USER'S STORY: GO ASK ALICE
I tested positive for hep C in 1991. Then I spent over 20 years as an ostrich, living as though I didn't have it. I didn't have too many symptoms and I figured if it wasn't affecting my day-to-day health, I could just ignore it.
That was before health "professionals" compromised my confidentiality one time too many for my liking.
I live in a rural area, having moved away from Sydney a few years ago. I love it, but it can be tricky to be an active community member and keep your privacy. I learned the hard way that when you live in the country you really need to be on guard so that your private information doesn't become general gossip.
Because some health professionals were indiscreet, I lost control of who knew I was living with hep C. I worried that some people might circulate rumours about me - getting most of it wrong. I also worried that they might spread misinformation about hep C. It's hard enough for those of us who care about how hep C affects our community to get all the info straight, let alone those who don't let the truth get in the way of a good story.
I experienced two breaches of confidentiality when I was giving birth to my child in our local hospital. The first was when I overheard nurses loudly discussing "the girl with hep C" in the public corridor outside my room. The second was just after I had delivered my baby. I was enjoying the moment with a couple of family members and friends who were unaware that I was living with hep C when the doctor came in and asked "How's the hep C going?"
The next incident happened at my GP's clinic, in a crowded waiting room. The receptionist asked me in a very loud voice if the blood results I was inquiring about related to hep C.
The final straw was when I was being admitted to the local hospital for a procedure. One of the booking staff verbally attacked me for not disclosing my hep C status to them, despite it being on my hospital file and there being no legal requirement for me to disclose - they are supposed to treat everyone the same way.
I never want to have these experiences again and it made me look at hep C treatment. It was just a peek - because I found out that the tests were painful, the chances of success were low, the side effects were high and being on treatment could take the best part of a year.
Then I read in User's News (UN edition #84: Harm Reduction Heroes) that new treatments for clearing hepatitis C are now available. I was impressed when I saw how high the success rate is and that the medications are affordable through the PBS. It made me think very seriously about getting treated.
I also read some information in User's News about confidentiality and hep C and the article included details for the Hepatitis Infoline. I decided to call them to talk through my situation. As well as telling me more about my rights and how I can complain, the person I talked to encouraged me to go on treatment. She told me what I could do to start the ball rolling. I had read that I could get treatment from my GP. The Infoline staff told me that not all GPs might feel confident to treat hep C, so they sent me a very helpful info pack that I could give to my doctor.
I decided I wanted to have a go at clearing my hep C.
When I went to my GP to ask him to get me tested and treated, he didn't know about the new treatments, so the info pack came in very handy. He wasn't confident but when he read the pack through properly he could see how straight forward the whole process was. Not only could he help me, he can now help others. He arranged for the tests I needed and then I started on medication 12 weeks ago.
I took my prescription to the first pharmacy I saw after I left my GP. It was right next door to his medical centre. They were supplying to others receiving treatment, so they knew the routine. They did have to order the meds in, which took a week, but that was actually all good - it gave me some extra time to get psyched up for it all.
I only had to take one tablet a day for 12 weeks. I had no side effects whatsoever. I feel fantastic throughout the entire treatment. I'm really happy with how easy it was to start the treatment and would encourage anyone reading this to get treated.
Because guess what.... I'm cured! My PCR test done at the end of my treatment came up negative! While I still need to have confirmation in a few months, I am very pleased. Here's to good health!
Want to know more about hepatitis C and how to get started on treatment?
Need advice to complain about a health professional who has told someone you have hep C without your permission?
Want an information pack to take to your GP to let them know how to prescribe the new hep C treatments?
CALL THE HEPATITIS INFOLINE ON 1800 803 990