People treated with new direct acting antivirals feel old and new hepatitis C treatments are “like chalk and cheese”
On World Hepatitis Day today (28 July), Hepatitis NSW is promoting the benefits of the new hepatitis C treatments to consumers, using the words of those who have already used them.
Since the DAAs were PBS listed on 1 March 2016, around 40,000 Australians have been treated with them for hepatitis C, according to Kirby Institute data.
While the high cost of the drugs have caused financial difficulties for some pharmacies, the new antivirals have been of huge benefit to hepatitis C patients, the new data show.
Hepatitis NSW conducted a qualitative survey of 88 people with hepatitis C treatment experience, and asked them to describe the difference between the old, interferon-based treatments and the new DAAs.
A common theme emerged.
“Chalk and cheese,” one respondent said. “Very sick on interferon, hardly anything on interferon-free.”
“Chalk & cheese,” another said. “Interferon regime was fraught with savage side-effects. Current DAAs are much more user friendly.”
A third simply repeated, “chalk and cheese”.
The new treatments have a cure rate of up to 95%.
When asked how they felt after taking DAAs, one respondent answered, “a load has been lifted from my shoulders. I no longer worry about having people find out I am hep C positive – something I have kept secret from everyone except my husband and health professionals for 30 years.
“Physically I don’t think anything has changed but emotionally and psychologically life is so much better.”
People who have taken the new drugs were also asked what advice they would give someone considering treatment.
“While there’s still a lot of scary stories out there which are based on the interferon-based treatment, the reality is vastly different,” one respondent said. “Trying treatment and adhering to it could save your life – why not take the chance on feeling better!”
Hepatitis NSW CEO Stuart Loveday welcomed the participation of the community in the survey, and especially their many positive experiences with DAAs. He encouraged people living with hepatitis C to consider treatment with DAAs.
“It is heartening to hear the stories of people who had been living with hep C for years, or even decades, and who have had the chance to be cured because of this treatment revolution,” Mr Loveday said.
“But, if we are to achieve the goal of eliminating this virus as a public health concern within the next decade – something which we think is achievable – we need more people living with hep C to see their doctors and discuss their treatment options.”
“If they are in doubt about what they should do, we encourage people living with hep C to listen to the words of their peers, who have been treated, and are now living hep free.”
Meanwhile, CEO of Hepatitis Australia Helen Tyrrell warned that access to hepatitis C cures on the PBS is only part of the solution.
“Affordable access to curative therapies is critical but the real world value of these medical miracles is entirely reliant on people being aware of them and accessing them,” she said.
“We need more GPs, in particular, talking to people about hepatitis C and feeling confident prescribing the appropriate treatment.”
She says that an early wave of “motivated and engaged people” who sought treatment had exceeded all expectations.
“But there has been a sharp decline since and the real challenge is now reaching the remaining 200,000 Australians living with hepatitis C,” Ms Tyrrell warned.
“Lack of awareness and the stigma that surrounds the virus must be addressed and we must make it easy for everyone to access treatment. This is critical if we are to achieve the goal of eliminating hepatitis C by 2030.”
She also said it was vital to ensure vaccination coverage against hepatitis B is extended, and that everyone already living with chronic hepatitis B is diagnosed and carefully monitored at least once a year.
“We must also triple the number of people accessing hepatitis B anti-viral treatments to protect them against the development of liver cancer, which is increasingly common in Australia,” Ms Tyrrell said.