Hep C Action Advocates
Hazel Heal is HepC Action's lead. She lived with Hepatitis C for over 30 years. In 2015, Hazel faced a six figure medical bill to fund her urgent treatment. While considering her options she learned of the generic medication buyers’ club FixhepC, joined, received her treatment and was cured. Her experience sparked a civic duty to let others know of their legal and medical options, through media and lobbying, and ultilising her developing understanding of the legal system as a mature law student at Otago.
Hazel's role is increasingly being recognised:
New Zealand Women of Influence Finalist 2018
Membership of the South Island District Health Board steering group for Hepatitis C
Hep C Awareness and Treatment Advocate for the US-based Families for Sensible Drug Policy
Featured in the World Hepatitis Alliance’s international documentary
Presenter at the Global Hepatitis Summit in Toronto Canada in June 2018.
Presenter at the Hepatitis Summit in Auckland, July 2018.
Through her drive, skills and informed by her own experiences Hazel has reached, advised and supported many people from Aotearoa and around the world to access affordable cures and reclaim a significantly improved quality of life.
Rachel is living Hep C free having been successfully treated with Viekira Pak in 2016. In the early 2000s she was part of Professor Ed Gane’s first trials searching for a cure after discovering she had hepatitis C in 1998. She was then one of the first in NZ to be given pegylated interferon with ribavirin before it was publicly funded but found the side effects unbearable and had to stop treatment after ten weeks. Her hepatitis C could then only be monitored as there was no cure and during those long years she watched many of her close friends die from hepatitis C-induced liver failure. Finally in 2016, with a cure now available, she was lucky enough to be given a compassionate 12 week course of Viekira Pak before it was publicly funded.
Her experience living with the virus and her successful treatment has led her to become a patient advocate and lobbyist for public funding of hepatitis C treatments for all genotypes.
For the last 20 years she has been a television producer and researcher, working on documentaries, series and current affairs, and several years ago she produced a story for 60 Minutes “The Silent Epidemic”. Researching this programme made her aware of the stigma surrounding hepatitis C as it took a long time to find people who would publicly tell their stories.
She is now passionate about spreading the word that there is an 8-week cure available for all genotypes, which will shortly be publicly funded. However, to be cured, people at risk need to come forward to be tested. To this end she is working on several nationwide awareness campaigns using her media skills. Before becoming a TV producer she was a journalist, radio producer and film and TV publicist.
Much of her work is focused on Auckland and the Northland regions where she is the consumer advocate and media consultant for the Northern Region DHB Steering Group, a group working with various agencies to find and treat patients with hepatitis C. She is also media consultant for the Health Promotion Agency on their MOH hepatitis C campaign, and she was a keynote speaker at the DAPAANZ (Drug and Alcohol Practitioners Aotearoa) Cutting Edge Conference 2017.
Dr. James Freeman
James practises in Hobart, Tasmania, and is the founding owner and executive director of GP2U Telehealth. In 2014, a patient of James who had Hep C wanted to import the new cure from overseas without mortgaging his house. From this FixHepC was born. James supported his patient to legally import the medication, tested the medication, and then kept an eye on his patient’s progress and successful cure. Word got out and one patient became 100, which became 1,000.
James is a mentor, sounding board and friend to the Hep C Action team, commissioned the creation of the butterfly symbol for Hep C elimination and designed the publicity campaign poster “Old and Tired”.
James has over 20 years of clinical and information technology experience and remains a Lecturer in Medicine at the University of Tasmania. He has a B.Sc. and MBBS from UTAS and is on the Dean's Roll of Excellence for outstanding academic achievement.
Anake got a surprise wake-up call in early 2017 with a diagnosis of Hep C as a result of a routine blood test.
The range of immediate responses was a classic list of shock, disbelief, denial and lots of confusion. "It's not possible! But how, when, where did I contract it? What does this mean? What are my options? Who can I even discuss this with?"
Fortunately, he quickly found himself at the Christchurch Hepatitis C Community Clinic where he got straightforward and clear advice in a supportive environment. It took a while to get his head around the language and the options and the implications and the decisions that needed to be made. But, as is always the case, learning that you share your circumstances with a bunch of other people makes it that much easier.
The Clinic connected him to James' Tasmanian-based Fix Hep C buyers' club and by year’s end he was confirmed clear of the virus after a straightforward - and relatively side effects free - course of imported generic medication. The treatment cost ~NZ$2,000 through this route as opposed to an estimated ~NZ$100,000 for Gilead patented drugs from the U.S.
Having learned about the issues, options and challenges for Hep C patients, and keen to contribute to improved treatment opportunities for others, Anake connected with Hazel.
Patient advocacy group Hep C Action Aotearoa is the resulting vehicle for change. It is this group's shared response to an incredible opportunity to significantly improve the quality of life of some 50,000 Kiwis and millions more globally. Come join us!!
Claire first heard about the inequality in access to Hepatitis C treatments when Hazel connected with Seed the Change | He Kākano Hāpai in early 2018. Learning more about HCV, the impact it can have on people’s lives, and the inequity in access to treatment has led her to become a passionate supporter of a Hep C elimination campaign.
HCV is nearly invisible in the public eye due to lack of champions, clearly seen in the statistics, for example HCV infections outnumber HIV 2:1, yet HIV receives 100x the funding globally. Inspired by the Hep C Action Aotearoa team’s personal journeys, and willingness to confront the stigma, Claire is keen to raise awareness and normalise the virus and reduce stigma. Speaking to GPs at their annual conference she gained an insight into how much work needs to be done to design the patient journey into the elimination campaign, from publicity on the streets through to the consultations with doctors.
Hep C Action Aotearoa’s ambition is to eradicate Hep C from Aotearoa by 2025, five years ahead of the WHO target. To achieve this Claire supports the campaign with responses to PHARMAC consultations, lots of funding applications (come fund us and help us slay the dragon!), and general hustling to support the campaign and the team.