New Zealand Hepatitis C

Last Blog of the year 2008

 

Wish everyone reading this the best for 2009

I’m half way through my hepatitis C treatment now it’s been challenging, my empathy to anyone with hepatitis C.

My advice, prevention,  get tested,   get treated

Pete Doherty advice on what not to share

 

A recent study revealed,

 Patients who do not initially respond to standard drug therapy for treatment of hepatitis C are unlikely to respond to long-term maintenance therapy as well, according to a new study.

Yet many patients who do not at first respond to drugs are placed on maintenance therapy, which is expensive and can be both physically and psychologically gruelling , in hopes that long-term treatment will keep the disease in check. The practice is ineffective and possibly harmful, the study’s authors said.

Read more here

 

More research in to who will be likely to be successful in drug treatment for Hepatitis C

“He suggests scientists could design a test to see if the viruses infecting these patients have these genetic characteristics to determine whether or not standard hepatitis C therapy is likely to work.

“The side effects of the medicines to treat hepatitis C are terrible,” Tavis saids. “Why beat on a patient for a year if the treatment isn’t going to work anyway?

“On the other hand, if we know the medicine is likely to work, we can coax patients to stick with the therapy. It would help doctors to positively support their patients through trying times.”

In addition, hepatitis C therapy is very expensive, with a course of treatment costing up to $30,000. A custom test that determines whether a patient would benefit from the treatment could be developed for about $100 per sample and given to patients before the standard treatment is prescribed, Tavis said.

“If the test shows the treatment won’t work, physicians could counsel against interferon-based therapy, avoiding tens of thousands of dollars in expenses and painful side effects for the patient,” Tavis said. “It’s wasteful to spend millions of dollars on medicine that won’t work.”

Established in 1836, Saint Louis University School of Medicine has the distinction of awarding the first M.D. degree west of the Mississippi River. Saint Louis University School of Medicine is a pioneer in geriatric medicine, organ transplantation, chronic disease prevention, cardiovascular disease, neurosciences and vaccine research, among others. The School of Medicine trains physicians and biomedical scientists, conducts medical research, and provides health services on a local, national and international level.

 

Read more

 

 

“U.S. healthcare workers are now significantly safer from needle stick injuries, according to a new study from the University of Virginia International Healthcare Worker Safety Center.

 

The study also found that the largest reductions in injury rates were for two devices with the highest risk of transmitting infections. These two high-risk devices, phlebotomy needles and I.V. catheter needles, showed reductions of 59 percent and 53 percent respectively.

The Centers for Disease Control and Prevention estimates that U.S. healthcare workers sustain an estimated 384,000 needle stick injuries each year. According to figures from the World Health Organization, nearly three million healthcare workers worldwide are exposed to blood borne diseases in the course of their work every year, resulting in as many as 15,000 hepatitis C infections, 70,000 hepatitis B infections and 500 HIV infections annually. More than 90 percent of these occupational infections occur in developing countries - precisely where health workers are scarcest.”

 

Read more

 

Hopefully 2009 will be the year of action on Hepatitis C Education Support and Treatment here in New Zealand

It’s also our first birthday for the web site in 2009, we intend to celebrate with the unveiling of our New Website with a new design and content planned.

On a personal level i want to thank all those who have supported me in my journey through treatment I’ve got my fingers crossed and am feeling good, looking forward to 2009.

 

Best of Health

www.hcv.org.nz

A dose of the hepatitis C blog ,

had my dose of Roferon this evening and can’t seem to relax.

I gave up drinking coffee before I started treatment and to be honest haven’t missed it saved a lot of money, then along comes this study

“ As reported at the 59th Annual Meeting of the American Association for the Study of Liver Diseases in November 2008, an increase in coffee consumption may slow the progression of liver damage caused by Hepatitis C. “

No plans to start drinking coffee again for me but a reason perhaps to not stop drinking coffee if you have hepatitis C

The treatment pathway is along and challenging journey through a varied mind scape for some it is not successful and others it works and they achieve a svr Sustained Virological Response.

  Proteomics is the large-scale study of proteins, particularly their structures and functions.[1][2] Proteins are vital parts of living organisms, as they are the main components of the physiological metabolic pathways of cells. The term “proteomics” was coined to make an analogy with genomics, the study of the genes. The word “proteome” is a blend of “protein” and “genome“.

And you may ask what does Proteomics have to do with Hepatitis C ?

Researchers from the Duke University Clinical Research Institute found a similarity among those with Hepatitis C who are among the 50 percent who do not respond to interferon-ribavirin combination therapy. Presented October 31, 2008 at the annual meeting of the American Association for the Study of Liver Disease, the Duke researchers used proteomics to identify specific proteins that foretold the likelihood of Hepatitis C treatment success.

With 90 percent accuracy, three clusters of proteins in the blood samples were found to predict who would respond to therapy and who would not.

Read more here

Some one emailed www.hcv.org.nz  a interesting question that all people with hepatitis C face disclosure

 ” Hello,

What are the legal requirements, if any,  you must do to inform a  partner or employer
that you have hepatitis C.
”

 

It thought I would ask my too favorite Hepatitis C professionals their expert opinions

and here is what they said, which deserves a wider audience

***note these are not legal opinions for that you need to ask a lawyer***

The Hepatitis C Educator reply

As far as I’m aware, as HCV is not a notifiable infection, there are no legal
requirements to disclose anyone’s HCV status to a future or current employer. In other
words you can’t loose your job just ’cause you have Hep C. If an employer fires staff for
being HCV+, then they are in big trouble. It’s called unfair dismissal. Also, an employer
cannot force an employee to reveal their HCV status.
Now, as far as the partner situation goes, if the relationship is a healthy and loving
one then personally I would tell my partner. Once again, there’s no legal requirement to
do so. But a moral one, I would like to think so. If you like, pass my mobile number
and/or the HCRCO email and phone number on, and inform that I’m free to talk about any of
this kind of stuff.

0800 224372 (0800 22 HEPC)    To contact your nearest hepatitis  C resource center

The hep c nurse

Hi
From my understanding there are no legal requirements to inform.

To be in a relationship and wishing to continue in a relationship I
would have thought you would want to inform your partner…….it
doesn’t lead to a good relationship to deny someone that information.
It can become very nasty when they suddenly find out (this is from
experience)
The person infected with Hepatitis C needs to have a good understanding
about the spread of the disease; to risk spread and infecting their
dearly beloved.  ie no sex toys, use condoms during menstruation or when
there is any genital lesions, keep cuts and wounds covered, keeping
razors for personal use only etc etc
Hope this helps

…………………………

On a personal level I don’t tell everyone I meet, I am aware stigma and discrimination exist and keep my Hepatitis C status on the down low.

I tell my partner and family and close friends I tell it’s selective, everyone is different. I practice tactical disclosure.

Magdalena has some great information in her thesis on how different peers deal with the issue.

And we wrote a blog post about disclosure here.

Ive been watching a few videos lately

lifestyle issues and hepatitis C prt 1

Video by internationally renowned hepatologist/liver disease specialist Melissa Palmer, M.D. on lifestyle issues and hepatitis C.

 

 

 

 

I’m much more relaxed now I’ve let the inner blog out to play

Best of health

 

www.hcv.org.nz

Andrew Loog Oldman has become a patron of the English hepatitis C Trust. Here he talks about he manages his own illness and why he decided to become a patron.

Linda from AHCS - Australian Hepatitis C Support .Has a great report on recent Brisbane Hep C Conference

I saw this in a New Zealand newspaper , I think it is going to be a much more common experience for the public to have to deal with these consequences of a under treated epidemic in New Zealand.

“A Dunedin couple has warned people to think of their own safety before giving mouth-to-mouth resuscitation to someone they do not know, after helping out at this accident on South Rd last month.

The 57-year-old motorcyclist died suddenly, falling from his machine as he travelled north in South Rd and the vehicle subsequently crashed.

The couple, who do not want to be named, went to the aid of the motorcyclist, he giving mouth-to-mouth and she doing chest compressions, but were unable to resuscitate him.

He was told the man had hepatitis C, and was believed not to have visited a doctor in a while, so they were advised to have tests for four infectious diseases, including HIV. ”

The Hepatitis C epidemic in New Zealand is  under-treated and growing exponentially it is so stupid not to make it a priority

Scotland seems to have a more practical approach

NHS Tayside has been allocated£2.7 million and Mrs Eriksen outlined plans to spend the cash on increased screening for the virus and treating more people with the infection.

While not all people with the virus are injecting drug users or have been so in the past, that is where the most significant problem lies.

Mrs Eriksen said treatment will be offered in both the specialist Hep C and drug treatment services. She explained that the drug treatment service offered the best opportunity to “engage” the most-at-risk group — those using drugs — because they are already in contact.

Treatment would be provided by existing staff in the drug treatment service with an additional two nurses. Staff in the treatment service would receive additional training to allow them to carry out a testing programme to identify people with the virus.

Part of the cash will be used to provide injecting equipment and further develop Tyside’s needle exchange service, which seeks to reduce harm by ensuring drug addicts have ready access to clean needles and safe disposal of used needles.

In New Zealand meanwhile we wait, while the virus spreads and the risk to the good Samaritan  grows

best of health

www.hcv.org.nz

Hepatitis C New Zealand Blog Time

 

or as I like to think of it time to not do something else,

cloudy interferon day my brain hasn’t quite engaged Ive gone through the motions but.

What’s been happening, New government in New Zealand, I wonder if they will be better than the last lot at dealing with epidemics, time will tell ?

Ive been taking the Interferon Ribavirin combination for six weeks now fingers crossed it’s draining but hopefully a positive health experience.

The web site re design is in progress, when my brain works and I have free time so may take a while but progressing.

Interesting news

SAN FRANCISCO, Nov. 4 — New treatments for hepatitis C hold promise for adults, For children, American Association for the Study of Liver Diseases.

Watch the video

 

 

“I caught hepatitis C at birth - but now I’m cured “ There are many way’s to catch Hepatitis C

 

Louise had contracted the virus - which can survive in blood outside the human body for up to three months - from her mother who had herself been infected by a blood transfusion while giving birth.

‘Mum was diagnosed in 2000 after reading a magazine article that advised those who’d had a blood transfusion before routine screening began in 1991 to get tested,’ says Louise.

‘We were all tested but while my brother and sister got the all-clear, I was positive. It was a terrible shock.’

read more

 

Is it cost effective to treat people in Prison ? Yes according to a recent study

 

Hepatitis C Treatment Is Cost-effective For The US Prison Population (Los Angeles, United States)

Treating all U.S. prisoners who have hepatitis C with the standard therapy of pegylated-interferon and ribavirin would be cost-effective, according to a new study. U.S. prisons incarcerate more than 2 million inmates each year, and between 12 and 31 percent of them are infected with chronic hepatitis C (HCV), mostly related to high rates of intravenous drug use. The current standard treatment for HCV has been shown to be cost-effective in the general population and the Federal Bureau of Prisons recommends HCV treatment for those who meet the AASLD’s criteria for treatment, as long as therapy is likely to be completed.

For full story: http://www.sciencedaily.com/releases/2008/10/081020150617.htm

 

 

New Hepatitis C drug report from American Association for the Study of Liver Diseases (AASLD) conference Drug Pipeline Updates from AASLD
by Alan Franciscus,  hcvadvocate

At the recent American Association for the Study of Liver Diseases (AASLD) conference there were many posters and presentations on new drugs that are in development to treat hepatitis C. This overview will present top line results on many new drugs. Telaprevir , Boceprevir ,Nitazoxanide , and more

 

 I’m still watching a you tube video blog / treatment diary of a DJ musickey who is undergoing treatment for hepatitis C , Hes’ had a few ups and downs as we all do going through treatment so it’s good to see he has reached his 74 th video blog the electronic narrative of the disease, challenging, inspiring stuff thanks for sharing his Hepatitis C  journey here.

 

 

 

 

 

 

That’s it for this blog

 

Best of health

 

www.hcv.org.nz

 

 

 

 

 

Brisbane image by Christolakis

 

The 6th Australasian Viral Hepatitis Conference highlights and comments : Brisbane October 2008

This year there was a strong emphasis on hepatitis B, and the urgent call for a National Hepatitis B Strategy rang clearly across the three day meeting.

“almost 500 delegates ensured that this meeting was terrific event. “

“The conference was held back to back with the Australian Gastroenterology Week
meeting, which meant a good attendance of specialists.”

“The conference had a mix of epidemiology, community responses and
research and basic science. “

“It was a pretty dry conference with rather too much clinical stuff and little, it
appeared to me, of relevance to the situation in NZ. “

“It was a great conference though for catching up with lots of people - and I felt really
wiped out for a good few days afterwards. “

“well catered “

“great opportunity to catch up and share experiences”

Some key presentations

During the opening plenary, Stephen Locarnini, Head, Research and Molecular Development, Victorian Infectious Diseases Reference Laboratory, Melbourne, Australia

gave a hypothetical scoop on how the media would respond if hep B were discovered in 2008: headlines like

“Killer Disease Impacts on 250 Million Globally” and
“2 Million Dead Every Year” –

A far cry from where things really are in 2008.  Mr Locarnini also suggested that one of the biggest barriers to
managing hepatitis B in Australia is, ironically, our reliance on the vaccination.
Jacqui Richmond spoke on her qualitative research, due to be released in May 2009. Some of her points of interest were:

• 85% of respondents preferred face-to-face peer support
• Peer educators required proactive training in the communication of Hepatitis C, as personal stories were not always representative
• More education now leads to less stigma later
• Fear, stigma and discrimination prevented people living with Hepatitis C from accessing treatment
• 62% of the patients in the study diagnosed by their GP; of which only 49% were referred to a liver clinic for treatment
• 50% of the respondents identified GPs as the worst providers of Hepatitis C information but 50% said GPs gave the best physical support.

Jacqui’s paper is to be published in May 2009.

Max Hopwood from the National Centre in HIV Social Research reported data from his qualitative research on ‘Post treatment outcomes’.Major themes of the study showed that clearing the infection minimized future illness, released people from stigma and improved quality of life.

However, there are potential long-term complications arising from treatment. Interview participants reported a variety of sustained physical and psychological after-effects from the Hepatitis C treatment. No end-of-treatment advice being given and treatment ending abruptly were both documented as problems. Participants also reported difficulty in coping with treatment after-effects, with a substantially reduced end-of-treatment quality of life. Some of the problems identified included cognitive difficulties, persistent neurotoxicity and immune system disorders.

Non-responders to Hepatitis C treatment reportedly mourn the loss of their future, the ‘loss of future memory’. Further, there is also the fear for their future health from hearing other people’s horror stories.

Alcohol use and Hepatitis C Everyday resistances: Safe to drink? Alcohol use and hepatitis C. Magdalena Harris, Fantastic peer presentation on the perspectives and peer experiences of alcohol and Hepatitis C

Matthews GV - Frequency of Rapid Virological Response and Its Utility as a Predictor of Treatment Outcome in Individuals Treated within the Australian Trial in Acute Hepatitis C (ATAHC) Rapid virological response (RVR) early in hep C treatment was widely shown to be a strong predictor of SVR (Sustained Virological Response, or cure).  This has implications for greater predictability of treatment success

A number of presentations strongly challenged the notion that all current drug users were inappropriate for hep C treatment, demonstrating that with appropriate support and screening, their success rate was comparable to any other group accessing treatment.

Prof Greg Dore reminded us that while there appears to have been a reduction in the notifications among 15-19 year olds (and evidence that testing patterns have stayed the same), the incidence of hep C in young
women under 20 has doubled.

More evidence was presented to remind us that hep C superinfection (or being infected with more than one genotype or strain of hep C) can and does happen to a significant proportion of people that have had multiple
exposures to hepatitis C.

Presentation - Tina Cooper

Supply and Demand: Strategies to Increase the Liver Donor Pool the paper talking about the need for more people to register as donors, held on the last day,
Presentation - Professor Ian Gust What if: Implementing a National Vaccination Program for HCV - Lessons Learnt from Other Strategies how close we are to having a working vaccine for HCV (also on the last day)
Keynote Speaker - Professor Ed Gane Issues with Liver Transplantation for Hepatitis C

Ed Gane’s talk of Liver Transplantation (especially how a liver will become HCV+ if given to an HCV+ patient)

…………………………………………………………………………………………………………………..

You can find a copy of  Alcohol use and Hepatitis C Everyday resistances: Safe to drink? Alcohol use and hepatitis C. Magdalena Harris, here

Thanks to the Daily Dose The World’s leading drug and alcohol news service for linking to this article about the issues we all face with our drinking choices and hepatitis C.  I highly recommend this daily dose of news.

Thanks to those who contributed info on conference additional feedback from conference attendees welcome email us your comments recommendations admin@hcv.org.nz or leave a comment below.

Its been a long week, im off to have my Roferon injection

best of health

www.hcv.org.nz

News this Hepatitis C New Zealand blog 31 October 2008

All you budding pharmaceutical magnates wanting to make a dollar or two out of hepatitis C

should be all over this one……

 

 

 

15 October 2008

Dear Supplier

REQUEST FOR PROPOSALS – SUPPLY OF PEGYLATED INTERFERON AND RIBAVIRIN

PHARMAC invites proposals for the supply of pegylated interferon and ribavirin in New Zealand

 

The document is actually quite informative

 

http://www.pharmac.govt.nz/2008/10/15/2008-10-15%20-%20Pegylated%20interferon%20RFP%20document.pdf

 

a Price list of what combination therapy costs in New Zealand.

 

 

Price list of what combination therapy

Strength and presentation Price and subsidy

Inj 50 mcg x 4 with ribavirin cap 200 mg x 112 $1080.40

Inj 50 mcg x 4 with ribavirin cap 200 mg x 84 $976.80

Inj 80 mcg x 4 with ribavirin cap 200 mg x 140 $1583.60

Inj 80 mcg x 4 with ribavirin cap 200 mg x 168 $1687.20

Inj 80 mcg x 4 with ribavirin cap 200 mg x 84 $1376.40

Inj 100 mcg x 4 with ribavirin cap 200 mg x 112 $1746.40

Inj 100 mcg x 4 with ribavirin cap 200 mg x 84 $1642.80

Inj 120 mcg x 4 with ribavirin cap 200 mg x 140 $2116.40

Inj 120 mcg x 4 with ribavirin cap 200 mg x 84 $1909.20

Inj 150 mcg x 4 with ribavirin cap 200 mg x 140 $2516.00

Inj 150 mcg x 4 with ribavirin cap 200 mg x 168 $2619.60

Inj 150 mcg x 4 with ribavirin cap 200 mg x 84 $ 2308.80

 

Information includes How much PEGYLATED INTERFERON AND RIBAVIRIN has been supplied in previous years.

 

How much they want to buy next year, Looks like the big increase in access to treatment is to be delayed somewhat.

Interested SUPPLY OF PEGYLATED INTERFERON AND RIBAVIRIN Contact Greg Williams at PHARMAC by telephone (04) 916-7524 or email greg.williams@pharmac.govt.nz.

 

No wonder my local MP Pete Hodgson now refuses to answer questions about his hollow promises to the 50,000 New Zealanders with Hepatitis C. Sure hasn’t increased access in his electorate in 2009…..

 

“Hon Pete Hodgson

Minister of Health  5 December 2006 Media Statement  In addition, $5 million per year

will be invested to improve access to, and uptake of, hepatitis C treatment services.”

 

 

Waiting to be treated for your genotype three with Pegylated Interferon. Well Pharmac has that under consideration since May 2007. I would not hold my breath waiting for that approval.

 

The 6th Australasian Viral Hepatitis Conference is over now and thanks for the comment on the last blog post from Paul

 

“Hi, yes, it is pretty important for those of us who went to the conference to report back. We plan to run some stuff in our magazine, The Hep C Review, but because current edition is just about to go to print, this won’t happen until the next edition (Mar 2009). If I hear of anything beforehand, I will post it on the Australasian forum http://www.hepcaustralasia.org
Regards, Paul, Hep C Council NSW (www.hepatitisc.org.au) “

 

My self , I heard the conference was full of professionals and a few peers. and well catered apparently food was a high point of conference who says there are no free lunch’s ?

There is still no content any where online, guess the 400 hundred attendees are not the sharing kind ? Or maybe they just haven’t heard about the new fangled inter net thing.

Some good news, The Hepatitis C Resource Centre Auckland , Te Ika a Maui  www.hepc.org.nz  site has been updated and now has forums worth a check out.

Other news here in New Zealand.

 

The labour minister of health Hon David Cunliffe scuttled off to his election.

Hon David Cunliffe has decided the 50,000 New Zealanders with hep C don’t need to know any more facts and figures as he is now ignoring official information act request’s. Meanwhile the ombudsmen is delaying her decision, on his refusal to release public information on the epidemic and the govts response ……more ……………. after the election….. ????

Hon David Cunliffe obviously hasn’t learn t any thing from the Prime minister, Helen “bad blood” Clark

Her inaction when she was minister of health failing to protect the blood supply

Helen Clark, bad blood update Monday, 07 April 2008 NZPA “So far, 486 victims have applied for one-off payments and the Government has paid out $25.5m. Most of the affected haemophiliacs — about 155 — have received packages from $43,200 to $69,600, enabling many to start a chemotherapy-type drug course for hepatitis C.”

“Testing for hepatitis C became feasible in February 1990, however, New Zealand did not introduce nationwide screening of blood donations for hepatitis C until 27 July 1992.”

New Zealand was the second to last country in the developed world to introduce blood screening measures for hepatitis C. As a result, countless people with haemophilia were infected and re-infected with the potentially deadly hepatitis C virus by the treatment products they depend on to enable their bodies to stop bleeding . The Haemophilia Foundation of New Zealand Inc. (HFNZ)     NZF web site

 

Thanks for that Hon Helen Clark and Hon Simon Upton.

Hon David Cunliffe is following in their foot steps and as minister of health has been creating an even bigger mess, by failing to deal with the epidemic and treating New Zealand community as a giant test tube in which to grow hepatitis C, his and the New Zealand Ministry of Health demonstrate ongoing incompetence in dealing with a preventable and treatable disease.

They need to wake up and deal with it now. Identify those at risk, test them, treat them and save the country millions if not billions of dollars of future health costs.

 ”will cost the country dearly in coming years. He says there will be a multiplier effect in terms of increased health costs through extra GP visits, diagnostic tests, hospital outpatient follow-up, and inpatient admissions for liver cirrhosis and liver transplants.”
Ian Sheerin National Addiction Centre Christchurch School of Medicine and Health Sciences University of Otago

How many more will have to suffer ?…..

 

Best of Health

 

www.hcv.org.nz

 

 

 

 

 

 

A few random thoughts for this week,

Ive been measuring my life out in Ribavirin Tablets and Roferon A (interferon) injections.

It’s easy enough to function but doing things that require mental effort are delayed. I feel a bit confused by the drugs but no major side effect yet, fingers crossed.

 

A few weeks ago , I got an email from Sanjiv Syal whose story is quite inspirational.

 

Hi,

Came across your website on the web

I am an HCV patient and my story is attached; I would be happy if you take the time out to read it and reach out to the HCV community and share my experience with them.

I hope it will motivate patients to be optimistic, keep the faith and carry on with their lives, while dealing with the disease!

Thank you & I look forward to hearing from you…

Warm Regards

Sanjiv Syal

” A wise old man once said “Disease is what you
have and illness is how you react to it.” Most
patients share their experiences after they have
had successful outcomes; I would like to share
mine as I traverse this journey with the hope
that I might inspire a few of us (out of the 180
million infected worldwide with HCV) who are
finding it tough to cope with situations or are
losing the will to fight. I hope my story touches
a chord or two and provides emotional support
and encouragement. ”

you can read Sanjiv Syal ’s  story here

http://www.hcvadvocate.org/community/stories/Sanjiv.pdf

The other news happening is the 6th Australasian Viral Hepatitis Conference.

The 2008 conference is in Brisbane at the Convention & Exhibition Centre, South bank on Monday 20 October to Wednesday 22 October ,

The program is here. http://www.hepatitis.org.au/program/

It’s got some interesting stuff happening but you and I the people actually effected by hepatitis C are un likely to hear anything, a recent search of the Internet revealed little content from the conference.

There is a media release page here http://www.hepatitis.org.au/media/

Best of health

www.hcv.org.nz

Treatment

The standard treatment for Hepatitis C is Pegylated Interferon plus Ribavirin.

Unfortunately here in New Zealand if you have genotype three you are only eligible for Interferon and Ribavirin which is less effective than the Pegylated Interferon.

Monday I started treatment for the first time for genotype three.

I definitely feel the effects of the medication I just think I felt the effects of my hepatitis C, more so overall I am am willing to suffer for six months to attempt to rid my self of this virus.

I inject myself intramuscular with Interferon three times a week and take Ribavirin tablets twice a day.

This video explains how to administer Interferon using a roferon-pen  something i now do every two days

 

Lately I’ve been watching a you tube video blog / treatment diary of a DJ musickey who is undergoing treatment for hepatitis C. I like to learn from others experiences and watch the progress of treatment and to see what to expect.

Watching DJ musickey progress from day one of treatment to month two has been a informative and educational experience.

 

The New Zealand news this month is from Christchurch,

Bill Jangs editorial from the Christchurch Hepatitis C Resource Centre News Letter Connexions for September 08, It gives the details on the new Christchurch Community Hepatitis C Clinic.

http://www.hcv.org.nz/chchclinc.html

No actual treatment yet but lots of support and testing education and counseling with free Doctor one day per week. 0800 224372 or Christchurch 3663608

If you want to receive a copy of the Connexions news letter email hcv@xtra.co.nz

The other local news from Christchurch is the Canterbury District Health Board reply to our questions about Hepatitis C treatment in Christchurch.

Mr Murray Dickson Christchurch DHB answers questions about Hepatitis C in Christchurch

http://www.hcv.org.nz/CHCHOIA08.html

In comparison to Dunedin figures it seems at first glance to be a big improvement on Otago’s appalling waiting lists

Mr Brian Rousseau Chief executive Officer Otago District Health Board answers questions about Hepatitis C in Otago

http://www.hcv.org.nz/otagoaudit08.html

I interesting article about some of the future treatment options is also new on the site and very informative.

New Directions in Hepatitis C Therapy: A Look at the Evolving Therapeutic Arsenal

http://www.hcv.org.nz/hepcnewtreat.html

Voices of Liver Disease Naomi Judd

This is a video from the ALF (American Liver Foundation)with Naomi Judd speaking about her diagnosis with Hepatitis C.

 

 

Best of Health

www.hcv.org.nz

 

 

 

Hepatitis C sufferers miss out on treatment

Social Injustice is killing people on a grand scale

“the unequal distribution of health damaging experiences is not in any sense a ‘natural’phenomenon but is the result of a toxic combination of poor social policies and programmes, unfair economic arrangements, and bad politics.”

WHO commission on social determinants of health.

This statement pretty much sums up New Zealand health policy so far on Hepatitis C.

New Zealand treats approximately 600 people per year for Hepatitis C

Of the 600 treated approximately 60% over all will clear the virus

So 360 people a year are cured (Sustained Virological Response) of Hepatitis C

Approximately 50,000 New Zealanders have hepatitis C

So in New Zealand 99.38 % of New Zealanders with Hepatitis C are not being treated in any given year..

A limitation in New Zealand, is accurate data on the quality and timeliness of health care for hepatitis C there is little research done and their needs to be a grater attempt to measure accurately the scale of the problem

The official ignorance regarding this important disease is part of a circle of neglect. The costs, and mortality and morbidity rates of hepatitis C do not cause alarm because they are not measured.

Hepatitis C needs a policy to decrease the rate of new infections, identify those already infected and provide effective therapy for those who need it. To meet the unmet health needs of the 49640 New Zealanders with hepatitis C.

figures above come from NZ ministry of health press release 08

http://www.hcv.org.nz/minhealth08HDAY.html

 

Best of health

www.hcv.org.nz

 

 

 

 

 

 

                                              Hepatitis C is a disease with a attached stigma for many of past drug use and for others who    have contracted Hepatitis C in other ways they still must deal with a perception of past drug use.

For some people, disclosing (or telling others) that they have hepatitis C is not easy.

You may be worried that you will be treated differently once people know you have hepatitis C.

It’s a personal choice lets consider some of the issues involved.

Perhaps you will be discriminated against?

Maybe your friends will no longer want to be around you?

Will you lose your job or be treated differently at work?

It is important that you find out as much as you can about hepatitis C before you tell others. Giving people accurate information about hepatitis C (including booklets, pamphlets and information from the Internet) often helps correct wrong ideas they may already have about hepatitis C, and people with hepatitis C.

A positive, supportive response is the best outcome, but you might also get a negative reaction, and it’s important to be prepared for this. If this happens, remember that it is because of the beliefs and understandings of the person you have disclosed to. People react the way they do because of the information (or lack of information) they already have about hepatitis C and people with hepatitis C, and their beliefs about that information.

There are benefits in telling people you have hepatitis C.

Friends and family members can offer valuable support at a time when you may be feeling uncertain about your future and scared about your health.

They can help you cope with your feelings when you find out you have hepatitis C.

They can help you deal with the physical and mental challenges of treatment and can support you if you are discriminated against because you have hepatitis C.

There are lots of issues around disclosure and Hepatitis C If you want to talk to someone about your situation

Hepatitis C Resource Centre’s

Telecom Toll Free 0800 224 372 (NZ Only) number will connect you to your closest centre

If you feel you have been discriminated against in a Healthcare setting one option is to talk to the friendly staff at the Health and Disability Commission (New Zealand) who promote the rights and responsibilities of consumers and providers and to resolve complaints Phone 0800 555 050 (New Zealand only)

Another great resource is Living with Hepatitis C in New Zealand Narratives of Chaos and Quest by Magdalena Harris which discusses disclosure and many other issues facing peopl with Hepatitis C in New Zealand

http://www.hcv.org.nz/magindex.html

A fantastic Australian resource is MY CHOICE TO TELL : DISCLOSURE INFORMATION FOR PEOPLE WITH HEPATITIS C produced by Hepatitis Australia Publications, available from their website http://www.hepatitisaustralia.com/resources/publications.html

and discusses many issues including

Do I Have to Disclose?

Disclosing to Friends and Family

Disclosure and Children

Disclosing at Work

Disclosing to Health Care Workers

Best of Health

www.hcv.co.nz