Hepatitis C is a preventable but potentially life-threatening blood-borne virus. It primarily affects the liver and, if untreated, can lead to cirrhosis (scar damage) and cancer.
When direct-acting antivirals for hepatitis C arrived in 2016, they were described as a game changer. They cured chronic hepatitis C in more than 95% of cases. So Australia adopted the World Health Organization’s target to eliminate hepatitis C by 2030.
More than a billion dollars has been invested in adding direct-acting antivirals to the Pharmaceutical Benefits Scheme, making treatment accessible to anyone covered by Medicare. By the end of 2022, about 60% of people living with hepatitis C had been treated.
That’s a remarkable public health achievement. Life-changing for many and for some, literally life-saving. But what is life like for this growing group of people after they’ve been cured? And where are we still lagging in our efforts to combat hepatitis C?
Explainer: the A, B, C, D and E of hepatitis
Cure doesn’t always eliminate stigma
The most common way of picking up hepatitis C in Australia is by sharing injecting equipment. As injecting drugs is widely disapproved of, and illegal in most parts of Australia, this has huge implications for people with hepatitis C.
The stigma associated with injecting drugs means people with hepatitis C can experience persistent discrimination – in relationships, at work, and other settings. Research suggests more than half of people with hepatitis C experienced discrimination in a 12-month period.
Such discrimination happens most commonly in health care, when doctors, nurses and others health-care professionals become aware of someone’s hepatitis C status. This can include withholding treatment, diagnostic overshadowing (when workers attribute physical symptoms of illness to mental health issues), rude or unwelcoming behaviour, and excessive infection control like double-gloving. This may lead some people to avoid seeking medical care entirely.
Our recent research found direct-acting antivirals do not necessarily cure these forms of stigma and discrimination. If medical records show a person has a history of hepatitis C, some health-care workers change the way they treat that person.
Their manner can change. The treatments they offer might change – for example, whether they will provide access to painkillers. Sometimes people are treated as if they are infectious, or as if they still have the virus when they don’t.
The law can reinforce stigma and discrimination
Laws and legal practices have been slow to respond to new treatments.
In insurance law, for instance, having once had hepatitis C has been considered a risk to insurance providers. This means affected people may not be approved for travel, health or life insurance. Or, their premiums may be much higher, potentially pricing them out of the market and limiting their ability to travel, access health care or plan for their financial futures.
We would expect to see practices change with more effective treatments. But insurance practices and the actuarial data that insurers use is lagging behind medical developments.
This is just one example of how laws and legal practices can exacerbate stigma and discrimination for people with a history of hepatitis C. Our research found this also occurs in criminal law, privacy law, social security and migration law.
People in prison are being left behind
Prisons have high rates of injecting and hepatitis C transmission has historically been high.
While Australia has had a good track record on reducing some harms associated with drug use in prisons, there is at least one glaring omission: prisons don’t have access to a needle and syringe programs to ensure that people who use drugs can access sterile equipment. This means it’s much harder to prevent the transmission of hepatitis C and other blood-borne viruses in prisons.
Sterile needles can stop the spread of disease in prisons – here’s how
Yet current national hepatitis C policy says harm reduction should be available in prisons. And the Mandela Rules – which are a set of international human rights principles – state that prisoners should receive the same standard of health care as those in the wider community.
Without sterile injecting equipment for people in prisons, people who have been cured of hepatitis C are at risk of reinfection. And Australia is less likely to eliminate hepatitis C.
Elimination demands more than just treatment
The world is watching as Australia tries to be one of the first countries in the world to eliminate hepatitis C. The final national hepatitis C health strategy is expected to be released before the end of 2023.
But the number of people coming forward for treatment has dropped significantly. Resources are being marshalled into finding people, and keeping the momentum going on elimination.
It is increasingly clear that we also need to direct resources to what happens “post-cure”, assuring people that stigma-free health care is available to them. We also need to tackle the laws, policies and practices that allow stigma and discrimination to linger in people’s lives.
Finally, we need to ensure people in prisons have access to sterile injecting equipment so they aren’t reinfected.