Australia is fortunate to have around 800 needle and syringe program (NSP) locations nationwide distributing at least 30 million pieces of sterile injecting equipment annually to the estimated 68,000 to 118,000 people who inject drugs throughout the country.
This harm reduction approach to blood-borne viruses was instigated by Australian Drug Law Reform Foundation president Dr Alex Wodak in 1986, via an act of civil disobedience, which led to NSPs being rolled out across the country.
This prevented a major outbreak of HIV among people who inject drugs, and it served to contain hepatitis C rates amongst them as well. But, while the percentage of people using drugs intravenously with hep C has dropped, in 2017, it was still around 49 percent of that population.
Other modes of transmission
There are other reasons why people are currently living with hepatitis C in Australia. Around 11 percent of cases are thought to be attributed to people who’ve moved here from other countries, where they’ve undergone unsterile medical procedures.
And around 7 percent of individuals now living with hep C, either underwent blood transfusions or were involved with blood products prior to screening in 1990 or acquired the virus through activities such as unsterile tattooing or body piercing, or the sharing of razors.
So, while prevention maybe the best cure for hepatitis C – which left untreated can lead to cirrhosis, liver cancer and liver failure – it’s not really an option for those in the community already living with it.
The virus on the inside
The rates of hepatitis C amongst inmates being held in Australian correctional centres are outrageous. While less than one percent of the overall Australian population are living with hepatitis C, more than 30 percent of adult prisoners have it.
The prisoner population has a much higher percentage of people who inject drugs than the general population. So, while Australian authorities continue to refuse to allow NSPs in prisons, these detainees are being held together within a closed environment without any clean syringes.
And the overwhelming majority of these inmates will be released back into the community, with the potential to pass hepatitis C on.
There is a hep C cure
Hep C has been transmitted in Australia since the early 1970s, but it was only identified as a distinct virus in 1989. And despite some ideas in the community around there being no cure, or no effective treatment, there’s actually a very reliable and easy cure these days.
Direct acting antivirals (DAAs) have been widely available in Australia since March 2016. And these breakthrough treatments have an excellent cure rate. Indeed, with their use the World Health Organisation estimates hepatitis C can be eliminated globally by 2030.
Sydney Criminal Lawyers spoke with Hepatitis NSW CEO Stuart Loveday about how easy and successful the new treatments are, the barriers some people have to accessing them and why there’s a need to raise awareness nationally that hep C can be cured.
Firstly, there are around 199,000 people living with hepatitis C in the community. And some may not know that new and much-lauded treatments known as direct acting antivirals are now available.
Since that time 60,000 people in this country have been cured of hepatitis C using these new treatments. Mr Loveday, why are these treatments superior to what was available prior to their arrival?
I’m pleased to say that the number that you gave – 199,000 – has actually come down. It’s now at 180,000 people across Australia. This was at the end of 2017.
The numbers have come down simply because of those new direct acting antivirals treatments: pharmaceutical treatments, which were listed on the PBS on 1 March 2016.
The big difference between these new treatments and the old interferon treatments is threefold.
The side effect profile is very different. The old interferon treatments were self-administered injections once a week. Plus, another drug taken orally – Ribavirin – plus some other orally taken drugs.
So, they were difficult to take. But, the side effect profile of the old interferon treatments was for most people terrible. And it put many people off going on treatment. Many people went on treatment and struggled to go through it. And the cure rates were pretty low.
The side effect profile was very different. Old interferon injection treatment led to shocking side effects: mood swings, feeling lethargic and terrible flu-like symptoms, which added to the symptoms of having hep C.
The new treatments are for many people side effect free, or if there are side effects, they are minimal. And certainly, by comparison it’s far less impact on people’s lives.
Secondly, the duration and method of taking the treatment is much easier. As I mentioned, the old interferon treatment was self-administered injection, plus a whole bunch of pills everyday for 3 to 6 to 12 months. So, actually, taking the drugs was arduous.
Nowadays, the treatment duration ranges from 8 weeks with one particular drug to 12 weeks for another particular drug, just a different pharmaceutical company.
That’s for most people with hepatitis C. We all know that hepatitis C causes inflammation of the liver, and if left over time, can cause serious damage to the liver. And the more serious the damage – let’s say, if people have cirrhosis resulting from hep C inflammation – then the treatment can be longer.
But, for the majority of the people, the treatment is of short duration. And it’s very easy to take. The 12 week treatment has one pill per day with minimal side effects or no side effects.
The 8 week treatment has three pills a day, with minimal or no side effects. So, the duration and ease with which those treatments are taken is the second reason why those treatments are very different from the bad old days.
Now, the third reason why the new DAA treatments are so good is simply because of the cure rate.
I remember back in the day when hep C interferon treatment started in trials in 1989, and in the early years, the cure rate was around 10 to 15 percent, with shocking side effects, such as suicide ideation and in many cases, actual suicide.
This new regime of treatment – which all Australians with hep C have equal and open access to with no restrictions on the Pharmaceutical Benefits Scheme – the cure rates now are between 95 and 100 percent.
That’s a phenomenal improvement. With the combination of the ease to take it, the short duration, minimal or no side effects, and an incredibly high cure rate, we have the capacity to eliminate hepatitis C as a public health concern by the World Health Organisation target year of 2030.
All the easy work has been done. Now the real struggle begins.
You’ve pointed out that despite all the benefits of the DAA treatments, there are a number of barriers to people seeking treatment for hepatitis C. Could you outline what these are?
First of all, we see three groups living with hep C. And this is purely for working out how and where these people are going to access treatment.
Group one is already out of the way. They’ve been and gone. They are those 60,000 people, who are already cured. And when I say cured, I mean cured. Hep C stays away forever, unless there’s a reinfection.
The first group were people who were engaged in the health system. They were ready and waiting. They had strong health-seeking behaviours. And they were ready to go when the new treatments were listed on the PBS in March 2016.
The second group of people are the group that in NSW – and elsewhere in the country – health services, policy-makers and community-based organisations are focusing a lot of their attention on trying to raise their awareness and mobilise them into treatment.
Those are people who inject drugs. We know that hep C is transmitted mostly when people share equipment – and this is any equipment: syringes and needles, tourniquets or spoons. Any of the paraphernalia used when people inject drugs.
That’s how hep C is transmitted. It is a blood-borne virus. It’s through that blood to blood contact that hep C transmits.
So, the group of people who currently inject, or might inject again, are people who might be attending the following services: needle and syringe programs, people in opioid substitution treatment health settings, people in residential rehabs, people in drug treatment services, people in homelessness settings and people in mental health settings.
Those drug, health and related services are where we need to focus a lot of attention and deliver hep C treatment through those services or through doctors or nurses associated with them.
That’s a big group of people. And that’s where their particular barriers are encountered.
The third group of people, which is probably the majority of those 180,000 people, who remain living with hep C across Australia, are people who got hep C through blood contact sharing injecting equipment years ago.
They no longer inject. They no longer attend those drug health services. They are not in prison, which is an area where hep C prevalence is really high, around 30 percent compared with around 1 percent in the broader community.
They have specific barriers as well. And that’s where GPs are the key to reaching those people with hep C, who no longer inject, or who never injected.
And by that group of people I mean, people who got hep C through blood transfusions, or people who moved to Australia from countries of high hep C prevalence, where the medical procedures weren’t sterile. We’re talking a significant number of people, probably between 80,000 and 100,000.
Now, the barriers for group two – people who currently inject – their barriers are the myths that continue to exist about how bad the old treatments were. People think the side effects are still really bad. They think the new treatments can’t be as good as they say, when they are. They’re actually better than what people say.
There are also, for that group of people, many other things going on in their lives. Simple things like relationships, accommodation, work, income, drug use: a whole plethora of normal day-to-day things that people have in their lives.
And this makes them deprioritise hep C treatment. They think they don’t need to tend to that yet. And we hear stories coming out of services of people thinking they don’t really have to worry about hep C, as they’re feeling fine.
People might be feeling fine now. But, all the while, the hep C virus is causing inflammation of the liver. And in 10, 15 or 20 years, they might not be feeling fine.
So, the message for those people – the awareness we need to raise – is take action now, treatment is really easy, and it’s fully funded by government. The only money people have to pay to access treatment is the monthly prescription charge, which they pay to their pharmacist to get treatment.
That ranges from, for people who don’t have a healthcare card, $30 to $35 a month. And for people who do have a healthcare card, it’s just above $7 a month. In the overall scheme of things, it’s a very little month. But, it still serves as a barrier.
We know that treatment is available in prison. But, the barriers there are the resources are not big enough. In prisons, there’s a lot of movement between prisons. And security often gets in the way of health appointments.
Myths, misunderstandings, other priorities in life and just “I’ll get around to it later” are some of the main barriers for that group of people who inject drugs.
For the third group, people who used to inject a long time ago, well, they share many of the same barriers. But, in addition, there will be many who remain undiagnosed. Around 20 percent of people living with hep C are undiagnosed still.
But, one of the biggest barriers of all is the level of stigma and discrimination that exists out in health settings and the broader community. And a lot of people self-stigmatise as well, if they used to inject.
The main stigma that I’m talking about is the discrimination that people endure, all too often, at the hands of some doctors and nurses. And getting in touch with their past, for many people can be something they don’t really want to think about.
So, stigma and discrimination are a major barrier. And we need to address this in Australia, because we know that drug use is illegal.
We know that injecting drugs, and using drugs not injecting, is illegal behaviour and an illegal activity. And as a result, there is this stigma that seems almost justified by the broader community and by health workers.
Until, we approach drug law reform in a sensible way – and treat drug use as a health issue, and not a criminal issue – then we are still going to see levels of stigma and discrimination.
It’s my belief, as CEO of Hepatitis NSW, that stigma and discrimination are a direct barrier from hepatitis C treatment and cure. These are barriers to health-seeking behaviours.
As you’ve mentioned, the World Health Organisation goal is to eliminate hepatitis C by 2030. In your opinion, is that possible at the current rate of people who are taking the cure?
The goal of 2030, in which we will eliminate hep C in Australia as a public health concern, is a very noble goal.
It’s held by the World Health Organisation. It’s held by the Australian government. And in fact, the NSW government – through the Ministry of Health – has selected 2028 as the year that we will eliminate.
We thought we were on track. But, there’s those barriers, and there’s also been a slowdown in treatment rates.
As estimated by the epidemiologists at the Kirby Institute at UNSW, we actually need between 1,500 and 1,800 people to be on treatment each month in Australia to achieve that goal.
We achieved that in the early days, when the new treatments were listed. There was this major rush and a great sense of optimism. Then things started to slow down.
I’m sorry to say, that the informal data coming out of Hepatitis Australia, which is our national body, shows that for each month last year treatment numbers were down to around 1,200 per month.
Come December and January, the numbers came down to 900 per month. They get that data from a number of sources, including their relationships with the pharmaceutical companies, and it’s almost real time data.
It is common practice that once the treatment numbers stay at a new rate of however many per month, it’s the December/January period that sets the scene for the new year ahead.
So, right now, we are looking at treatment numbers per month across Australia of only between 900 to 1,000 people accessing the new DAAs.
If you look at the targets of between 1,500 and 1,800 per month needed to eliminate hepatitis C, then I’m afraid, we are not looking too good right now, unless there is significant additional investment and effort provided to get people into treatment and cure.
And that needs to be done by a number of methods, which include awareness raising.
There are other strains of hepatitis, the most common being A and B. How do these different strains of hepatitis relate and differ to one another?
The three main kinds of viral hepatitis in Australia are hep A, B and C. Hepatitis A, I am very pleased to say, is not a public health concern in Australia at all. It’s pretty well managed, especially amongst men who have sex with men.
In some very isolated cases the hep A virus – which is transmitted by the fecal-oral route – has contaminated food products. It’s very rare. But, the media tend to blow it out because it’s an interesting thing.
Years ago, at Wallis Lake on the NSW Mid-North Coast, we had a batch of oysters infected with the hep A virus. And they got into one restaurant in Sydney and a number of people got very sick.
Hep A is not a public health concern. It’s sporadic outbreaks. The most recent one was around frozen berries of a particular brand. Faeces contaminated with the hep A virus got into that food product and got into small products in the community.
There’s no treatment for hep A. You just wait, rest and you don’t drink alcohol. And it is gone for most people.
There is a case of fulminant hepatitis A, which can be very serious through some combination of health factors. It impacts upon the liver very seriously and people can die from it. But, we are talking about less than one in a hundred.
Hep B is massive. Nowadays, because of the success of the DAA methods and cure, the numbers of people living with hepatitis B are far higher than hepatitis C. In Australia, we had around 230,000 people living with chronic or ongoing hepatitis B at the end of 2017.
That’s where there are very few government efforts happening to get people already living with hepatitis B into testing, into liver health management and into treatment, where it is needed.
Compared with hep C, hep A is not an issue at all. But, hep B is a big issue. And governments need to do a whole lot more, as most people with hep B are living in particular geographical areas – in Melbourne or Sydney, the big capital centres – because largely they are the people who it affects.
You’ve been with Hepatitis NSW since 1997. How would you describe the role your organisation plays in the community?
Hepatitis NSW is here for all people with viral hepatitis. We provide information, support, referral and advocacy services on behalf of people living with hepatitis C or B.
One of our biggest strengths, together with organisations like NUAA, is that we engage peer workers to help reach people living with hep C and we do outreach in communities of people living with hepatitis B.
We are a community-based organisation working on behalf of people living with hep C or hep B.
And lastly, Mr Loveday, for those in the community living with hepatitis C or B who would like to seek help how should they go about doing that?
There are two things that they can do. There is the Hepatitis Infoline here in NSW. And there’s one in each of the states and territories.
The number to call is: 1800 803 990.
That’s a free, confidential information and support line. It’s open during normal business hours.
People can phone up for information and support: not just people living with hepatitis, but their families, their friends, health workers, concerned citizens, lawyers, anybody.
Plus, there’s the Hepatitis NSW website.
Both of them are very good places to go for information and support.
Paul Gregoire is a Sydney-based journalist and writer. He has a focus on human rights issues, encroachments on civil liberties, drug law reform, gender diversity and First Nations rights. Prior to Sydney Criminal Lawyers®, he wrote for VICE and was the news editor at Sydney’s City Hub.