Written by LINDA MCINNES (AHCS)
Editor/Administrator
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Hepatitis C Conference - Brisbane, October 20th - 23rd, 2008

I attended the above conference as a person with Hepatitis C and the Editor/Administrator of the Australian Hepatitis C Support - AHCS Website.  I was sponsored by Roche Pharmaceuticals to attend the conference and I remain deeply grateful for their support.  Roche Products is a world leader in in-vitro diagnostics and medicines in various areas including virology.  In Australia, Roche offers a range of patient support materials, compassionate access to PEGASYS, education programs and is committed to clinical research to optimize patient treatment with PEGASYS.

There were 500 registrants attending the conference and Maroochy, an Australian Aboriginal, sang a 'Welcome to the Country' song to open the conference.

As it was my first conference there were a lot of presentations and I could not attend all of them as they were held in 3 different conference rooms and some intermingled with the other.  Hepatitis B was also a part of the conference and I did not attend any of these sessions as my sole interest is in Hepatitis C.

A few other hepatitis C forum members from the Hep C Australasia and AHCS - Australian Hepatitis C Support websites were also present at the conference, this enabled us to meet each other for the first time and also offer support during the conference.  Online forums are very important for patients with HCV, they can remain anonymous, express their anguish living with this disease and often they are overwhelmed and relieved with the online support, information regarding HCV, treatment and sharing they will find.
The AHCS website/forums provide an assortment of information in relation to Treatment, Health Hubb, Vitamins and Supplements, Information Station, Symptoms News, Alternative Therapy, Latest News and also links to all the other Hepatitis C Councils within Australia.  If a person cannot find any information the team of AHCS will endeavour to search the internet to provide them with answers to their questions or refer them to the appropriate Hepatitis C Council or other internet source.

Ken Abrahams from the Hep C Australasia forums gave a presentation informing the 'audience' that forums are important because people with HCV find information and talk about:

• Making transitions and decisions about the future.
• social acceptance, making friends.
• exchanging information.
• Support during difficult times and also celebrations.
• People with HCV need support from other people with HCV treatment experiences.

The presenters used 'case studies' of people with HCV, all of them were about people that had been injecting drug users (IDU), how they coped with living with HCV, disclosure, family, friends, and discrimination.
I was disappointed that there were no case studies of anyone that had acquired the HCV virus from transfusions, violence, tattoos, surgery, transplants or any medical procedures etc to hear of their experience as being 'labelled' as an injecting drug user (IDU) with HCV.

I am aware that most people with HCV became infected through drug use, and this is the reason that they are the ones most focused upon.  In a conversation with a Clinical Nurse at the conference, she expressed her concern that 'violence/fighting' was not more focused upon as being a mode of transmission.

It was also brought to my attention that patients with HCV that commence treatment may be able to access priority housing with the South Australian Housing Trust and this could take up to 6 weeks, which is remarkable considering there may at least be a 12-20 year waiting list depending on which category you fall into.

Schering Plough are providing retreatment options for people with HCV which many patients that have been non-responders or relapsers may now consider and should pursue this with their specialists. This retreatment will be available on the PBS and listed on 1st December 2008. New Ribavirin 1400mg/day will also be available from 1st December 2008.

Proven Predictability

At 12 weeks, the proven predictability of Pegatron will allow the Doctor and the patient to make the right decision whether to continue treatment.

• 37% of all patients treated with Pegatron achieved undetectable HCV-RNA livels at 12 weeks.
• 57% of all patients with undetectable HCV-RNA levels at 12 weeks went on to achieve SVR. For patients with >2log, decline, yet detectable HCV-RNA levels at week 12, the rate of SVR was only 6% and was 0% for patients with <2log, decline.

To achieve the likelihood of success, identifying the right HCV patients for retreatment with Pegatron the following should be taken into consideration:

• Low degree of fibrosis
• Low baseline viral load
• Relapsers
• Genotype 2/3
• Non-pegylated interferon failures

Prior relapsers show a much higher chance of SVR, pateints with low baseline viral load respond better than high viral load patients, higher SVR were observed in patients with lower fibrosis scores and Genotype 2/3 patients responded better than genotype 1 patients.


Charles Gore - President of the World Hepatitis Alliance gave a presentation on his endevour to have May 19th recognised as World Hepatitis Day.  Mr Gore is also involved with the Hepatitis C Trust, London, UK in which he spends a lot of time raising awareness of HCV in the political sector and around the world where he is trying to bring chronic viral hepatitis into the same priority as malaria,TB and HIV/AIDS.
Mr Gore believes 'patients' should run or lead World Hepatitis Day as he believes that Governments will listen to them first.

There is a book to be published in March 2009 called "Hepatitis C: An Expanding Perspective".

Edited by Greg Dore, Meredith Temple-Smith and Andrew Lloyd "... which will be essential reading for anyone working in the area of HCV.  "...In the last 5 years, the number of Australians living with hepatitis C has almost doubled.
Research in recent years has resulted in major developments, not only in the management and treatment of HCV, but also in our understanding of the issues involved in preventing the transmission of HCV.  As more information has become available about this epidemic, policy responses have also been modified...."
Greg Dore, Associate Professor and Head, Viral Hepatitis Clinical Research Program, National Centre in HIV Epidemiology and Clinical Research, University of NSW.
Go to www.ipcommunications.com.au to view more details of the book.


Brian Edlin (Professor of Medicine) discussed 'The Elephant in the Living Room'.

• There are 10-30% per year of IDU excluded from treatment.
• Homeless and underpriveleged are not diagnosed nor treated.
• Drug users dont seek medical help or see doctors.
• It is not ethical to withold treatment from current IDU and the National Institute of Health (NIH) recommends changes.
• Methodone is not a contraindication to hepatitis C treatment.
• Physicians dont know enough about hepatitis C to treat HCV patients.
• Drug and alcohol dependence should be treated.

Helen Blacklaws (Clinical Nurse), Interferon and ribavirin therapy for chronic hepatitis C: Family Impact Study.
The outcomes were:  

• Support from family and friends was very important.
• Anger and irritability, and always apologising.
• Hard on the family but understood.
• The patient experiences 'Loss of role', self image, and no normality in life.
• Financial - loss of money, couldnt work
• Witnessing families distress
• Secrecy, rejection, stigma, discrimination.
• Brought the families closer together and their resilience and coping was remarkable.
• There are negatives and positives for the patients and their families.
• Isolation

Pre-treatment education should be more focused and coping strategies further explored in order to better prepare patients and families for their forthcoming experience.


Max Hopwood (National Centre in HIV Social Science) is doing a new study called: Post-treatment
outcomes study: psychosocial impacts following completion of hepatitis C treatment - ongoing.

There needs to be a program for the end of treatment where patients can seek advice, referrals and support for re-orientation to work etc.
Interview participants reported a variety of sustained physical and psychological after-effects from treatment for HCV.  some after-effects were described as severe and debilitating, had persisted many months following treatment completion and impacted substantially on quality of life.
This paper:

• provides social-contextual information in relation to the impact of persistant neurotoxicity on risk practices for re-infection with HCV.  
• explores the impact of SVR (ie:cure) and treatment failure, e.g., on employment, personal relationships and emotional and social functioning;
• describes individual perceptions of improvement or deterioration in health and quality of life after treatment.

Carla Treloar (National Centre in HIV Social research, University NSW, Centre for Womens studies & Gender research, School of Political and Social Inquiry, Monash University, discussed Hepatitis C treatment in pharmacotherapy services: increasing treatment uptake needs a critical review.

In Australia there are 2,000 - 3,000 people treated each year for HCV and this needs to be 6,000.
To attract the IDU patients planning is underway for non-specialist services such as Opiate Maintenance Therapy (OPT) Clinics.

One way to increase HCV treatment access and uptake may be to provide this treatment through existing Alcohol and other Drug Services (AOD).
Many people with HCV are treated different and experience discrimination from Doctors, Nurses, Hospitals and Health Care Workers which may be a barrier to HCV treatment. (L. Brener et al 2007).

"...HCV patients are treated differently by Health Care Workers, and the attitude of health care workers has an impact on treatment outcomes in AOD treatment facilities. - is this the perception that people with HCV have or does it happen?..."


Magdalena Harris (National Centre in HIV Social Research: Safe to Drink? - Alcohol and Hepatitis C Study.

• Patients with HCV find it hard to stop drinking due to social pressure.

• They think if ALT levels are normal, then its OK to drink.

• Some may also become 'closet' drinkers from pressure not to drink.

"...There is a need for those working in the hepatitis C field to be mindful of the meaning and function that alcohol has for people with hepatitis C and, if possible, provide information on less harmful alternatives..."
Some patients have been advised to smoke cannabis to relieve the symptoms of HCV and treatment.


N Leembruggen et al - Is reduction of hazardous alcohol intake maintained post therapy in hepatitis C patients?

"...Excessive alcohol consumption exacerbates liver disease in patients with hepatitis C and decreases response to pegylated interferon and ribavirin therapy.
People with HCV tend to decrease alcohol intake rapidly in preparation for treatment and maintain this during therapy.  However, there is a cohort of patients who resume risky drinking habits post therapy and may be at an increased risk of cirrhosis, hepatocellular carcinoma and liver failure.  Further research in a long-term alcohol intake and risk factors for relapse is recommended...."


MW Douglas et al: Hepatitis C virus core protein affects insulin signalling in a genotype-specific manner.

....."We have shown that chronic infection with the hepatitis C virus, particularly genotype 1 infection, is specifically associated with insulin resistance.  More importantly in HCV-infected patients, insulin resistance predicts faster progression to cirrhosis and hepatocellular carcinoma, and predicts a poor response to antiviral therapy.  The mechanisms for the development of insulin resistance in HCV infection are unclear, though this information is vital to better understand disease pathogenesis and progression and to devise novel therapies.."
(M Douglas et al).

The future direction is to test drugs to reduce insuling resistance so that treatment works.

I would encourage everyone infected with HCV to be tested for Insulin Resistance, especially before commencing treatment to enable your chances of SVR to be in the higher odds category.  Eating a healthy diet and exercising, no smoking tobacco or drinking alcohol will improve your chances of SVR. (L. McInnes).

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Comments (16)

Two Cents

Thank you for posting this information...I am disappointed that focus seems to be on IDU..sorry but there are alot of folks who have hep c due to other reasons and IMO if the focus stays on IDU then how can we clear this stigma? All folks knowledge today seems to be drug users get it.. and this paranoia of being spat on by someone who has hep c.. how can we eliminate these fascicle notions if Hepatitis conferences and forums do not focus on the broad spectrum of the disease?

My two cents.

Oz , November 15, 2008

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plus two

Would have to agree with Oz....there's not much said about people contracting hep C who aren't IDU. The stigma is definitely still there, as a person who has had this for over 18yrs I have witnessed it both personally and professionally. The focus of these conferences need to cover a broader spectrum not just for IDU....there are a few of us out there that have never used!

pme , November 15, 2008

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'Explanation'

The reason that IDU is more focused upon is because they are the ones 'these days' that are still being infected.
They have controlled the transfusion issues, and medical procedure issues with 'safe practices' and 'safe hygiene' and 'blood screening' so that no one can become infected anymore in those areas.
There is the 'blood rule' in 'contact sports' where the player is sent off or the game is stopped etc etc.

Only educating the 'public' will the stigma stop. This is where the Media should be doing their job and helping. Unfortunately they dont see it that way.

Linda McInnes , November 15, 2008 | url

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THIS WILL BITE THEM ON THEIR BUTTS LATER !!!!

I agree with you all. Our HEP C Council should advocate on behalf of Transfused Hep C victims . We have asked them to do this , and basically say that Transfused victims have to be addressed , that they have some seperate issues to I.D.U.'s and can they advocate for us based on these seperate issues , BUT The Hep C Council like to lump the Mum's and Bubs infected in the same group as the Injectors.
It has been a pathetic stance and is an example of Political Correctness gone MAD . They are worried about funding and treading on the wrong toes . Not really that nice a mob . Linda ,Your Info was tops , keep up the great work. I have got to set you straight though .... unless the Safety Recomendations that came out of The Senate Enqy into Hepatitis C and the Australian Blood Supply( June 2004 ), are implemented undiluted and as unanimously agreed upon in 2004 , then WE ARE NOT OUT OF TROUBLE .
The Blood Supply could be safer. This is a fact!!! Five years have passed and these recommendations have STILL not been implemented. That is why we need a Royal Commission or Full JUDICIAL Enqy . These were important safety issues and they were all supposed to be implemented as a matter of PRIORITY.
Our Blood Service has a lot to hide along with C.S.L. IF OUR BLOOD SERVICE AND OUR GOVERNMENT CARED ABOUT ITS PEOPLE , THIS WOULD HAVE BEEN FIXED AND TRANSFUSED VICTIMS WOULD HAVE BEEN HELPED . THEIR POLICY IS DUCK AND WEAVE AND PRETEND IT'S BEEN SORTED . dissapointing ,GOD HELP US ALL.

Mick Pollack , August 31, 2009

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Hi Mick

I have noticed that you comment quite a lot on the blood banks etc, can gou supply any links to any information regarding the safety recommendations. When you say 'WE', is there a group of 'transfused hep c people' that have contacted the government or the hep c councils?

In defence of the Hep C Councils I would just like to say that they do a lot of good work in different areas, things would be worse without them. And they are a good source for people with HCV to contact and find out information about the virus and treatment, plus their support groups.

I can understand that you and many other people are angry that they have to live with the discrimination and stigma attached to HCV and drug use, if more people would just speak up and stop hiding, then it might be a different story.

Linda

LindaM , August 31, 2009

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Some Victims too sick!!!!!!

Yes , Linda.
The Red Cross and C/S.L payed expert witnesses and put them up in the best Motels . We had no money and did what we could .Senator Hutchins was replaced at the 11th hour by Sen Jan Mclucas. Sen McLucas had already voted NO to compensating Transfused Victims . The Senate Enqy was a foregone conclusion it would seem . I have been trying to get more people to do more for themselves but the victims of this tragedy are getting sicker and sicker . THIS IS WHAT THE BLOOD SERVICE WANTED !!!!. OUR BLOOD SERVICE WANTED VICTIMS TO GO AWAY AND DIE WITH LITTLE FUSS. IT'S WORKING TOO . . Linda, I have been fighting for nearly a Decade at my own expense . It has cost me everything I love and I would love some Justice . If Charles Mackenzie, &Rev Bill Crews and myself had not pushed and pushed ,we would not have come this far .You are right . Things would be worse if the Hep C council were not around , but that doesn't mean that they are doing a good job . Their stance not to support Transfused Victims and Advocate on their behalf is piss weak ,and shows that they care more about funding than people .They are scared to upset the Status Quo. Imagine this . You are a lady with a family . You have contracted Hep C by means of Transfusion . So you think Ok I'll take a look at the Magazine that the Hep C council puts out and see if I can find out more .I open the Mag and I read I.D.U'S and safe injecting . Then you realise ,this is not me ,I don't inject . Transfused Victims are turned off within the first 3 seconds of looking indside that Magazine . Ok so now you are a young man or woman with a young family . When you were born you needed a Transfusion and now you are in your late 20's early 3o's you are getting sick . You pick up the Hep C review and UH, OH it's all about safe INJECTING and Needle Exchange . BUT hang on I got it through a Bad Blood Transfusion . DON'T U SEE. Transfused Victims need better than a magazine ADVOCATING SAFE I.D.U. The Hep C council know this and refuse to help Transfused Victims . The Gov are the same and Our Blood Service lets people suffer and die with no help at all
Humanitarians my ARSE . Its gotten to the point now ,where nobody cares who's liable . Victims just want help . Of course if they wait long enough there won't be many left.Linda , believe me when I say I have done more than my share when it comes to exposing this tragedy and trying to get victims some real help . .If the Hep C Council were serious about advocatimg for Hep C victims , they would have made a HUGE CASE for Transfused Victims . .Hep C Council does HALF the job they are supposed to .If you are interested the link to Australias Senate Enqy is www.aph.gov.au/Senate/committe...ndex/.html Read it and see how your Govt betrayed you.
Check out the Statement Dr Moseley gave . He advised our Blood Service in 1978 what was about to unfold . They ignored him though and put Money before Safety and here we are . Linda don't protect the Hep C Council , make them do their bloody job . (all of it )God knows they have had enough time and money .I have an order from the Director General American Red Cross Blood Service which states . All Blood Services should prepare to test ALL UNITS . It is dated JANUARY 1978. If the Blood Service could trade in Blood Globally in 1978
then obviously they would have known about this request from the Director General . Couple that with Prof Moseleys evidence ,it doesn't leave too much to the imagination .
PROFIT BEFORE SAFETY WAS THE MOTTO AT THE A.R.C.B.S. MORE THAN 5 YRS ON & STILL NO AWARENESS CAMPAIGN .8756 INFECTED RECIPIENTS STILL NOT NOTIFIED . NATIONAL HEAMO VIGILANCE SYSTEM STILL NOT UP AND RUNNING . U can look at the U.K'S enqy also archercbbp.com and check Australias lonely stance . Australia will duck and weave til there is nobody left alive to fight . 3to 400 people have been compensated in return for secrecy clauses . Ther is easily enough evidence now for a FULL JUDICIAL ENQY or ROYAL COMMISSION but as you can see in the U'K they had to get their Enqy privately funded. This resulted in a call for compo and was not opposed by the opposition . The same would happen here if the Enqy was not so lobsided. Australian Victims will die waiting for help . Julia Gillard was a Senior partner in the Law Firm that settled these compo claims for secrecy and she would know all about it . Kevin Rudd was elected and he stated that he wanted to rule with Compassion and Distinction .That must not have been true because he has had plenty of time to change the attitude of the A.R.C.B.S and the Government and he has done zip .Sir Laurence Street wrote me a letter congratulating me and telling me not to give up . HE WAS THE ARCBS'S MEDIATOR AND HE WAS NOT SATISFIED WITH THEIR BEHAVIOUR.
YOU BE THE JUDGE .
Mick Pollack

Mick Pollack , September 04, 2009

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The Reasonwhy

YES ,I COMMENT ON OUR BLOOD SERVICE ALOT BECAUSE EVEN THOUGH THEY DO NOT ACCEPT LIABILITY. DON'T EVER FORGET . People were infected because of the decisions made by the Red Cross Blood Service. They know it ,we know it &the Govt know it .OUR BLOOD SERVICE IS NOTHING MORE THAN A SHOPFRONT FOR C.S.L. I know that when they have a Blood Drive it's not for Aussies . IT IS SOLELY FOR C.S.L TO SATISFY O'SEAS CONTRACTS . THIS IS A FACT!!
Between the Fed Enqy and the Senates Enqy, The T.G.A Raided C.S.L'S FRACTIONATION FACILITY AND FOUND 5 BREACHES IN SAFETY IN 3 MONTHS . THAT EQUATES TO 20 BREACHES A YEAR !! ARE YOU O.K WITH THAT FIGURE GUYS? THE BLOOD SERVICE HAS LIED ON SO MANY OCCASIONS THEY ARE NOW IMPOSSIBLE TO BELIEVE. A FULL JUDICIAL ENQY IS NEEDED TO RESTORE FAITH IN AUSTRALIAS BLOOD SUPPLY !!!
I am sorry if I have upset you Linda this was not my intention. My intention is to tell factually what has and is happening .

Mick Pollack , September 04, 2009

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Hi Mick

The link you posted for me to look at goes to 'error 404', would you have another link?

I will reply to your post, Im just reading it carefully before I comment, plus it would be good for me to read any information that you can supply me with.

I do understand about the IDU issue with the hep c councils, I guess that those are the main sources of transmission these days and thats why they focus so much on it, but it would be nice if they covered all the areas for the readers that are not IDU.
Maybe you should write to the hep c magazines within each council yourself and see what comes of it.

Linda

LindaM , September 04, 2009

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THE LINK 2 SENATES REPORT

Linda, I can't believe you have not seen this report. The Link is www.aph.gov.au/Senate/committee/clac_ ctte/completed_inquiries/2002-04/hepc/report/index.htm or report/report.pdf instead of index hotmail.
Also I have spoken to Stuart Loveday and many other members of the heirachy. They know all about what victims want . Remember that this report was tabled June 2004. On that site you will find witnesses stmts and you can get the Hansards for each day and see what everyone said . As I said I can't believe you have not read it . This was the most the Australian story has been looked into . Do you know Charles Mackenzie of the Independent Blood Council or The Tainted Blood Product action group . He is the founder of these 2 groups and a charity. He got sick and the charity was being undermined by a guy who did not have the same agenda . The Rev Bill Crews (exodus foundation) asked me to help because I had info which noone else had and it wasn't public . I have been on the Sunday programme ,Today tonight & many News shows. Sydney Morning Herald July 1 2002. First enqy was called on 2nd july 2002. Kay patterson was sacked over it .I also did a series of stories in Tweed Sun NEWSPAPER . These stories were picked up by subsiduaries and it got all the way to bundaberg . The Red CROSS took 7 to the A.B.A and fined them 90,000 doleros. I had to write a letter in their defense. They actually thanked me after their fine cause it rated the best in every capital city. So it got to the people . My net and Phone will be gone any day now cause I am broke and I have an $1800phone bill. Hey linda where were you in 2002 or 2oo4. Everything you are doing Mackenzie already did . His group had between 700 and 1000 members I'm not sure . You should get the info he's got . He fought the Red Cross for 7 yrs and won . What he won was 86kg;s of evidence . They did not want to part with it either. There is enough evidence for a full JUDICIAL Enqy or a Royal Commission .THIS IS WHAT YOU NEED TO PUSH FOR . and PUSH TO GET HEP C COUNCIL TO ADVOCATE FOR TRANSFUSED VICTIMS AND COMPO. That is what is lacking .That is what needs to be achieved.I don't know what else to say to you. I have had enough. There is just too much GRAFT and CORRUPTION &apathy. Good luck to you all. If I can still write before they cut me off ,I will. You are doing a good job but I don't see any justice pending .None cares about dying people in our Govt .

Mick Pollack , September 07, 2009

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also

Lorraine Long from the Medical Error action Group gave evidence as well . Traidstoo. They were all there.Where were you guys ?I can't believe someone formed that organisation without talking to mackenzie . He has done more for victims than anybody else . He deserves the Order of Australia for what he has achieved. Have you seen the LOOKBACK report?. He is a writer . His website was not dissimilar to this one and members came from australia wide. If I give you his email he won't reply he's too sick. Anyway looks like you have a lot of reading to do to get up to speed BUT it's worth it to see where Australia is at . I have written to everybody with no joy GOODLUCK Linda ,I mean it .

Mick Pollack , September 07, 2009

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Hi Mick

Thanks for the information, still cant access that link. If you like you can email me at This e-mail address is being protected from spambots. You need JavaScript enabled to view it '> This e-mail address is being protected from spambots. You need JavaScript enabled to view it

In 2002 I didnt know anything about HCV and hadnt done any research. In 2004 I was on the interferon/ribavirin treatment and pretty much out of this world. It wasnt until 2005/6 that I started researching HCV and started the AHCS website/forums.

Im about to do the treatment again in November this year for 48 weeks. Dont think Im going to be much use to anyone during that time. But I will make enquiries.

I wouldnt mind printing Mr Mackenzies story on the AHCS, or your story for that matter.
Interested?

Linda

LindaM , September 07, 2009

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Linda type in Tainted Blood product action group and Independent Blood Council. These sites are closed but follow every link you can find and read everything . If you do this you will be surprised what you stumble onto . I did it and filled 2 discs. Interviews 'stories '. Doit you'll see .After the Senate Enqy I had phonecalls from 3 law firms asking me what I thought the most important evidence to come out of the Enqy was . I was stunned that they would ask me this and it goes to show you that they have been limited as to what they could get their hands on .A lot of records were destroyed both here and overseas . It doesn't just come .You have to really look hard .The cover-up is ongoing it would seem .The Archer Enqy in the U.K discovered this also. I put that link on here before .Check it out .

Mick Pollack , September 07, 2009

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Hi Mick

Yes I was just doing that search, and you are right I did come across a heap of information.
I cant believe that no one has been compensated for the mistake that the Red Cross made, imagine telling people that are HCV positive that its ok to donate blood after blood screening had been introduced. Unbelievable, what a mess.

I will read more.

Thanks.

Linda

LindaM , September 07, 2009

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regarding compo

Linda,
3 TO400 people havebeen compensated in rtn for secrecy clauses. They were compensated(a lot of em)before they really knew what they were facing and a lot of them settled for miniscule amounts. Then later , they find out that they need a liver transplant .If you had money and could fight harder than you would have gotten more. Most people don't know this fact . As I said before Julia Gillard was a senior ptnr in the Law firm ythat settled these claims . She would have become wealthy from it seeing she was a senior partner . This Law firm is paid an annual fee to manage the damage . I just wrote another letter to Kevin 07 . I asked him to explain to me why Aussie victims don't deserve compo . Linda I am actually sad that you have to endure that bloody treatment again I really hated it. I did it with absolutely no support. I wanted to take my own life at times. I don't recommend that anyone do it without support.I wish everyone undertaking treatment all the very best and a successful outcome.
Do you have a good support network. I hope you do .I understand now why you were'nt around . All charley Mackenzie and I wanted was more active people onboard. We really achieved a lot considering that we had no budget and very little help . I was the one that got the letter inviting me to donate. The same letter advised me Iwas hep c positive.My letter caused a lot of bother to the Red Cross.
At the Govt Enqy(not senate)Prof Baraclough said hundreds of those letters went out to people . I kept it for 13 yrs along with the Donor card they issued to me and thats what started it all.My story is long and depressing are u sure ya really wanna know?I'll think about it . I just wish some person in the Govt would show some BALLS when it comes to this disaster. Senator Hutchins was the man who asked the question in Parliament and got Parlimentary Privelage.
(sorry about the spelling). Without that there would have been zip . I hope Mackenzie stays around long enough to see these victims helped. That would be a good thing but sadly it may never eventuate .All we did as victims is tell the truth. O'seas the Red Cross Blood Service PAYS its Donors but Australians Altruistic nature makes us CASH COWS for Our Blood Service and naturally C.S.L. The worlds Blood Services envy the AUSTRALIAN Red Cross Blood Service because they get their product for nothing from genorous aussie donors . They then Fractionate this blood into several Blood Products and flog it o'seas for a massive profit . Check out what the head of C.S.L gets paid weely and you will not believe your eyes.When Mackenzie set up that charity, all the A.R.C.B.S had to do was run a fundraiser like Bali or Bushfires and that would have kicked it off . OH REMEMBER , they are humanitarians they reckon . If they were humanitarians then we wouldn't be asking for help. SHAME RED CROSS SHAME .Linda I actually checked that second link before I posted it and I accessed it myself so check that you got it right and in total. It works Truly. How many of you in there. Is it just you or do you have help.Linda. Write me back on my personal email and I'll talk some more. SEE YA
Mick Pollack

, September 07, 2009

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Hi Mick

I really had no idea any of this was going on at the time nor now until you brought it to my attention. I wish I was more active in the HCV world back in 2002 to help you all with this issue.
I will email you.
I have a good support network set up around me now, unlike in 2004 when I did it alone. I am more informed now and know what I need to do when I go on treatment.
Im not looking forward to it, I am still having post treatment problems from the last bout of treatment, mainly memory/concentration and retaining information. Oh well, I need to give it another go, not getting any younger.

Its good that you are leaving comments to articles that are submitted on the website, how else are people going to know what happened if you dont tell them or us.

If you want to write your story, go ahead, its a story that needs to be told by a victim such as yourself.

Linda

LindaM , September 07, 2009

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Have the Transfusion issues REALLY been resolved???

Linda,
Could you please let the others on this site know the truth. If you have read the Recommendations from Senate enqy , then you must now realise that these Transfusion issues have still not been addressed .
More than 5 yrs POST Senate Enqy and Safety is still put on the backburner at the Australian Red Cross Blood Service.
TRULY SHAMEFUL.

Mick Pollack , September 09, 2009

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