Dialog Box

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Jules Cassidy

"I am a Hepatitis Hero because I want to stop discrimination against people with hepatitis. And although hero is not a word I associate my 'self' with, throughout my life I've been blessed with many heroes: doctors, nurses, family and associations such as 'Hepatitis NSW, Victoria and Australia' who made it possible to be where I am right now ” 

I have lived with hepatitis C for approximately 32 years.I became infected with hepatitis B (which  fortunately cleared) and C when I commenced using drugs intravenously - most specifically speed and heroin - in the early 1980's.

New syringes were incredibly difficult to buy in this period and it was also a legal offence to 'have syringes on your person' - thus syringes were hidden and shared over and over, for which we had to frequently sharpen them and used to wash the whole instrument in hot water (sometimes including soap), in an attempt to keep the syringe "clean". 
 
I continued to use drugs intravenously for many years, whilst also experiencing extensive periods of living without them or minimal use. I studied and became active in peer-based education and community work.

I was very proud and challenged in a positive way to become employed in places where progressive and preventative health measures, such as supply of syringes, were part of the service delivery. 

I was diagnosed with 'non A non B hepatitis' in the late 1980's (before it was renamed as hepatitis C), and although I was working 'in the industry' it was striking the minimal information that was available around hepatitis C. 

I consider myself extremely lucky as over the years I have been both included and supported in decisions regarding to my diagnosis by my family and many health workers; even though hepatitis C has notably impacted on my life, changing my energy levels and ability to work and worsening my depression and mental health - all of which made me an "inappropriate" candidate for current treatment options.

I am aware of the level of stigma and discrimination associated with hepatitis C. As little as 2 years ago I suffered enourmous (and devastating at the time) discrimination from both residential workers and clients in a woman's housing where I was residing due to being homeless and in a state of crisis as a consequence of my mental health. 

Ignorance, lack of education and lack of wanting to address the stigma and discrimination forced me to leave the service after having experienced hellish bullying, threats and intimidation from the clients as well as indiference and apathy from the staff.

Again, I was lucky and eventually had options in relation to safe housing - so many do not and so many are not free from discrimination.
 
I have enjoyed thus far a complex life and hepatitis C is part of that life. I'm extremely fortunate in the fact that my life and health have been immensely enhanced in relation to hepatitis C as I've been able to access information and support as well as 'complimentary' medicines through the P.B.S, which have been greatly beneficial.

I am honoured to have worked as a volunteer addressing my experience for Hepatitis NSW for over 10 years - and am now equally privileged to begin in a similar role at Hepatitis Victoria, helping to raise awareness around viral hepatitis. 

Jules' message to others:

"Regardless of how one transmits the virus or one's lifestyle, universal access to support, treatment, resources and referrals should be available without discrimination or harm of any sort to that person. The virus can be very debilitating and no one needs further obstacles to clutter their path and their life. Education, kindness and generosity should guide how we (as individuals and society) address these type of issues."