NOhep Villager: Seed the Change | He Kākano Hāpai

Hep C Action is a new, peer-led initiative supported by Seed the Change | He Kākano Hāpai, which aims for hepatitis C elimination in New Zealand by 2025. Our focus for 2019 is stigma, testing and treatment awareness, hepatitis C in prisons and information about generic treatment options.

What do you plan to do at your booth in the NOhep Village?

We will be highlighting the treatment situation in New Zealand, and sharing information about my advocacy journey. This will include advocacy tips and letter templates for other peer advocates. We will promote the butterfly symbol of hepatitis C recovery and hand out butterfly lapel pins, pens, test/treat posters and cups of tea. Crucially we’ll provide information on safe, personal importation of generics.

What do you hope delegates will learn from your booth?

I hope the scientific community engages with my information and research about the safety, efficacy and legality of generic medication as well as state or insurance funded options. I hope other advocates learn more about it, and I look forward to sharing experiences from people who I am there to represent and I engage with on online forums.

What will make your booth stand out?

The butterfly symbol is really eye-catching and will be printed on the stand. We will have butterfly flags and may also have some helium balloons. We will give away cups of tea, not coffee and will be trying to get noticed. The Summit is a great chance for me to get doctors and other delegates on board both with advocacy and generic options. I have the tattoo of butterfly too and expect this to be a talking point.

What are you most looking forward to about the Global Hepatitis Summit?

Meeting other patient advocates, as I have worked mostly alone or online. I am really looking forward to hearing and sharing ideas for news stories and in particular, talking to doctors about generics, research, putting a face to the buyers’ club story and answering questions about New Zealand.

How will exhibiting in the NOhep Village benefit your organisation?

We are a new organisation, gathering momentum and applying for funding. Coming to GHS will help me stay up-to-date with global hepatitis C news, which I can then take back to New Zealand and enact in my country. The event gives us credibility with funders and allows me to make the contacts I will need to push this elimination target for New Zealand.

How have you worked with the scientific community in the past?

I enjoy a great working relationship with hepatitis C science. I am in regular contact with, and supported by, leading specialists in New Zealand and beyond (Prof Ed Gane, Prof Michael Schultz, specialist Nurse Practitioner Margaret Fraser) and leading hepatitis C doctor and generics researcher, Dr James Freeman. I have recently been appointed as a patient adviser to the combined New Zealand South Island hospitals steering group for hepatitis C treatment delivery.

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