“To the uneducated masses in this town that call me a ‘disease carrying piece of crap’, refuse to serve me and vilify me ...
If it wasn’t for fools like me who have been a guinea pig for science and put my life on the line, people wouldn’t find a cure.”
Joshua Roberts is on a mission to quash the stigma surrounding hepatitis C – a virus that is slowly killing more than 200,000 Australians.
A former sufferer himself, last year Mr Roberts spoke up about his experience in an article published by the Guyra Argus.
Since then, the Guyra resident said a number of people had come forward in his community who were before suffering in silence, due to fear of being socially shunned.
“I’m now cured and I can now do everything that I wanted to do originally,” he said.
Being cured means Mr Roberts can now donate blood – a concept that brought the 59-year-old to tears.
“My long-term goal was to donate blood and I can do that now,” he said.
But it hasn’t been an easy road, having struggled with the stigma for much of his life.
Mr Roberts believes he may have contracted the virus when he got his first tattoo at age 17.
But it was nearly 10 years later that he was diagnosed after a non-related routine blood test.
“To the uneducated masses in this town that call me a ‘disease carrying piece of crap’, refuse to serve me and vilify me – if it wasn’t for fools like me who have been a guinea pig for science and put my life on the line, people wouldn’t find a cure,” he said.
“Someone’s got to do it, I’m not a hero and I don’t want a gold star on my homework book but someone’s got to try it out.
“If I’m able to help just one more person by going through my story again, they can vilify me all they like.”
Mr Roberts said now thanks to a range of new drugs, which were listed on the Pharmaceutical Benefits Scheme last year, chronic sufferers could seek a cure.
“This new treatment is as simple as going to the doctors, getting a check-up and if you’ve got it they put you on the program,” he said.
So simple and effective that doctors are predicting the eradication of hepatitis C from Australia by 2026.
The new treatment is administered as a course of pills that is consumed for three months and has a 90 per cent cure rate.
Professor Greg Dore from the Kirby Institute (within the University of New South Wales) told Fairfax Media last year that the drugs were a genuine breakthrough, comparable with the advent of antiretroviral therapy for HIV in the mid-1990s.
“This is a revolution in clinical medicine that we haven’t seen for decades, where you go from a really problematic complex therapy to a really simple, well-tolerated, highly curative therapy,” he said.
The new-generation drugs, which include Harvoni, Sovaldi and Daklinza, were listed by the Therapeutic Goods Administration in 2015 but were prohibitively expensive at $66,000 a course.
Now patients can access them for $7 to $14 a month if they have a healthcare card, or $36 to $72 for non-concession.
NSW has the largest hepatitis C population of 81,940 and more than 9 per cent of people have started the treatment.
Before commencing the breakthrough treatment last year, Mr Roberts said he tested a drug called Interferon – a medication which causes cells to heighten their anti-viral defences.
“The doctor said ‘you either live or die’ on this test,” he said.
And the side-effects were debilitating, with the drug administered by injection during 48 weeks, potential side effects include severe depression and psychosis, and the cure rate was just 75 per cent.
“The nightmares, the night sweats and the fatigue that came about,” he said.
Despite the pain, Mr Roberts said it was all worth it knowing that in a way, through participating in testing and trialing – he has helped find a cure.
“I didn’t pick up this disease because I wanted to,” he said.
“And if I touch you your arm is not going to fall off.
“The people that have put me down, if they fall victim to this illness or if their children do, and they came up to me in the street and said ‘could you help me?’ I’d do it.”
Mr Roberts said he may have also contracted the virus sometime in the 1990s when he was working at the Royal Brisbane and Women’s Hospital.
He received a needlestick injury picking up some general waste.
“Someone hadn’t put the needle in the sharps container and stuck it in the rubbish bin,” he said.
“As I tied the bag I hit the plunger, it had blood in it and it went straight into my left hand.”
He said the incident ignited a law suit that took 10 years to settle.
But either way, he said it was the long term effects of the illness, especially when it goes undiagnosed and untreated, that is what’s most damaging.
“As a result I’ve now got cirrhosis of the liver,” he said.
“The longer term effects, if you don’t get treatment and if you drink alcohol, smoke cigarettes is you will die from it – that’s the end result.”
Which is why Mr Roberts wants people to see that not only should there be no shame, but coming forward to your doctor or pharmacist if you have, or suspect you have Hep C, could save your life.
“If you have hepatitis C, go to your doctor and get on this drug and you could still have a long life,” he said.