What is a life worth to you? How about $100,000 to improve the plight of a single person?
On March 1, 2016 the federal government added six new medicines for Hepatitis C to the Pharmaceutical Benefits Scheme and pledged more than $1 billion funding for five years.
Australia is the first country to give universal access to “revolutionary” direct-acting antiviral medicines. These new treatments have a successful cure rate of 90 to 95 per cent.
Previously, Australians with Hepatitis C could only access interferon and ribavirin.
The old treatments were extremely unpopular due to horrific side effects: nausea, diarrhoea, fatigue, depression, psychosis, and hair loss.
Now it is as easy as a pill every morning for three to six months with minimal side effects. To treat one person costs about $100,000.
Since March, 28,360 people have received treatment.
Australia is on track to cure more people of Hepatitis C, also known as HCV, in 2016 alone, than in the past two decades.
Australia has set itself on the path to eradication. But is it that simple?
Properly engaging priority populations such as injecting drug users and prison populations is essential. But it’s also complicated.
Hepatitis WA director Frank Farmer says the public response to the new treatments has exceeded expectations, but the work is far from over.
Frank Farmer and Nadia Cleber in front of Hepatitis WA’s head office. Photo: Jonathon Daly.
“It needs a lot of work, a lot of collaborations, and a lot of working closely with some populations that are difficult to reach,” he says.
Farmer says maximising this opportunity in the present will prevent “an enormous” burden on health services and the community in the future.
Hepatitis C is a blood-borne virus which affects liver cells. The immune response causes inflammation of the liver. It can lead to cirrhosis and liver cancer if left untreated.
About 230,500 Australians live with HCV, and 700 die each year. Symptoms can take years to emerge as the liver gradually deteriorates.
HCV related diseases are the leading cause of liver transplants, and death from liver cancer (mainly driven by HCV) is rising faster than any other.
In 2011, 80 per cent of newly acquired infections resulted from unsafe injecting drug use, such as sharing syringes, spoons, filters, or tourniquets.
Drug addiction can affect the wealthy and educated just as easily as the destitute. It does not discriminate, but society does.
Findings from the Report of Trends in Behaviour Supplement on Viral Hepatitis 2016 show discrimination from health workers towards injecting drug users with HCV lowers the chances of them accessing treatment.
Injecting drug users can lead somewhat chaotic lives which are often incompatible with the regimentation of a doctor’s schedule.
The WA Substance Users Association operate a peer-based Needle and Syringe Exchange Program and HCV clinic.
Peer-based means its staff have some form of drug use experience or at the very least awareness.
Inside its benign offices in Piccadilly Square sits a table full of bananas, apples, grapes and snacks.
A yellow bin, with a picture of a cartoon needle and the word “disposal” stuck to it, is in one corner, and a water cooler in the other.
The exchange is an important way to minimise harm because it offers a stable supply of sterile injecting equipment to drug users in exchange for the disposal of used equipment.
In 2013 almost 5 million needles and syringes were distributed throughout WA, 62 per cent of these were through NSEPs.
Simon McCormack has been receiving treatment for HCV at WASUA for the last three months. He is due for his last set of blood tests to determine if he has been cured.
He wears a ‘Mack’ trucker hat, and a grey jacket with the sleeves rolled up always just below the creases of his arms.
An injecting drug user, McCormack acquired HCV through sharing injecting equipment.
McCormack says many people in his life are unwilling to access treatment for HCV. “Things take a higher precedence,” he says.
“If they only knew it was that easy I think there might be a lot more signing up. At the same time I guess ignorance is bliss.”
Simon McCormack visits WASUA nurse Leanne Myers. Photo: Jonathon Daly.
McCormack says the non-judgmental nature of WASUA makes it an attractive avenue of treatment.
“There is no need to feel ashamed. I’m actually happy and proud when I walk in there,” McCormack says.
Hepatitis WA NSEP and HCV clinic co-ordinator Nadia Cleber says health care stigma is a huge barrier for priority populations.
“My clients who are currently injecting drug users or have been, have had at least one instance when they have been discriminated against because of their injecting drug status or Hep C status,” Cleber says.
“They are reluctant to access mainstream health services because of that.
“What we are offering here is fantastic, because it’s a community based treatment.”
Cleber says 28 per cent of people who access Hepatitis WA’s NSEP are indigenous.
The HCV infection rate among Aboriginal and Torres Strait Islander communities has risen by 43 per cent in the past five years.
Professor Marion Kickett at Curtin’s Centre for Aboriginal Studies. Photo: Jonathon Daly.
Curtin University Centre for Aboriginal Studies director Marion Kickett says injecting drug use in Aboriginal communities is on the rise, and the prevalence HCV is a major issue.
“From my experience within the community and different family groups, it’s because we are over represented in the prison system,” Kickett says.
“This is a constant debate with the WA Department of Corrective Services. The department talks about this as a public health issue, because they don’t believe there should be fit packs [injecting equipment] in jail.”
According to the Australian Bureau of Statistics, Aborigines and Torres Strait Islanders accounted for 27 per cent of the prison population in 2015. They represent just 2 per cent of Australia’s adult population.
Currently there are 6,057 people in WA prisons. Of these, 1,038 have HCV. Since the introduction of new medicines, 15 prisoners have completed the new treatment and 44 are currently receiving it.
University of New South Wales researcher Andrew Lloyd has conducted numerous studies on HCV within prison populations.
Lloyd says the PBS arrangement is exciting because it gives prisoners special access to treatments.
“At any one time we have 5 per cent of the infected population in prison. So you can definitely say that at least in theory we can scale up treatment in the prison dramatically and make a big impact on that elimination goal.”
According to the WA Department of Corrective Services, the rate and prevalence of hepatitis C in WA prisons is 16 per cent. This statistic is based the National Prison Entrants’ Blood-borne Virus Survey 2010.
But this fails to account for transmissions that occur within prisons through the sharing of injecting equipment. Screening for HCV is voluntary but “encouraged”.
On the department’s website, the blood-borne infection strategy states: “The prison health service is one of the biggest single notifiers of hepatitis in Western Australia. This is because of the high number of offenders who take part in injecting drug use before they are sent to prison.”
Mark McKenna is a former WA prisoner who is being treated for HCV. McKenna, 44, has been in and out of prison since he was 13.
McKenna says injecting drug use in prison is common.
“There is not a day go past where someone isn’t getting drugs” he says.
“They share every day with anyone. They just don’t care. Sometimes they don’t even rinse them out.”
McKenna thinks a Needle and Syringe Program (NSP) would help.
“They are going to use regardless,” McKenna says.
“I’ve seen some homemade horrible ones. I’ve seen someone sharp up the end of an Art-liner. He made a plunger out of a thong and a cotton ear bud.”
Lloyd says without adequate prevention strategies prisons will continue to be a major site of HCV transmission.
“In some states and territories there is no opioid substitution therapy, and in every state and territory there is no NSP in prison,” Lloyd says.
“The only notional prevention strategies are bleach or disinfectant provisions to clean injecting apparatus, and education, neither of which have got evidence to support their efficacy.”
When asked why NSPs are not provided in WA prisons, the department responded: “It’s not something being considered by the Department of Corrective Services.”
Instead the department tries to reduce the spread of HCV by educating prisoners about transmission and providing condoms and dental dams.
Farmer says to deny prisoners access to an NSP is to deny basic “human rights”.
“We think about 40 per cent of people who go into prison are living with Hep C,” Farmer says.
Farmer argues it is time to address the social stigmas and institutional inadequacies that stand in the way of priority populations.
“The rest of the world are really looking at us, the message is ‘don’t stuff it up’. We need to work together to bring down the barriers and improve people’s lives.”
