Home › Forums › Main Forum › FixHepC Admin › World Hepatitis Day 2019
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28 July 2019 at 9:17 am #29337
Hi, I’d like to share some of the media and stuff we have been doing for World Hepatitis Day, today, July 28.
First, this great clip from our local celebrity, raising awareness and thanking Dr James
https://www.facebook.com/TheChillsFilm/videos/vb.1956115914667842/2447775108608910/?type=2&theaterThen we had some media articles https://www.odt.co.nz/news/dunedin/treatment-fully-provided-and-no-longer-lingering?fbclid=IwAR3_dHWDgmk4RzU6ZuqHmr68Kj9dIMhOVsjNSzV380WQVUWmubBAvIu0VpY
And I got an amazing donation of digital billboards all over the country for the weekendAnd best of all, we had Dr James here in person, giving a talk at a conference, meeting our Minister of Health, and making the 6 pm news!
Attachments:
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
28 July 2019 at 5:18 pm #29340Thanks for this Hazel, very impressive anti-Hep C activism going on in New Zealand, seems like the country is going to reach its goal of eradicating Hep C in the next few years. Dr James and you are definitely doing your parts
Making the world a better place – one patient at a time.
29 July 2019 at 3:37 pm #29343I like this one with the ripples
YMMV
30 July 2019 at 8:06 am #29350Thanks Hazel. Great coverage and CONGRATULATIONS on being awarded a 2019 Sir Edmund Hillary fellowship for your advocacy for Hep C elimination and social justice!!!! That’s a great acknowledgement of your hard work and more publicity for the cause. Well done Hazel. xx
30 July 2019 at 9:45 am #29351Congratulations Hazel, that is awesome
Making the world a better place – one patient at a time.
30 July 2019 at 10:35 am #29354Thanks Coral and Mar
I love these night time ones- I defy anyone to drive past these and not notice them
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
19 August 2019 at 2:00 pm #29380Here is an article from NZ Doctor Magazine from that trip, it is paywalled so just pasting in, no link
Aussie doc urges GPs to join a once-in- a-generation hep C treatment drive
ctaylor@nzdoctor.co.nz
Friday 9 August 2019, 01:49 PMAustralian GP James Freeman says finding hep C patients to treat is getting more difficult and the help of GPs is urgently needed
The man behind Australia’s hepatitis C “buyers’ club” is urging New Zealand GPs to get involved in treating the disease, which he describes as one of the most rewarding experiences in medicine.
But GP James Freeman is also warning health decision-makers in this country not to follow the lead of the Australian Government by setting time limits on funding hep C drugs.
Speaking to a small audience at the RNZCGP conference in Dunedin at the end of last month, Dr Freeman described his personal experience of getting involved in hep C treatment.
His talk came just three days before the Ministry of Health and Pharmac announced that more than 2000 New Zealanders with hepatitis C have been treated with direct-acting antiviral Maviret since it was funded in February.
Australia spends $1 billion on hep C treatment
The Australian Government has committed $ 1 billion dollars over five years to tackle hep C. An estimated 230,000 Australians are living with the disease.
However, when asked by an audience member what Australia can teach this country about how to deal with the disease, Dr Freeman says, “What Australia can teach you is how not to do it.”
Finding and treating the first 25 per cent of patients is easy, he says – and after that it gets increasingly difficult. “It’s just going to get harder and harder. In Australia in the first year, we treated 40,000, in the next we treated 20,000, next year it’s going to be less than that. We’re going to have to work to find these patients.”
He says a relatively tiny amount of money was spent on awareness, and if New Zealand does the same “you’re shooting yourself in the foot”.
He says the health minister who championed the hep C funding in Australia was replaced by a new minister who gave it a lower priority. “I don’t think he understands that we run out of funded treatment in a year and a half.”
Pharmac says the current funding for Maviret in New Zealand isn’t for a fixed period. But Dr Freeman says it is still vital for GPs to find patients to treat.
“Everything needs to be done to wheedle patients out of the woodwork. People with hep C are going to die.”
Unorthodox methods to access drugs
Dr Freeman says hepatitis has a long history. It was known as far back as the days of the Roman legions, but it was during World War II when “hot blood” transfusions from person to person were common, that it spread around the world.
He met his own hep C “patient zero” in 2014 and he began to research what treatment was available. Drugs had been produced but they were very expensive. “They were the same price as diamonds, gram for gram. It really was your money or your life.”
After meeting a South African doctor who recounted how people had started importing generic antiretrovirals to treat AIDS in that country, and also inspired by the film Dallas Buyers Club, Dr Freeman decided to do the same for hep C, setting up the FixHepC Buyers Club to access generic drugs from China and India, which he tested on himself before treating his first patient.
As word got around more patients started knocking on his door. He “accidentally” treated the retired editor of the Sydney Morning Herald, and it ended up on the front page.
Within three months the Australian Government announced a funding deal for the drug Epclusa.
‘Once in a generation’ opportunity
Dr Freeman describes it as a once-in-a-generation opportunity for doctors. “It’s our first-ever cure for a virus. I think that’s fantastic.”
Some New Zealand GPs have been reluctant to get involved with hepatitis treatment, fearing it will entail a lot of extra unpaid work, but the pan-genotypic Maviret is regarded by the Hepatitis Foundation as relatively simple to prescribe.
Dr Freeman would like to see more incentives for GPs to treat hep C patients so it’s not something else they are being asked to do without recompense. “The Government needs to be realistic.”
However, he says being able to cure patients of a debilitating and fatal disease is incredibly rewarding and the gratitude shown by patients is unlike anything he has experienced.
“They’ve been crook for so long – it’s like being reborn. There’s a brilliant opportunity to get involved in this.”
Genotype 3 30 years, 2x treatment interferon/ribavirin non responder. Cirrhosis 17 years. Fibroscan, decompensating, 40 down to 22 by 29/3/16- now down to 6.5, normal, no cirrhosis. Started Buyers Club Sof/Dac 14 Nov 15. SVR 12 29/0716
19 August 2019 at 5:06 pm #29383 -
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