“I am a Hep Hero because I care deeply about the 250,000 Australians living with hepatitis C of which I am one; and the need for all of us to access the new drugs through the PBS as soon as possible. I am doing all in my power to influence the government to do this, as has been done in most overseas countries. Every voice counts!”
I am 60 years old and was diagnosed when testing first became available in the very early 90’s. I have been lucky in that I have been relatively symptom free and able to work and live my life in a fairly normal way up until about 6 months ago. I started my working life as a nurse, then became a high school teacher and then ran my own business for 10 years up until a year ago.
In the past year I have worked voluntarily for Hepatitis Victoria as an advocate and campaigner and have just started working one day a week with the organisation.
Although having hepatitis C has not caused me to suffer too much physically it has still impacted hugely on my life. The fear that the virus could at any time start to destroy my liver and all that that could involve has been great, not only for me but for my family also. I have also always been very aware of the stigma and prejudice associated with having the virus.
For many years this caused me to keep my condition a secret from anyone who did not need to know. On a positive note, knowing that I had the virus caused me to adopt a very healthy lifestyle and perhaps take better care of myself than if I didn’t have the virus. I have often thought of the adage about loving your disease because it could be saving your life!
However, a regular scan 6 months ago revealed that the virus has now started to impact badly on my liver and I am now in the ‘danger zone’. I have advanced Fibrosis and my liver is starting to become cirrhotic. If I am to avoid a serious decline, I need a cure now.
This has been a long journey for me. I feel I have been well monitored for my condition but the treatment options geared towards a cure have been terribly limited. I elected not to undergo what has been the standard treatment of care – combined Interferon and Ribavirin – as the chance of a cure was too low for my genotype when weighed against the shocking reported side effects, some of which people still experience years after treatment and also the length of the treatment which would have been a year.
I participated in a drug trial 4 years ago, though seeming very promising, was not successful for me. This was terribly disappointing.
Over time I became sick of keeping my condition a secret and living with the fear that someone would find out and judge me and feel much better now that I no longer bother. The sky has not fallen in! I have been in several relationships where I had to disclose my Hep C status and although it was always very hard to ‘confess’ and I always angsted terribly over it, it mostly went better than I anticipated.
I have had a very supportive family behind me, especially my daughter, who has been my greatest support. I deeply regret all the worry and stress that my disease has caused her and hope that very soon that will be alleviated. I have accessed the drugs I need myself and am about to embark on a treatment regime that hopefully will eradicate the virus.
It is wonderful to have learned in the past year that the breakthrough in treatment we have all been waiting for has finally happened and there are now drugs that provide a very high likelihood of a cure with little or no side effects.
A simple pill a day for 12 weeks.
The bad news of course is that Australia lags the rest of the world in making them available at an affordable price. It is dreadful that people are now so desperate to get these medications that they are being forced to try and get them any way they can from overseas sources.
Shame on our government for not listing them on the PBS when people are now needlessly dying from the damage caused by this virus. How, when they now have the opportunity, could they not want to move toward eradicating this epidemic ?
Amanda’s message to others
“I believe that the reason hepatitis C has been largely ignored by the media, other agencies and influential individuals, and the epidemic allowed to explode, is because of the stigma and prejudice unjustly attributed to it. There are many ways of contracting hep C of which intravenous drug use accounts for a large percentage. How one contracted the virus should not be an issue at all however.
If people were aware of the gigantic burden viral hepatitis places on the Australian Health Care System: the cost of ongoing monitoring and regular testing, scans etc on all those diagnosed; of treating associated illnesses and conditions including transplants; lost work time; government benefit payments for those permanently unable to work, not to mention the human cost to thos living with the virus, their loved ones and doctors then I believe there would be far more interest and even outrage, and demands that the new drugs be made available now”