Imagine being diagnosed with what you believe to be a chronic, and eventually deadly, condition, and watching that same condition take the life of your beloved husband, only to discover down the track that there is a cure.
That was the experience, both heartbreaking and full of hope, of Jo Sloan, a 59-year-old mother of two and grandmother of two from South Australia who was diagnosed with hepatitis C in 2013. Her husband Les, who she had known since the age of 13 and married at 20, had unknowingly lived with the virus for more than 30 years but had been diagnosed just two years before her.
Sadly, after having shown no symptoms for so long, Les developed a four-and-a-half-centimetre tumour on his liver, which had been weakened by hepatitis C, and he died in May 2015.
Groundbreaking cures for hepatitis C weren’t widely available at the time, but in December 2015, Jo accepted a place on a trial for a new treatment like those now available on the PBS.
“I felt guilty when I was first offered the chance, because he didn’t have the same chance, but I just had to remember that he always said I had to be there for the children and the grandchildren. Knowing him, he’d have pushed me to do it,” Jo says.
Just a few years later, following what she describes as a rollercoaster of a journey, Jo’s been given a new lease of life. She’s now free of hepatitis C and wants others to know they can save themselves from the excruciating journey she’s been on – if only they reach out and grab what’s akin to a ‘golden ticket’ opportunity.
“They should look at the end I’ve had, not at Les’s,” Jo says. “I’d love in another lifetime for him to have the same chance as me, but why risk having things end like he did – he was only 57, he was too young – when in only weeks you could be cured.”
Jo, who still works part-time, has found love again, and is marrying for the second time next month. She knows her beloved Les would have wanted her to find such happiness.
“When we knew there was no treatment, no nothing and just months left, we did a lot of crying and I’d say ‘I want to go with you’, but Les would say ‘no, you can’t, you’re still young, you’ve got the kids and grandkids, I want you to find happiness again’,” Jo reflects on her conversations with Les.
Since the life-saving medicines were added to the Pharmaceutical Benefits Scheme (PBS) in 2016, 60,000 Australians have been cured of hepatitis C. But more than 170,000 people are still living with the virus, putting them at serious risk of liver failure, liver cirrhosis, liver cancer and even death.
“If it was a cure for cancer, people would be breaking down the doors to get to it, I’m sure,” Hepatitis Australia CEO Helen Tyrrell told the ABC.
“There are three main reasons people aren’t coming forward. Some people are unaware of these amazing new cures or they may have only been aware of the old treatments that were really gruelling and not nearly as effective, so they may’ve been put off treatment.
“We also have some people who may not be prioritising treatment right now because they have no symptoms, and that’s really dangerous. Often symptoms don’t develop until serious complications have already occurred, such as liver cirrhosis and liver cancer.
Getting tested is the first step, with Hepatitis Australia launching the Test, Cure, Live campaign this month to encourage people to get tested for, and cured of, the virus.
A simple blood test can detect hepatitis C and 95 per cent of people with the condition can be cured within weeks.
The old interferon-based therapies for people with hepatitis C have been described as like chemotherapy and often made people who took them feel tired, sick and even depressed. They also had to be taken for up to 12 months and even then, didn’t cure everyone.
By contrast, the new treatments consist of a daily tablet taken for eight to 12 weeks – for people who’ve already sustained liver damage, the treatment is extended to 24 weeks – with virtually no side-effects.
The new treatments cost $39.50 per prescription, or $6.40 for people with concessions, under the PBS, compared to a cost $20,000 or more before they were funded by the government.
“The new treatments are so easy to administer – one pill a day for as little as eight or 12 weeks, so there is no need for GPs to refer most people with hepatitis C to specialists,” general practitioner Dr Anne Balcomb explains. “Hepatitis C needs to be seen as part of the core business of GPs, as much the responsibility of GPs as monitoring blood pressure or treating diabetes.”
As part of World Hepatitis Day on July 28, Hepatitis Australia has released a video explaining that not taking advantage of the new hepatitis C cure is like turning down a golden ticket, asking people who have, or think they may have been exposed to, the virus “why miss out?”.
As for Jo Sloan, she wants to ensure that everyone who suspects they may have hepatitis C is tested, and that no one with the virus misses out on the opportunity to be cured.
“It’s a scientific triumph,” she says of her ‘golden ticket’ cure. “All the people who spend hundreds and hundreds of hours on research, I’d love to shake their hands and thank them.”
If you are living with hepatitis C or would like more information, visit www.worldhepatitisday.org.au or call National Infoline on 1800 437 222.