Hazel Heal had hepatitis C for most of her adult life. Like millions of others across the world she had been unaware of the chronic infection that was working its way through her liver. Hazel’s diagnosis should have been a turning point in her life. However, it wasn’t until over 25 years later that she was finally cured. Hers is a story of trials and tribulations but also triumph, one which shows the power of patient advocacy and offers a model of advocacy to patients worldwide.
I realised how close I had come, how urgent it was for other people to get informed. For me, it was a civic duty to make some noise and tell as many people as I could.
I had hepatitis C all my adult life. I was diagnosed in 1992 when pregnant and I was the first person in my region to do alpha interferon/ribavirin treatment; I tried again in 2003 with the pegylated interferon treatment but I was a non-responder.
In 2003, I has cirrhosis diagnosed through biopsy. I got by, but in retrospect I can see how little energy I had. In September 2015, I was decompensating, just before my first year law exams as a mature student. It was at that point when I heard about my options through a patient advocate media story – that story saved my life.
There was no funded treatment at the time in New Zealand, but I learned about a buyers club called the FixhepC system that had been set up by Australian Doctor James Freeman. Within 24 weeks I was cured. I realised how close I had come, how urgent it was for other people to get informed and how it was my civic duty to make some noise and tell as many people as I could.
Earlier this year with support from Anake Goodall (also a hepatitis C survivor) and his charity Seed the Change, I started the NGO Hep C Action Aotearoa to push for elimination in New Zealand by 2025. Despite not having funding as yet, we have achieved an awful lot in just a few months. For example, we attended the Global Hepatitis Summit and exhibited in the NOhep Village, where I gave a talk and presented a poster. I think it is important to turn the tide from stigma to having a recognisable, joyous recovery image. We are getting traction on the butterfly symbol that we are using to symbolise hepatitis C elimination
I’d love other patient advocates everywhere to use the butterfly image and it’s free for anyone to use. In New Zealand, Hep C Action ran a nationwide poster campaign to coincide with World Hepatitis Day, and our biggest city, Auckland, ran the poster on buses for the month of August.
It is essential to have advocate voices and faces in positive campaigns for testing and treatment, because that cuts through how gloomy it has been. A story will only get written or broadcast if there is a real-life patient to talk about it. Although I disliked any breach of my privacy, I gave it away and it has been well worth it. I’ve done something like 30 interviews for hepatitis C stories and they all reach people who need it. I was also speaker at the New Zealand Hepatitis C Summit as a patient advocate.
A patient speaking of surviving makes medical professionals sit up and realise they have to hurry, realise that there are always more people like me that need them to make treatment available. I aim to galvanise decision makers with my voice.
It’s all about breaking down stigma.
Thank you Hazel for your brave and inspiring work. Are you a patient or former patient inspired by Hazel? Drive action in your community by signing up as a NOhep Activist Visionary. Not sure where to start? Download the NOhep Advocacy Toolkit to help guide your actions!