C is for Cure

Almost two decades after being diagnosed with hepatitis C, a breakthrough new treatment has given Rob Syrett back his life – and his joy of surfing

Rob Syrett

Almost two decades after being diagnosed with hepatitis C, a breakthrough new treatment has given Rob Syrett back his life – and his joy of surfing

An avid surfer, Rob Syrett knows all about the highs and lows of being out on the water: the highs of riding that barrel; the lows of taking a heavy wipeout. As a family man, Syrett also knows about the highs and lows of life: the high of the birth of his second daughter, Isabella; the low of being told, three weeks later, that he wouldn’t be alive to see her fifth birthday.

Thanks to a groundbreaking antiviral medicine, Syrett has been around to enjoy not just Isabella’s fifth birthday but also her sixth, seventh and eighth, and foresees many more happy birthdays to come both with Isabella and her 10-year-old sister, Jameella.

Syrett’s story begins in 1990, when he was diagnosed with hepatitis C, one of the most common types of viral hepatitis that causes inflammation of the liver. Left undiagnosed or untreated it can lead to cirrhosis, cancer or even complete liver failure.

But, like the almost 185,000 Australians estimated to be living with hepatitis C, Syrett had no idea he was carrying the virus until he stepped on to the mobile blood bus that visited his place of work. “A couple of weeks later, I got a very nice letter from the Red Cross saying, ‘Thank you for your donation but we can’t accept it – we strongly advise you see a liver specialist straight away’,” he says. “I was concerned but I was still fit, active and healthy so I thought it would just be something that could be fixed and everything would be all right.”

A trip to the doctor quickly burst Syrett’s bubble: he had hepatitis C. “I thought, ‘What’s hep C?,’ he recalls. “I’d never heard of it before. I started to learn more about it and that’s when I became more concerned.” Much of this concern was focused on those around him: “I thought it was very important I told my family and work colleagues about my diagnosis because the main way of contracting hepatitis C is blood to blood,” says Syrett, who believes he contracted the virus after getting a tattoo in 1987. “So I was very open with the fact I had this illness, more so to protect everybody else. My wife Maricel was my rock and she helped me get through it.”

Despite the diagnosis, Syrett remained healthy for the next six years and he was able to avoid medication, focusing rather on natural measures such as herbal tinctures to help support his liver. Then, in 2006, came more of those highs and lows, beginning with a devastating blow: his liver was starting to deteriorate. Doctors put him on an experimental treatment that reduced his viral load (how much hepatitis C virus was in his blood) from a dangerous high of 6,000,000IU/ml to zero. “We all started breaking out the champagne bottles thinking I was cured,” Syrett says. “Then a couple of months later I had another blood test and we found out the virus had mutated and come back again.”

With the experimental treatment failing, the next step was to prescribe the more traditional hepatitis C treatment, a 24-week course pairing a once-a week interferon injection with ribavirin to try to fight off the virus. “That’s when the fun began,” Synett says. “I had to inject myself in my stomach once a week. After taking the medication, I’d be curled up in the foetal position in the corner of the bedroom for days with flu-like symptoms. It was hell, absolute hell.”

Worse, those 24 weeks of hell turned out to be for nothing and, for next few years, the virus continued to ravage Syrett’s liver until, just three weeks after Isabella’s birth in 2011, doctors discovered he had Stage 2 cirrhosis. The news, Syrett says, took an emotional as well as physical toll upon him. “At that stage there was no hope in sight,” he says. “There were no new drugs coming through for testing so I lived with that thought and fear for two to three years. I tried to cram a whole life into five years with my daughters – that just played with my mind. That’s when depression – and probably a bit of PTSD – came into it. I was really short tempered and then anxiety took over. People would say things to me and I would take it as a criticism. Looking back, I’m sure it was because of everything I was going through.”

Relief for Syrett came in 2016 when he was invited to try a new treatment involving just one tablet a day for 12 weeks. Then followed the best high of all: Syrett’s blood tests came back perfect.

“It was a bit of an anticlimax in a way, like ‘What happens now? I have a life!’, Syrett says with a smile. “Then we started doing cartwheels. I’m their golden guinea pig. Now I’m surfing as much as I can and spending as much time as I can with my daughters, still trying to cram in as much as possible. I’m as happy as Larry and so is my family.”

Syrett is quick to urge Australians who suspect they may be living with hepatitis C to follow Hepatitis Australia’s three simple steps: test, cure, live. “Get that monkey off your back – go and get it sorted,” he says. “It’s just the case now of getting the test, having a pill, being cured and living your life happy and safe. It’s that easy.

“I still have blood tests every six months and my liver is back to being a normal, healthy liver. I now have a life to live with my family and a lot of waves to surf.”

Agent of destruction

The new hepatitis C treatments use direct acting antiviral agents to target specific steps in the life cycle of the virus, stopping it from replicating and infecting the liver. Available on the government’s Pharmaceutical Benefits Scheme, the treatments can be prescribed by GPs, eliminating long waits to see a liver specialist, and have a cure rate of more than 95 per cent. And, unlike previous treatments, there are little or no side effects.

“Until 2016, treatment of hepatitis C was by interferon medications which had a lot of side effects such as nausea, flu-like symptoms, diarrhoea and difficulty sleeping, which were very troublesome, and more significant side effects like serious infections, mood disorders and auto-immune diseases,” general practitioner Dr Caroline Yates says. “The new antiviral agents are extremely well tolerated with minimal (eg headache or upset tummy) or no side effects, (so) minimal monitoring during treatment is required. This means the treatment process is not disruptive and patients can carry on with life as usual. After the confirmation of clearance, if there is no pre-existing liver damage or ongoing reinfection risk, then no more follow-ups or check-ups are required for most people.”

While the new treatments mean hepatitis C could be eradicated in Australia within the next 10 years, its general lack of symptoms can make it difficult to diagnose. “Hepatitis C is generally a silent disease until the latter stages,” Dr Yates says. “Many people are unaware of their infection when they are first exposed to hepatitis C. In 2018, an estimated 199,000 individuals were estimated to be living with hepatitis C; of these, 19 per cent are estimated not to know of their diagnosis. They may have a mild flu like illness or nothing at all.”

Another challenge is the perceived stigma. “Hepatitis C is transmitted by the blood and in Australia about 80 per cent of cases are thought to be related to IV drug use,” Dr Yates says. “This may have occurred many years ago and people may not wish to bring this past history up when seeing their doctor.”

But, Syrett insists, no matter how you may have contracted hepatitis C, saving your life is more important than saving face. “There still is a bit of stigma attached but it doesn’t matter,” he says. “To people who have had a tattoo or blood transfusion in the 1970s or ’80s or have used intravenous drugs, how would you feel if you passed it on to your grandchild and you didn’t even know you had it yourself? How would you talk to your children about the fact your grandchild has hep C? If you do think you have it, you owe it to yourself and your family to get checked.

“It’s about your health and your family’s health and that’s the most important thing.”

Hepatitis Australia’s Test, Cure, Live is a nationwide campaign launched in 2018 to encourage those living with hepatitis C to speak to their doctor and find out about being free from hepatitis C. For more information, call 1800 437 222 or log on to hepatitisaustralia.com/testcurelive

Originally published as C is for Cure