Every Christmas John* would get really unwell for no apparent reason. He was not a big drinker. Like many people, he drank more alcohol over the holiday period but not so much that it would explain why he felt so ill.
One year he had enough of sick summers and went to his doctor. The blood test showed that John had Hepatitis C (Hep C), a disease of the liver that is exacerbated by alcohol.
Hepatitis C is a serious disease that is estimated to affect 700 people in Tairāwhiti. It can seriously damage the liver and often leads to liver cancer. Traditionally it has been difficult to treat effectively.
However, that has recently changed. New and easy treatment is now available that can potentially change the lives of people with HepC.
The problem is most people who have Hep C don’t know they have it. Most of these people are over 45 years old and contracted Hep C in their youth. They may have got a dodgy tattoo or piercing, had a blood transfusion before 1992 (before blood products were tested for HepC) or used intravenous drugs. They have been feeling old and tired for years and don’t realise their liver is shutting down.
The association with drugs means that there can be a stigma attached to the disease which keeps it underground and discourages people who think they may be at risk from getting tested.
I found the worst thing about having Hep C was the social stigma, says John. “It’s just not the sort of thing you are likely to broadcast.”
John was happy to share his story to encourage other people to get tested and treated but was not keen to share his identity.
John thinks he picked up the disease in the 1970’s. “I was about 14 or 15 when I went off and got a tattoo in town on my shoulder. The last thing on my mind was whether they were using clean needles or that there may be a chance I would pick up a disease.”
“It was another 18 years until I got the diagnosis. During that time I always felt down on power and a bit lethargic. Once I was diagnosed I was told to stay away from alcohol. As long as I did this, life was good. I think it was just a matter of getting your head around the fact that you had HepC and there was quite a bit you could do for yourself - plenty of exercise, tidy up the diet a bit etc. All these things seemed to help.”
“I was extremely lucky to be under the care of Dr Duffy at Gisborne Hospital. He and his wonderful Nurse Chrissy Parker were very helpful and reassuring when I was feeling a bit down. However, I was reluctant to try the previous treatment "Interferon”. I heard it was invasive and some friends had had some pretty severe reactions to that treatment.”
“When the Viekira Pak RBV treatment came out in 2016, I was more than keen to jump on board. All I had to do was take pills for 12 weeks and now I am completely cured. The only side effect for me was difficulty sleeping which made me moody. Not everyone is affected this way.”
“It is hard to believe after 40 years that I don’t have HepC anymore. That is a great relief. There is no longer an increased risk of liver damage and I feel much better in myself.”
“After years off the alcohol, I have no great burning ambition to start drinking again. Apart from the odd glass, I still refrain.”
“I really encourage anyone who thinks there is a chance they could have HepC to get tested. You don’t have to tell anyone just go and get tested.”
Viekira Pak RBV treatment has a 95 percent success rate of curing the particular type of Hep C it is designed for (genotype 1), says Dr Chris Duffy. “New treatments are imminent which will cure all people with Hep C. However, since the treatment became available only 15 people in this district have been treated.”
There are about another 700 people for whom treatment will make a significant difference in their lives and keep them from potentially life-ending liver damage, says Hauora Tairāwhiti Chief Executive Jim Green. A team of people are working on encouraging people to get tested. We need everyone’s help to spread the word.”
“With new treatments and the support of people with HepC and their families our goal is to say goodbye to HepC once and for all from Tairāwhiti.”
See your GP, Nurse or Health Professional about getting tested, and get on with your life.
*John is not his real name
Could you have HepC?
- Have you ever had a tattoo or piercing?
- Have you ever injected drugs? (even if only once)
- Have you had a blood transfusion before 1992?
- Do you live with someone who has HepC?
If the test indicates HepC you will have a full blood test. This will be followed up with a special scan.