hep C, the consciousness of it ever present in my mind. I adjusted to living with hep C by moving to a low-fat diet, with no alcohol and lots of rest. Overall, at the time, I was doing well. My liver function test (LFT) results showed only a slight elevation in level for a number of years. I clung to the hope that I would be one of the few people who lived with hep C and wouldn’t develop a serious illness.

Interferon was the only option for treatment in those days, and I decided against taking that. I was working and also caring for my young son. Other than the tiredness, I didn’t feel sick and I couldn’t afford to be laid low with the side-effects that were common with interferon. Plus, as I told myself, the interferon “probably wouldn’t work” as it hadn’t for many people.

At some point though, my liver test results started to get worse. My LFTs were climbing and the nausea every morning was increasing. I started reading more about hep C and began to worry about developing a serious illness. That dread became an ever-present fear that dominated my life.

How treatment turned my life around

Then, a few years ago, I read an article about new, easy to take hep C treatments that had a high cure rate. I talked to my doctor, who was encouraging and prescribed Epclusa. The pre-treatment screening tests however, had made me anxious. I worried they’d find I had cirrhosis or cancer. Fortunately, the fibroscan results showed I had nothing as bad as that, although I did have fatty liver disease.

I started the Epclusa treatment, still full of trepidation about side effects. My regular morning nausea waned after only six weeks of treatment, and I began to have more energy. After all that worry, there were no side-effects at all during the 12 short weeks of treatment.

The day the doctor told me my post-treatment result – “no virus detected” – was one of the best days of my life. Then the follow up result. Again, “no virus detected”. I started to live life differently. My everyday activities didn’t change but my energy levels did and so did my attitude. I no longer thought of myself as a person who might start to die soon. I made long-term financial plans. I stopped living one day at a time.

Curing my hep C was one of the best decisions I have ever made

Getting treatment for, and curing, my hep C was one of the best decisions I have ever made. Living with hep C, for me, had been a life full of fear and isolation. Living without hep C has given me a new life with hope for the future.

Life is better, now the fear is gone.

Published 23 June, 2020

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