Hepatitis C New Zealand

August 22, 2010

Hepatitis C Fear and Loathing, Biopsy vs. Fibro scan in NZ

Fear and Loathing, Biopsy vs. Fibro scan in NZ

Ultrasound replaces painful liver biopsy surgery for hepatitis C patents in Auckland and Waikato

Painful biopsies have been replaced by an ultrasound technique the Fibroscan (a $200,000 machine) which provides a painless, non-invasive alternative to a needle biopsy by measuring the liver with ultrasound waves and evaluating progression of the disease.

“Obtaining liver tissue by a needle biopsy can be a very painful procedure resulting in bleeding, perforation of other organs, even hospital admission and, rarely, death,” Dr Weilert said.

“This has previously been the only option to assess the liver but the Fibroscan allows us to measure liver stiffness without invasive action.

“It will also allow us to map progress of liver disease better.”

The Fibroscan works through a probe held against the patients’ abdomen.

“The Fibroscan generates a pulse which sends waves through the liver, measuring its stiffness. The degree of stiffness in the liver indicates the amount of disease in the liver – so the greater the stiffness, the more disease there is”, adds Professor Gane.

“Because the Fibroscan procedure is so quick and easy we are able to see more patients in a shorter amount of time and patients no longer need to wait for months to start their antiviral therapy

The procedure takes about 15 minutes. There are currently machines in Auckland and Waikato

See below for Deliverable Three Undertake an analysis and develop a report on the utilisation of fibro scanning in New Zealand:

http://www.waikatodhb.govt.nz/news/pageid/2145843080

http://www.stuff.co.nz/waikato-times/news/1402330

Associate Professor Ed Gane Champion for HCV for the Ministry of Health.

Associate Professor Gane this year was appointed as Champion for HCV for the Ministry of Health.

In September 2005 a commitment was made by the government, to resolve the longstanding concerns of those infected with hepatitis C through the blood supply. Within this commitment a variety of measures were promised, including provision of an enhanced treatment package. Additional funding was sought and secured for this treatment package and a Hepatitis C Treatment Advisory group, comprising of clinicians, DHB managers and community representatives and chaired by Ed Gane was established to advise the Ministry of Health.

The terms of reference of the Hepatitis C Treatment Advisory Group were to develop a costed and prioritised Implementation Plan, supported by district health boards (DHBs) and the Ministry of Health. This group first met on 17 April 2007. During 2008, they conducted a comprehensive Stocktake of current HCV treatment services provided at each of the 21 DHBs. Following analysis of these results and other information, the committee identified barriers to accessing this treatment and geographical gaps in service provision. They identified priority interventions to improve services and patient outcomes throughout NZ and developed a costed and prioritised implementation plan for improving the access to and uptake of Hepatitis C treatment in New Zealand. The subsequent Health Report and the Hepatitis C Plan was submitted to Hon. Tony Ryall by HCTAG in January 2009.

On 28 July 2009, the Minister approved the “Strategic Directions for Hepatitis C – improving access to and uptake of hepatitis C treatment services” and signed off the funding allocation to address the key action areas within the document. These four key action areas, identified within Strategic Directions for Hepatitis C, are: (i) improving HCV treatment services;(ii) improving knowledge of HCV among primary health care providers; (iii) increasing the percentage of all people with HCV who have had the disease diagnosed; (iv) improving the knowledge of HCV prevalence in the New Zealand population and within subgroups.

Plans for primary care, including the new e-learning tool for GPs and Practice Nurses, designed to improve knowledge and encourage opportunistic screening for HCV.

Four Million Dollars Missing from New Zealand Hepatitis C Program

“A major component of the $30 million package announced in December last year is an additional $5 million per year to be invested to improve access to, and uptake of, hepatitis C treatment services. An advisory group has been established to assist the Ministry of Health and District Health boards improve hepatitis C treatment services to all people with hepatitis C, who are entitled to publicly funded health services.”
The ministry have now budgeted one million dollars for these service improvements wonder where the other four million promised went ?

So thirty million to pay for the New Zealand Ministry of health’s professionally incompetent advice and poor performance in protecting the blood supply.

Just one million of a promised five million to improve the situation and actually treat people

Four million dollars just disappearing I get the feeling this is another colossal ministry cost cutting mistake in the making how expensive is this poor health policy going to be in the long term ? time will tell.

Note : To get our (www.hcv.org.nz) copy of the Strategic Directions document we had to write many  Official Information act requests. The Ministry of Health who subsequently lied about our requests to the ombudsman (and were stupid enough to get caught lying) had withheld it for over a year. Now where do you think the Ministry tell people to go to get a copy of the “Strategic Directions for Hepatitis C – improving access to and uptake of hepatitis C treatment services”  Well here to  peer based organisation that has no funding www.hcv.org.nz we are hosting Strategic Directions for Hepatitis C document and the only place it’s available, their key document for a million dollar tender W.T.F.

What the ministry want to buy for one million dollars to improve access to and uptake of hepatitis C treatment services

The Ministry is seeking a Provider to deliver the following services for individuals with Hepatitis C:

• appropriate referral from primary care to secondary care via use of a standardised tool;
• provision of integrated care for those diagnosed but untreated or discharged following treatment via use of a shared care clinical tool / protocol;
• equitable access to fibro scanning for diagnosis;
• improved information resources for specific ‘at risk’ population groups; and
• improved detection, access and treatment service delivery models.

The following services are being purchased:

Deliverable One
Develop, consult and disseminate nationally into primary care a standardised referral tool / form from primary to specialist care.
Deliverable Two
Develop, consult and disseminate nationally across providers, a shared care clinical tool / protocol, for the provision of integrated care / management for:
Deliverable Three
Undertake an analysis and develop a report on the utilisation of fibro scanning in New Zealand including:
Deliverable Four
Develop, consult and disseminate nationally education / information resources for specific sub-population ‘risk’ groups including:

Development of a plan for targeted testing will enable implementation of more effective detection and treatment of at risk groups.
Deliverable Five
Research and provide a feasibility report for a potential three-year programme to promote
the targeted testing of specific ‘at risk’ groups to improve early HCV diagnosis rates and
treatment options for these individuals.
Deliverable Six
Undertake research and development of innovative HCV service delivery model(s) for New Zealand:

(If you want a copy of full tender document you have to go to NZ government GETS site and register )

So if you want a slice of the pie get your applications in It looks like a bunch of stakeholders have tried to carve up the funding pie in to neat little segments only time will tell how effective this will be.

Epidemiological ongoing measurement of the spread of Hepatitis C actually gets a special mention in Strategic directions document but seems to have been completely ignored in the proposal for services. I just wonder where the evidence base for this spending is coming from if we don’t accurately count the epidemic on a ongoing basis?

I would like to have seen money spent on measuring the epidemic more accurately, although as there seems to be an emphasis on meshing the diagnosis / treatment and care of hepatitis C in to a new national GP information system, may be this will also count the spread of the epidemic ?

Looks like we are going to get more community clinics (Deliverable Six) because we need to duplicate treatment services, New Zealand being awash in spare health funding we can afford this ? Most of the country has no access to support services. Wellington Waikato and Invercargill no resources no support services with rural NZ getting the big nothing.This inequality of access to support needs to be addressed on a national basis rather a than a few regions.

We are farming the newly infected from ineffective  needle exchange programs that grow the epidemic , on to community clinics at needle exchanges delivering treatment, a win win situation for needle exchanges as far as capturing  health resources.

This development of a duplicate service to serve the needs of IDU (intravenous drug users) would be better addressed by educating health professionals on how to best to care for and not stigmatize IDU using existing resources  rather than developing a expensive  duplication of resources.

Well the next six months should reveal the shape of hepatitis C improvements so I guess that is progress and I should be a bit more positive about it. Fingers crossed something good happens.

Stop people dying needlessly

My favourite way of testing and diagnosing the majority of individuals who are no longer if ever active drug users would be the English system of pharmacy testing which has proved much more successful that GP based testing.
Last year a viral hepatitis testing pilot project in 19 pharmacies across the country has found a hepatitis B or C positive patient in every 6 tests conducted. Across the pharmacies a total of 234 tests were conducted, diagnosing 35 people with hepatitis C (15% of tests) and 4 people with hepatitis B (2% of tests). This is a far higher proportion of hepatitis C positive diagnoses than found in GP surgeries, where 4% of tests find positive hepatitis C patients and 2% of tests find hepatitis B patients.

Charles Gore, Chief Executive of The Hepatitis C Trust said: “It is a tragedy that increasing numbers of people with hepatitis B and C are dying, often from particularly unpleasant liver cancer which these viruses can cause. It is a tragedy because they have generally been living with the virus for years and could have been given treatment at any point, if only they had been diagnosed. So we desperately need new approaches to testing that will find the undiagnosed patients and this pilot study shows pharmacy testing could be just what is needed.”

“If the pharmacy testing pilot is taken as a model and rolled out by PCTs and pharmacies nationally, we can stop people dying needlessly.”

The Isle of Wight continues to offer these tests after the end of the pilot scheme and has extended it to include added HIV and syphilis tests from the same sample as the viral hepatitis screen. When asked, Gary Warner from Regent Pharmacy on the Island said:

“The results speak for themselves – pharmacies see a different cohort of people to those who see their GP and therefore we can access and diagnose people who otherwise would not have been tested. As an example, the patient that was screened as HIV positive was not someone who would have accessed the test in any other way.”

http://www.medicalnewstoday.com/articles/198364.php

press video here

http://www.youtube.com/watch?v=iG49NTOvOEU

best of health

www.hcv.org.nz

July 23, 2010

100% Pure New Zealand Hepatitis C

100% Pure New Zealand Hepatitis C

Who do I have to tell if I have Hepatitis C In New Zealand?

Hepatitis C and Disclosure

Someone asked about Hepatitis C and disclosure

With some help from the Hepatitis C resources Centre Dunedin and the New Zealand

Ministry of Health the definitive reply seems to be.

DISCLOSURE
A person with hepatitis C is not legally required to disclose his/her positive

status unless he/she is,
*A member of, or applying to join, the New Zealand defense force.
*A healthcare worker undertaking exposure-prone procedures.
*Donating blood.

Page 19 of the little yellow book of Hep C Facts,:

If you would like a copy of   the little yellow book of Hep C Facts ring

Hepatitis C Helpline New Zealand 0800 224372 (0800 22 HEPC) or email  the Otago

Hepatitis C Resource Centre hepcotago @xtra.co.nz

Hep C Concert Christchurch

Thank you to Roger Grauwmeijer Rokpx.com Roger@RokPx.com for the images from the day May 22 concert in thepark

chch11

chch82

Dunedin opened it’s new Hepatitis C resource centre

photos were taken speeches were made.

hepcopen2

An article about the opening and the centre’s worker Heath Te Au appeared in the

Otago Daily Times,

” Fresh chance inspires hepatitis C educator

Having a ruptured appendix in the 1990s may have helped save Heath Te Au’s life.

Blood tests taken at the time of this medical emergency showed that he had hepatitis C, most likely the result of sharing needles and drug equipment during a time when he was an intravenous drug user.

After his appendix removal a doctor asked him to think about what he was doing to himself.

Mr Te Au (40) said it was a wake-up call, something which led him to change his life.

He underwent treatment in 1999 and 2000 and is now clear of the blood-borne virus which had been caught early enough not to cause major liver damage.

Now, he uses his experience to help educate others in his role as manager and one of two educators at Otago’s Hepatitis C Resource Centre. ”

Where are the Hepatitis C Resources for Wellington ?

A very large proportion of the population have no access to hepatitis C resources

its’ dysfunctional and emphasis the New Zealand’s Ministry of Health’s complete

failure to address the needs of those affected and infected by the Hepatitis C

epidemic.

The New Zealand Ministry of health attempts to contact the victims of Croydon Day Clinic

Hep C tracking hampered by privacy issues

Health authorities have tested more than half the women in New Zealand potentially exposed to the hepatitis C virus in a Melbourne abortion clinic, but are being hampered by confidentiality rules which mean they cannot leave phone messages.

Fifty-six New Zealand women have called the Ministry of Health’s Healthline, concerned they had contracted the virus after James Latham Paters, an anaesthetist at Melbourne’s Croydon Day Surgery Clinic was now being investigated by police and medical authorities. More than 20 of his patients tested positive to a strain of hepatitis C identical to his own.

“The Australian Victorian health authorities have contacted 33 New Zealanders and the bulk of those have been tested,” said the ministry’s director of public health, Fran McGrath.

The New Zealand test result figures would be released as part of the Australian report once the contacting and testing process was completed. The ministry expected to have a further update in September.

Dr McGrath said contacting the women was a slow process because confidentiality requirements meant callers could not leave messages and had to repeatedly ring back.

“Even contacting one individual can take several calls followed by a registered letter, all of which can take a considerable period of time.”

http://www.stuff.co.nz/national/health/3918567/Hep-C-tracking-hampered-by-privacy-issues

Hepatitis C Resource Centre Otago Stakeholders Meeting June 16

Hep C Seminar Dunedin

Insights offered on hepatitis C, services

“Recent concern about the risk of hepatitis C to women who may have been treated at a private medical clinic in Melbourne highlights the need for increased awareness about the illness, clinical nurse specialist Margaret Fraser says.

Ms Fraser, who is the chairwoman of the reference group for Otago’s Hepatitis C Resource Centre, said there was still widespread ignorance about the condition.

http://www.odt.co.nz/news/dunedin/110725/insights-offered-hepatitis-c-services

After sorting out my family commitments I arrived late at 9.20 so missed the

Opening / powhiri ,  Heath Te Au , Hepatitis C Resource Centre Otago who works as

a phlebotomist and the needle exchange and Margaret Fraser the hepatitis c nurse

from Dunedin Hospital speaking about  Epidemiology and treatment of Hepatitis C

apologies that I missed them speaking.

Dr Janet Downs from the free doctor’s clinic at DIVO the Dunedin needle exchange

talked about  Hepatitis C in the community. She spoke eloquently about her work

at the needle exchange, if you live in Dunedin / Otago and want to see her at the

needle exchange free clinic for IDU Intravenous Drug Users ring the needle

exchange and make an appointment

Dr Michael Schultz, Hepatitis C and what happens if you decide against treatment

was the next speaker.

Key points  “everybody should be treated the earlier the better”

The younger you are when you begin treatment the better chance of a successful

outcome

There were some unique and disturbing aspects to the policy ?  of the Southern

District Heath Board

1, people are not able to get a second course of treatment if the first course

fails to successfully clear the hepatitis c virus.   One strike and you’re out

this just seems to be harsh when retreatment is an option in other DHB’s.

2, You have to have a biopsy in the Southern region ( Dr Schultz couldn’t

understand why anyone would complain about a biopsy as they obviously didn’t have

a problem with needles?)

A professional contact sent us this, “I contacted leading  NZ specialist expert

to clarify who needs a biopsy and who doesn’t.   Here is the response: “We have

never needed a biopsy for Gt 1 or HIV infected or haemophilia.  Only change is

for Gt 2 and 3 where now Peg/RBV is available to all rather than just those with

severe fibrosis.”
In the past only G2/G3 who has severe fibrosis could access funding, therefore

for this to be determined, a liver biopsy was needed.  The new funding for

treatment now includes all G2/G3 hep C patients; hence a liver biopsy may not be

necessary.
Interesting sounds like you may not have to have a biopsy in other DHB’s.

If a liver biopsy is a barrier to accessing treatment for some people (I think it

is) we would be better to remove it in some cases ?

Merrilee Williams RN, Otago hepatitis C nurse spoke about treating Hepatitis C

next she was knowledgeable and gave a informative presentation.

Michelle MacDonald, Psychiatric Liaison spoke on treating people with Hepatitis

C
and the neuro psychiatric effects of treatment

Depression
Fatigue
Irritability
Insomnia and sleep disturbances

She explained that preexisting mental health issues can and need to be treated

before treatment

Once these conditions are being treated they do not preclude someone from

successfully undertaking treatment.

Bill Jang, Christchurch Hepatitis C Resource Centre Te Waipounamu arrived by

helicopter (well maybe not, but he made a very brief appearance and then left) ,

he made the interesting point that the recent international 1 in 12 hepatitis

campaign was  actually one in forty New Zealanders have hepatitis B or C.

He has begun educating rest homes on Hepatitis C care.

Shame the needle exchange DIVO wasn’t there to advocate for their clients but

again they to seem to be uninterested in their client’s access to care or issues

surrounding Hepatitis C. Not surprising when the local needle exchange is now

entirely governed  and run from Christchurch as a skeleton service.

Wonder how that works with the Ottawa charter on public health. Best just ignore

best practice for public health and instead have our poorly performing health

services controlled from Christchurch.

The good news is there has been an increase in the number of people being treated

in Otago from 24 to 40. I imagine this is the people with genotype three who are

finally getting treatment after Pharmac changed the funding for treatment for

their genotype finally making it accessible.

If we do the calculation that 1% of Otago population has hep c a figure of 1800

people and the Otago/ Southern ? District Heath board treat 40 per year, we can

calculate that in just 45 years everyone would be diagnosed and treated.

Maybe Bill Jang is right about rest homes, assuming the undiagnosed infected live

that long.

It was a good opportunity to see Hepatitis C discussed in the community in such a

positive way a great morning well done to the organisers.

Their were lots of info  / pamphlets available and I picked up a glossy A4 brochure from Roche aimed at raising awareness amongst NZ General Practice Doctors which has to be a good thing.

You and Pegasys Together we can cure hepatitis C Identify and refer patients today.

gptogethercover

Roche pamphlet targeting GP’s.

With 75 % of hepatitis C patients undiagnosed it seems a timely resource

Each New Zealand GP practice on average would have 15 patients.  Most undiagnosed

and untreated.

txtrochegp

North Island Hepatitis C Resource Centre (Te Ika a Maui)

I just found this website for the North Island Hepatitis c Resouce Centre I’m

guessing it’s the replacement for the old site that seems to have disappeared the

Hepatitis C Resource Centre (Te Ika a Maui)   http://www.hepcresources.org.nz/

put on your sunglasses it’s bright with all those virus floating round.

pegypen

Best of Health

www.hcv.org.nz

June 2, 2010

New Zealand Hepatitis C Croydon Day Surgery

NZ Ministry of Health Press Release

2 June 2010

55 Women at Risk of Hep C being Traced

New Zealand and Australian health authorities are tracing 55 New Zealand women who visited a private medical clinic in Australia between 1 January 2006 and 7 December 2009 who may be at risk of having contracted Hepatitis C.

Ministry of Health Deputy Director of Public Health Dr Fran McGrath says Australian authorities identified the link between a cluster of hepatitis C cases and a private medical centre in the State of Victoria, Australia in April and are now investigating how this happened.

There is a police investigation in Victoria and media reports of legal action in Australia being planned.

“The Department of Health in Victoria, has taken responsibility for tracing, directly contacting and confidentially informing all 3,500 women concerned, including the 55 affected women giving a New Zealand address.”

The Department began contacting the New Zealanders yesterday as they worked through the 3500 women being traced. Around 1000 Australian women have been contacted and 746 tested.

Of those tested 44 have been found to have hepatitis C, around half of whom have had their infection linked to the private medical centre.

Because of the difficulties involved in tracing the women, the Ministry of Health will be working more closely with its Victorian counterpart in helping trace the New Zealand women concerned.

New Zealand women who had procedures at the Croydon Day Surgery in Croydon, Victoria from 1 January 2006 to 7 December 2009 can call Healthline in New Zealand and be transferred free of charge to a confidential Australian hepatitis line for further information.

“This is a sensitive and potentially distressing situation and the Ministry of Health here and health authorities in Australia are being careful to protect the privacy and confidentiality of the women involved”, Dr McGrath says.

Specialist staff in District Health Boards in New Zealand are on standby to offer blood testing, follow-up, support and treatment if necessary.

“Based on the results of women tested to date approximately 5% of women treated at the clinic may have contracted Hepatitis C. Based on this information we estimate that up to 3 New Zealand women may test positive.”

Any woman who has received treatment in a Melbourne private clinic in the four years from 2006 to 2009 should contact (New Zealand ) Healthline 0800 611 116 for advice.

Hepatitis C is a blood-borne virus that causes inflammation of the liver and which can have serious complications.

For more information contact Peter Abernethy, Media Relations Manager, 021 366 111

Further information can be found at the Victoria Department of Health website http://www.health.vic.gov.au/chiefhealthofficer/alerts/

Press release ends

Hepatitis C cases linked to doctor grows


AAP

The number of women infected with Hepatitis C after being treated by a Melbourne doctor has grown to 44 and is rising.

Another 32 women have tested positive to the infection after being treated by James Latham Peters, an anaesthetist at a Croydon abortion clinic, the Department of Human Services (DHS) revealed on Monday.

That number is certain to grow and the DHS has urged any women who have had abortions and been treated by Dr Peters at the Croydon Day Surgery to contact them.

The number of women infected with Hepatitis C after being treated by a Melbourne doctor has grown to 44 and is rising.

Another 32 women have tested positive to the infection after being treated by James Latham Peters, an anaesthetist at a Croydon abortion clinic, the Department of Human Services (DHS) revealed on Monday.

That number is certain to grow and the DHS has urged any women who have had abortions and been treated by Dr Peters at the Croydon Day Surgery to contact them.

More than 1100 women treated by Dr Peters since 2008 have been contacted by DHS and told to be tested, with the results of 746 women received showing 32 infection cases, Victoria’s chief health officer Dr John Carnie said.

Dr Carnie and police believe the doctor recklessly and maybe deliberately infected the women by using needles he had contaminated.

“The more cases you find in this instance, it becomes more and more difficult to explain this by any other accidental means,” Dr Carnie told reporters on Monday.

http://news.smh.com.au/breaking-news-national/hepatitis-c-cases-linked-to-doctor-grows-20100531-wpuu.html

best of health

www.hcv.org.nz

May 11, 2010

New Zealand World Hepatitis Day, May 19 2010

New Zealand World Hepatitis Day, May 19 2010  update

A couple of events for world Hepatitis month here in New Zealand

Hepatitis Free concert in Latimer Square Christchurch May 22 nd 11 am – 4 pm

The Hepatitis C Resource Centre Te Waipounamu in conjunction with World Hepatitis Day  proudly present a free concert in Latimer Square Christchurch Saturday May 22 nd 11 am – 4 pm info stalls, Sausage Sizzle,bouncy castle, byo picnic

Lots of Bands Squirm , Dialtones , Mynor Starr ,Anthesiac, Magic Eye, Anthesiac,Papanui High School Jazz combo, ChisnallwoodIntermediate Bands Vivid Distortion, Chain Reaction, Closing Time, 1.5l sprite bottle, DJ Detox Damage.

hepc-gigposter2010
further details contact Hepatitis C Resource Centre Christchurch phone 3663608  email hcv @xtra.co.nz

Opening of the new Hepatitis C Resource Otago Centre office May 19 2010

A great day out in Christchurch and if you make it to the event watch out for  Hepatitis C Resource Centre Dunedin phlebotimist Heath in his band,  Heath will be back in Dunedin on 19 May for the opening of the new Hepatitis C Resource Centre office in Dunedin.

further details contact Heath and  Allison at Otago  Hepatitis C Resource Centre hepcotago @xtra.co.nz

The past month has seen a lead up campaign of  one in twelve hepatitis  awareness ads played nationally on TV 3

best of health

www.hcv.org.nz

May 7, 2010

New Zealand Hepatitis C Blog May 2010

New Zealand Hepatitis C Blog May 2010

World Hepatitis Day, May 19, aims to raise global awareness of hepatitis B and hepatitis C and encourage prevention, diagnosis and treatment.
World Hepatitis Day is led by the World Hepatitis Alliance, which represents 200 patients groups and organizations
http://www.worldhepatitisday.org/en/Home.aspx

The Hepatitis Comics

Have a laugh with Lucinda K. Porter ‘s blog The Hepatitis Comics. Lucinda is hepatitis C positive and positively believes in the power of humour.

http://hepatitiscomics.blogspot.com/

Medical transmission of Hepatitis C from Australia

VICTORIANS worried about their contact with Dr James Latham Peters over the past four years should contact health authorities – not just patients of the doctor in 2008 and 2009, as first stated last week.

A spokesman for the Department of Health last night confirmed that Dr Peters had worked at Croydon Day Surgery – the clinic where he allegedly infected 12 patients with his own strain of hepatitis C – since 2006.

On Friday, Victoria’s chief health officer, Dr John Carnie, said the infected patients had visited the clinic between June 2008 and December last year, and that patients worried about their contact with him at the Croydon clinic during this period should contact the department.

He said departmental workers were also trying to contact patients they believed to be at risk of contracting the blood-borne virus from him during this 18-month period.

But the department spokesman last night said authorities would also encourage patients who visited Dr Peters at Croydon Day Surgery as far back as 2006 to seek further information from the department if they were worried about the virus.

As of last night, the department had received 830 calls from people with questions about the anaesthetist, who is believed to have been using drugs when he infected patients with his particular strain of the illness.

Last week, Dr Carnie said he referred the matter to police in March because he found it hard to imagine how the transmission of the virus had been accidental.

http://www.theage.com.au/victoria/officials-welcome-hepatitis-c-feedback-20100412-s4dx.html

Being Warehoused

‘Warehoused : when patients elect to wait for the new drugs’
Warehoused : Thought this was interesting about waiting for new treatments, I think you might have to wait extra long for pharmac to fund a new treatment in New Zealand. So maybe prepare to be in your warehouse with hep c for a long time ?

Hepatitis C Patients May Boost Merck, J&J, Vertex

http://www.businessweek.com

By Michelle Fay Cortez and Naomi Kresge

April 19 (Bloomberg) — At Fred Poordad’s bustling hepatitis C clinic in the heart of Los Angeles, one in every five patients receives no treatment. They are waiting for a wave of new drugs, expected in the next 18 months, that may boost their chance at a cure by as much as 10-fold.

They’re just the first among new therapies anticipated in the next five years as companies seek a single pill to cure the infection. Poordad, chief of hepatology at the Liver Disease and Transplant Center at Cedars-Sinai Medical Center in Los Angeles, doesn’t object when his patients elect to wait for the new drugs, a practice known as “warehousing.”

“The warehousing has been going on for the past year or so,” Poordad said. “I think we’ll see a tremendous increase in the volume of patients that are treated. That’s the most exciting thing in the field for a long time.”

The drugs closest to market, Merck’s boceprevir and telaprevir from Vertex and Johnson & Johnson, are protease inhibitors crafted from the technologies that led to discoveries made in the fight against HIV. The new treatments are being tested as additions to current standard treatments. Both drugs work by blocking the action of the protease enzyme the hepatitis virus needs to replicate, directly stopping it from spreading.

Warehoused better than a wallet biopsy………….

Telaprevir, has had a trial here in NZ recently, with another trial coming soon.

Adding the investigational drug telaprevir to standard treatment for hepatitis C infection cures about half the patients willing to give therapy a second try. That compares to a cure rate of just 14 percent among those who were re-treated with the standard regimen, according to researchers at Duke Clinical Research Institute.

http://www.youtube.com/watch?v=qwKJQgkdJ2s&feature=player_embedded

Happy Hepatitis month

best of Health

www.hcv.org.nz

April 8, 2010

April Hepatitis C New Zealand Blog

April Hepatitis C New Zealand Blog

How many People are treated for Hepatitis C in New Zealand ?

Someone asked me how many people in New Zealand get treated each year for Hepatitis C in  New Zealand.   I  hadn’t thought about that for a while and it would be nice to think New Zealand are treating more people now that three years ago but apparently not. New Zealand has treated around 400 people per year for Hepatitis C  each year for the last three years. There has been no increase in the numbers treated .

Scotland Hepatitis C

In Scotland a country of comparable size to New Zealand’s the Scottish government have set a goal of treating 2000  extra Hepatitis C patients per year.

New Zealand needs this kind of evidence based national goal to increase the numbers of people being treated.

Scotland Progress to date includes:

* Increasing the number of people treated for hepatitis C. NHS boards will treat around 800 new patients for Hep C in 2009-2010, compared with around 400 in 2007-08

* Significant infrastructure and service development for Hepatitis C treatment, care and support to increase treatment numbers further

* A Hepatitis C Managed Care Network (MCN) within each board area, made up of relevant specialists

* A learning and development lead at each health board to co-ordinate training for professionals who deal with people who have, or may have, the virus

http://www.scotland.gov.uk/News/Releases/2010/03/08094128

I found it interesting that

“Although most people contract hepatitis C through injecting drug use, 8 in 10 people currently infected are not currently injecting drugs.”

Scottish Public Health Minister Shona Robison

Do Needle-Exchange Programs Really Work?

A review of the evidence on the effectiveness of harm reduction interventions involving the provision of sterile injecting equipment in the prevention of hepatitis C virus (HCV) and human immunodeficiency virus (HIV) transmission among injecting drug users (IDUs). The interventions assessed were needle and syringe programmes (NSP), alternative modes of needle/syringe provision (pharmacies, vending machines and outreach) and the provision of injecting equipment other than needles/syringes.

http://www.thebody.com/content/news/art55845.html

“The main public health implications of the findings are that a higher level of coverage of interventions, including [NSPs], is likely required to reduce blood-borne virus transmission,” said Palmateer.

http://www.thebody.com/content/news/art55845.html

More evidence is emerging of the role  your genes play in the success of treatment for Hepatitis C

Duke University has been at the fore front of this research

Genetic variation in IL28B predicts hepatitis C treatment-induced viral clearance

It is well known that many patients will not be cured by treatment, and that patients of European ancestry have a significantly higher probability of being cured than patients of African ancestry. In addition to limited efficacy, treatment is often poorly tolerated because of side effects that prevent some patients from completing therapy. For these reasons, identification of the determinants of response to treatment is a high priority.

http://www.nature.com/nature/journal/v461/n7262/full/nature08309.html

Dr. Andri Rauch discusses his manuscript Genetic Variation in IL28B Is Associated With Chronic Hepatitis C and Treatment Failure: A Genome-wide Association Study.

A Facebook  page for Hepatitis C New Zealand Peer Support Project

We  www.hcv.org.nz  “a community of people with Hepatitis C trying to help other people who are affected by Hepatitis C.” have a face book page now you can  check it out here.

http://www.facebook.com/pages/Hepatitis-C-New-Zealand/99254558387

Best of Health www.hcv.org.nz

March 8, 2010

Hepatitis C New Zealand Blog March 2010

Hepatitis C conference  Whakatane 2010

Past Failures and New Solutions in Hepatitis B and C control in New Zealand and the Asia Pacific region
Tariana Turia – NZ Viral Hepatitis Conference 2010

Tuatahi me mihi atu ki te mana whenua. Tena koutou o Mataatua waka. Tena hoki koutou o nga mata waka kua whakarauika nei i raro i te karanga o te ra

Tena koutou i runga i te rangimarie. Tena koutou i runga i nga maharatanga mo ratou kua wheturangitia.

No reira, tena tatou katoa

I want to thank the Hepatitis Foundation of New Zealand for the honour of being invited to open this third New Zealand Viral Hepatitis Conference.

I acknowledge the local people of this rohe, and I thank them for their generosity in hosting us here in Whakatane.

I extend a particular welcome to our international guests:

* Professor Mitchell Shiffman from the United States;
* Professor Andrew Lloyd from Australia;
* Dr Morris Sherman from Canada and
* Dr James Fung from Hong Kong.

While both Hepatitis B and C viruses are notifiable conditions under the Health Act, it is only cases of acute infection which require to be notified to the Medical Officer of Health.

Alongside with the lack of awareness that comes from being asymptomatic; people with hepatitis may experience stigma and discrimination which compounds the problems of living with the virus.

So the call to do better is an important one.

We must continue to raise awareness, leading to increased testing and diagnosis.
Well spoken words from Tariana Turia

Life after liver transplant

Hi, This is my first post of my Video Diary following my Liver Transplant and my continued fight against my Hepatitis C infection/virus. Just a quick one to saay hello – I’ve never done video before and so let’s hope for all our sakes that I get better at it soon!

Please check out my blog: http://www.ianquill.blogspot.com – Thanks for watching…. Ian Quill

Hepatitis C Drug Trails NZ March 2010

Four drug trials for Hepatitis C in New Zealand at the moment (March 2010)
http://clinicaltrials.gov/ct2/results?term=hepatitis+c+New+zealand&recr=Open
1, TMC435-TiDP16-C206: A Safety and Efficacy Study in Chronic, Genotype 1, Hepatitis C Patients That Failed Previous Standard Treatment

2,  A Safety and Efficacy Study of the Combination of VX-222 and Telaprevir in Treatment-Naïve Subjects With Genotype 1 Chronic Hepatitis C Virus Infection

3, Safety and Tolerability Study of Clemizole Hydrochloride to Treat Hepatitis C in Subjects Who Are Treatment-Naive

4, Antiviral Activity of AZD7295 in HCV Carriers

Doctor  Magdalena Harris

thesis is available online now

Negotiating the pull of the normal: embodied narratives of living with hepatitis C in New Zealand and Australia (2010)
Harris, Magdalena , National Centre In HIV Social Research, Faculty Of Arts & Social Sciences, UNSW
My status as a person living with hepatitis C informed all aspects of this research project; I therefore also include my own experiences, foregrounding researcher reflexivity and the co-constructed nature of the interview process.

“ My aims are both practical and theoretical. On a practical level I explore the experiences of people living with hepatitis C in order to inform recommendations for policy, research and practice, while also working to elucidate and employ an approach that allows for an analysis of the ill body as a lived experiencing agent, located in a substantive web of connections whereby discourse, corporeality and sociality, inform and mediate one another. To this end I employ a “political phenomenology” influenced by phenomenological and poststructuralist theoretical approaches. The central, previously under-researched, issues that arose in participants’ narratives structure the chapter outline, with results chapters focusing on participants’ experiences of diagnosis, living with hepatitis C, stigma, support group membership, alcohol use, and hepatitis C treatment.

For many participants, it was found that living with hepatitis C was a liminal experience where distinctions between what it was to be healthy or ill were not clear-cut. Indeed, many of the participants’ narratives exposed the inadequacy of Western binary categorisations to speak to their experiences of living with hepatitis C. Throughout this thesis it can be seen that the meanings that participants ascribed to health, illness, and their hepatitis C were fluid and contextual, informed by the interplay of corporeality and discourse. From this interplay comes the ability to speak into the gaps of dominant discourses, creating the potential for the disruption, or subtle realignment, of normative ways of knowing. “
Download  your copy here
http://unsworks.unsw.edu.au/vital/access/manager/Repository/unsworks:7899

Congratulations  Dr Harris from all your peers.

The best of health
www.hcv.org.nz

January 30, 2010

Hepatitis C New Zealand blog January 2010 New Zealand Viral Hepatitis Whakatane 2010

Hepatitis C New Zealand blog January 2010 New Zealand Viral Hepatitis Whakatane 2010

New Zealand Viral Hepatitis 3rd NZ Conference Whakatane 2010

Friday 05 March – Saturday 06 March 2010
War Memorial Complex, Whakatane, New Zealand

Invited Speakers: Professor Mitchell Shiffman, USA

Professor Andrew Lloyd, Australia

Dr Morris Sherman, Canada

Dr James Fung, Hong Kong

Around half the conference will  be about hepatitis B and the other half hepatitis C

With topics such as

Relevance of viral  load; is it a predictor to HCC?  James Fung

Multidisciplinary approach of HCC in NZ  John McCall or Adam Bartlet

Therapies available for patients with HCC in NZ Catherine Stedman

State of the Art Lecture

Optimisation of Outcomes with current standard-of-care” (on use of baseline and
on-treatment responses (RVR, EVR) to individualiase therapy, weight-based RBV).
What’s next – direct acting antivirals (DAAs )Mitch Shiffman

HCV in Correctional Facilities

HCV prevention, treatment and follow-up in prison populations Andrew Lloyd

HCV in NZ correctional facilities Frank Weilert

NZ model in an Auckland prison Steve Gerred

Difficult-to-treat patients

State of Art Lecture
“Approaches to non-responders – retreatment, induction dosing IFN,
higher dosing RBV, maintenance therapy – do they work”  Mitch Shiffman

Alternative therapies for HCV

Is there alternative therapies for HCV treatment and do they work? TBA;   College of natural therapies

Middlemore audit of patients taking alternative therapy Jacinda Ryan

Hepatotoxic therapies Sarah Fitt

Debate: Should there be a national register for chronic HBV & HCV?

You can find out more about the conference at the hepatitis foundation of New Zealand Website here

http://www.hepfoundation.org.nz/conferencep.html

and register here

http://www.hepfoundation.org.nz/RegistrationForm2010.pdf

Our invite must have got lost in the mail and our budget of zero precludes travel. The joys of the peer based NGO.

New Zealand hep c news letter

Got my first email copy of the New Zealand hep c news letter , a joint effort by the Auckland Christchurch and Dunedin Hepatitis C Resources centres.

Well actually I accidentally deleted it so if you want to check it out Hepatitis C resource centre  0800 224372 (0800 22 HEPC)

A viral hepatitis testing pilot project in 19 pharmacies across the country has found a hepatitis B or C positive patient in every 6 tests conducted.

I mentioned this chemist based anonymous testing for hepatitis at English pharmacies a while back; the results of the trial have been interesting

19 pharmacies in 5 PCT areas offered free, on-demand hepatitis B and C dried blood spot tests to clients who had been at risk of contracting viral hepatitis as part of a 3-month pilot project organised by The Hepatitis C Trust. Across the pharmacies a total of 234 tests were conducted, diagnosing 35 people with hepatitis C (15% of tests) and 4 people with hepatitis B (2% of tests). This is a far higher proportion of hepatitis C positive diagnoses than found in GP surgeries, where 4% of tests find positive hepatitis C patients and 2% of tests find hepatitis B patients.

Dev Dalvar from D R Pharmacy in Sandwell PCT commented on the pilot: “Offering hepatitis B and C tests in my pharmacy has been a huge benefit to the local community. The people diagnosed will now be able to access potentially life-saving treatment and many customers are more aware about the viruses and risk factors.

Charles Gore, Chief Executive of The Hepatitis C Trust said: “It is a tragedy that increasing numbers of people with hepatitis C are dying, often because they have been living with the hepatitis B or C undiagnosed for years, even decades. There are at least 100,000 people living with the hepatitis C unawares but only 8,000 people were diagnosed last year. We desperately need a new approach to testing that will find the undiagnosed patients and this pilot study shows pharmacy testing could be just what is needed.

A series of Hepatitis C videos from the Harm reduction works

HIV, hepatitis C and injecting drug use, part 2: The sharing of injecting equipment

Best of health for 2010

www.hcv.org.nz

December 14, 2009

Hepatitis C New Zealand laboratory notification

Strategic Directions for Hepatitis C improving access to and uptake of hepatitis C treatment services.

One of the key points of this unreleased document, (Rumour has it will be never released as it involves the New Zealand Ministry of Health  acknowledging they have a major problem and actually doing something about it , i.e. spending money.)

Key action area 4 Improving knowledge about HCV prevalence in the New Zealand population and within sub groups.

HCV is a notifiable disease in New Zealand, but is really notified.

In Australia they operate a national registry for HCV the register gathers notifications from care providers and reference laboratories. Reference laboratory notifications in Australia make up 90% of all notifications.

It seems logical then to introduce  a laboratory notification system here in New Zealand to give accurate information on the number of people of people in New Zealand with HCV similar to what already occurs for HIV and aids notifications.

It seem a fundamental first step to dealing with any contagious disease is to effectively measure it’s prevalence we hope 2010 is the year the New Zealand  Ministry of health make this a priority.

Small chance of being diagnosed and treated for hepatitis C in New Zealand

I had an interesting conversation the other day.  Bob was saying how great he felt after completing Hepatitis C Treatment a couple of years back. We agreed the treatment sucked but the change in your health after completing successful treatment can be miraculous, he claimed to feel like he was 16 again, although I don’t feel that good the energy levels were back and I do feel healthy.

Bob claimed he could get up in the early morning climb a mountain shoot a deer, gut it out and climb back down with a dead deer on his back and then go and work all day. Me I’m just happy not to be constantly exhausted all the time.

Small chance of being diagnosed and treated for hepatitis C in New Zealand. Based on the fact that nationally approximately 300 people are treated per year and 50,000 are estimated to have hepatitis C. Made me feel lucky and thankful.

It always amazes just how wide spread people with Hepatitis C are and how little they talk about it because of the perceived stigma of the disease.

Some don’t seek hepatitis C treatment

NEW YORK, Nov. 10 (UPI) — U.S. researchers say patients with more difficult to treat forms of hepatitis C are half as likely to get treatment as those with easier to treat forms.

Dr. Thomas McGinn of Mount Sinai School of Medicine said the researchers also found marital status also affected whether patients chose treatment for hepatitis C.

“Overall, in general only about 30 percent of hepatitis C patients choose to initiate treatment for the disease,” the senior author said in a statement. “It’s a huge problem that needs to be addressed. This study confirms that genotype is a major barrier to treatment. We hope these findings will lead to changes in how physicians approach patient care in a way that increases the rate of treatment initiation.”

In this study, of the 168 treatment-eligible patients, 41 began treatment and 127 did not — or 24 percent sought treatment. Patients with genotypes 1 and 4 of the disease, which are less responsive to treatment, were less likely to initiate treatment, as were unmarried patients and patients with multiple diseases, or medical comorbidities.

The findings are published in the of Journal of Health Care for the Poor and Underserved.

http://www.upi.com/Health_News/2009/11/ … 257886770/

Hep c new treatment tested New Zealand

A recent news release about some successful hepatitis C   New Zealand Drug trial’s,  Interesting about US not allowing drug  trial within US, but ok for New Zealand and Australia etc

Hep c new treatment tested Wellington, Nov 6 NZPA – Researchers are claiming success in a New Zealand clinical trial of antiviral drugs used against the hepatitis C virus (HCV).

A combination of two experimental anti virals led to dramatic reductions in viral loads during the 13-day pilot trial, according to Edward Gane, of Auckland Clinical Studies.

Hepatitis C is a virus carried in the blood that can damage the liver, leading to cirrhosis (scarring), failure and cancer, and it has infected more than 30,000 New Zealanders.

The Food and Drug Administration (FDA) in the United States does not permit the illness to be treated without interferon- because of concerns such treatments could provoke resistance to drugs that might otherwise remain effective.

The drugs’ lead developer, Roche, said in a statement that phase two clinical trials would start early next year, though the studies must continue to be conducted outside the US because of the FDA policy on interferon.

Health Cheque

Been reading Health Cheque the truth we should all know about New Zealand’s public health system. A new book Gareth Morgan and Geoff Simmons

A great read about the New Zealand Health system, dissecting the subject well, what gets funded who gets treated; it’s well written and balanced in its approach.  Haven’t finished book yet but it is surprisingly readable, and insightful so far

Health Cheque link

NZ Needle exchange success

Thursday, 19 November, 2009 – 14:40 scoop link

Recent data has confirmed that New Zealand’s Needle Exchange Programme is one of the most successful in the world, but we could do even better, says Needle Exchange New Zealand National “Manager Charles Henderson.

He said, however, that a reduction in hepatitis C levels was the most pleasing result of all.

“Our 2004 study revealed that nearly three out of four New Zealand injecting drug users had been exposed to the hepatitis C virus. This year’s study indicates a significant drop in this statistic to around half.

Hepatitis C is a virus that can cause liver disease, leading to years of ill health and possibly even death. It can only be caught via the exchange of blood from an infected person. It is a significant risk for those drug users who share needles or other injecting paraphernalia.

The latest Household Drug Survey indicates 2 percent of New Zealanders inject or have injected drugs at some point in their lives, many of whom do so only occasionally or recreationally. This means 85,000 people are potentially susceptible to blood-borne viruses from drug use.” Charles Henderson

I   think needle exchanges are a good place to engage with active drug users with hepatitis C.  I think they are a key public health initiative New Zealand can be proud off. Lots of potential for preventative health savings in getting the needle exchange program working better and decreasing future spread of hepatitis C.

It is important to realise that the majority of people with hepatitis c don’t attend needle exchanges any more , Charles figures seem to suggest a 25% decrease in the numbers of people with hepatitis C attending  the needle exchange.

“The largest undiagnosed pool of people with HCV are likely to be those aged 40 – 60 years old, who were infected 25 – 40 years ago, who at that time occasionally (or even once) injected illicit drugs , but went on to lead ‘conventional lives’.  (Strategic Directions for Hepatitis C : Improving access to and uptake of hepatitis C treatment services.)

It seems that targeting hepatitis C education funding and programs to needle exchange programs misses the largest group of people with hepatitis C.   The needle exchange is a fantastic cost effective prevention and education program targeting active drug users not all people with Hepatitis c are active drug users.  Associating drug use and hepatitis C just builds and reinforces the stigma associated with Hepatitis C.

Jim Anderton MP made a great speech when opening the Christchurch needle exchange new location.

Anderton: Opening the new Rodger Wright Centre
Friday, 20 November 2009, 2:56 pm
Press Release: Progressive Party

“As a politician, I know that to make a difference to peoples’ lives, more often than not, means going the extra mile. I thank you for your commitment.

I wish we didn’t need this programme. I wish we didn’t have drug use causing the harm it does, wrecking the lives of many people, and wrecking many communities. But it does happen. It will keep happening.

And if we care about vulnerable victims then our responsibility is to reduce the harm to them as much as we can. The needle exchange programme does just that and I continue to support it for that reason.”

scoop here

Injecting, Infection, Illness: Abjection and Hepatitis C Stigma

Magdalena Harris

While Social Research has documented the prevalence and ill effects of Hepatitis C related stigma,

Magdalena discuses ways in which this stigmas is constituted

Three components central to hepatitis C stigma

1. illicit injecting

2. infectiousness and

3. societal aversion to chronic illness

Magdalena is a peer a great writer and world expert on Hepatitis C.  I always enjoy reading and learning from what she has to say, this contains some déjà vu moments where she has managed to capture the essence of many people’s experiences with Hepatitis C. Well worth a read.

Injecting, Infection, Illness: Abjection and Hepatitis C Stigma

Get tested campaign

Get tested campaign from UK  Words of wisdom from Topper Headon and others about getting treated  Get tested get treated now.

Get Tested! from Ross Aitken on Vimeo.

Have a great Holiday season

Best of health

www.hcv.org.nz

November 3, 2009

New Zealand Hepatitis C Blog The good news

New Zealand Hepatitis C Blog The good news

The Good News about Coffee

Patients with chronic hepatitis C and advanced liver disease who drink three or more cups of coffee per day have a 53% lower risk of liver disease
progression than non-coffee drinkers according to a new study led by Neal Freedman, Ph.D., MPH, from the National Cancer Institute (NCI).
The study found that patients with hepatitis C-related bridging fibrosis or cirrhosis who did not respond to standard disease treatment benefited
from increased coffee intake. An effect on liver disease was not observed in patients who drank black or green tea. Findings of the study appear
in the November issue of Hepatology, a journal published by Wiley-Blackwell on behalf of the American Association for the Study of Liver Diseases.
Three cups a day and a 53% lower risk of progression that has to make coffee a good option for those with hep c.

http://www3.interscience.wiley.com/journal/122511224/abstract?CRETRY=1&SRETRY=0

The Good news for new treatment options  Telaprevir

Good news for People with Genotype one Hepatitis C is the latest results of the new drug telaprevir
Cork, Ireland (October 31, 2009) –Tibotec announced today results of a new study (VX950-C208), which showed that sustained virologic response (SVR)
was achieved in more than 80 percent of treatment-naïve patients with chronic genotype 1 hepatitis C virus (HCV) who took telaprevir, administered either
every 8 hours or every 12 hours, in combination with standard of care. Telaprevir, an investigational STAT-C (Specifically Targeted Antiviral Therapy for hepatitis C),
is being co-developed by Tibotec in collaboration with Vertex Pharmaceuticals. The study was presented today at the 60th Annual Meeting of the
American Association for the Study of Liver Diseases (The Liver Meeting).

In the phase II study, which enrolled 161 treatment-naïve genotype 1 patients, rates of SVR (defined as undetectable HCV RNA at 24 weeks after completion of treatment)
ranged from 81 to 85 percent in patients treated with the every 8 hour telaprevir-based regimen, and 82 to 83 percent in patients treated with the every twelve hour regimen.
Adverse events (AEs) were similar to those observed in other trials with telaprevir and were mainly haematologic (anaemia) and cutaneous (rash and pruritus) in nature.

For the vast majority of patients, these high SVR rates were obtained with only 24 weeks of total treatment (half the duration of current standard of care).
Total duration of treatment was decided using a criteria based on treatment response. Subjects who achieved undetectable HCV RNA at week 4
(rapid virologic response or RVR) and maintained this through week 20, were allowed to stop all treatment at week 24. Only 18% of subjects were required to continue standard treatment up to week 48.

Source: Johnson & Johnson Services

Good news for me

My post treatment 24 week viral load came back undetectable

testviralload

The Good news from www.womanaloud.co.uk

Had some good feedback from my last Blog post In particular from Tracy  at  http://www.womanaloud.co.uk/index.html A peer among peers.

” I wish you good health and a sharp pen. Raising awareness of hepatitis C is an uphill struggle… but day by day, one step at a time, it is happening. It is interesting to consider that, if we could get over the brain fog ; D, there are enough of us in the world with this condition, to form our own group/religion/club… if 180 million sufferers were all to shout on the same day, at the same time… mmm … I think I’ll put the kettle on. ”

Thanks Tracy great message. Just off to have a cup of tea myself,  maybe  a coffee as it seems that may be better for me.

Best of Health


www.hcv.org.nz

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