Hep C Action

By Hazel Heal | Posted: Monday February 25, 2019

Hazel Heal shares her vision for eliminating Hep C in New Zealand by 2025.

I was diagnosed Hep C positive in 1992, nearly as soon as the test became available. My experience of the disease embodies the story of the virus itself, which I expect now to see eliminated from the world in my lifetime. I had interferon + ribavirin treatment, (both sorts) with three young children. I was diagnosed with cirrhosis by biopsy in 2003, aged 39.

Then came DAA’s. In 2015, with scan showing a kPa of 40, climbing LFT’s, I was told I needed treatment ‘yesterday’. There was nothing funded here then, and even selling my house would not have been enough for my treatment. I imported generics, after checking it out carefully, and was cured. My most recent scan showed no cirrhosis, and a normal liver.

With the increase in energy resulting from my cure, I have completed a law degree, and started an NGO aimed at eliminating hep C in New Zealand by 2025.

http://www.hepc-action.nz/

Our team, Hep C Action, is over the moon that treatment for all genotypes will be available from 1 February. Simplifying access means we can now concentrate on awareness, reducing stigma, and encouraging testing.

I want to thank our outstanding New Zealand researchers; Professors Gane, and Stedman for their pioneering work. I want to thank Professor Schultz for backing me when I needed supervision, coming as a very early adopter of an unusual medication source. I want to thank Pharmac for listening to submitters like me, and experts, in negotiating a price we can afford, to treat everyone.

I would like to thank the New Zealand Hepatitis Foundation, and I would also like to thank the NZ Society of Gastroenterology Specialists. You may not be aware of what a big role your organisation has played in my global advocacy. Your patient focussed, pragmatic inclusion of the generic option of FixhepC for genotypes 2-6, when we only had funded medication for genotype 1, has had far reaching effect in encouraging doctors, and health system planners, to follow the science and help their patients get treatment. It has often been urgent, as in my case. Many lives have been saved as a result.

Now we are in the era of elimination; such exciting times as we have the first opportunity in around 60 years to see the end of a world top 5 infectious killer. Hep C Action will be playing our part, promoting the butterfly as the international symbol of hep C, to erode stigma.

Hazel Heal