Written by Linda McInnes - Editor/Administrator of AHCS

There are fundraisers for illnesses such as:

• Breast Cancer foundation
• Epilepsy foundation
• Blind welfare Association
• Guide Dogs foundation
• Canteen for kid’s cancer foundation
• Cancer foundation
• Leukaemia foundation
• HIV/AIDS

I could go on and on here listing the different organisations that raise money to help assist people with these illnesses, I have these organisations phone me up to entice me into buying raffle tickets, or to donate money for their cause.
I have even door knocked for the Red Cross Appeal when asked by them one year to help them.

I have seen badges, ribbons and pens etc for sale at every outlet I can think of to support these types of organisations to raise money.
There are retreats for different people with illnesses to go to if they are very ill and need a break, and also the family needing a break.

I have never been approached by phone to give money to any hepatitis C fundraising organisation nor have I seen any ribbons or pens displayed in shops for purchase with proceeds going to aid for people with hepatitis C.

People with hepatitis C suffer from symptoms, they have a very low quality of life, and they are also treated with stigma and discrimination. They go on a treatment program for 24 – 48 weeks, where they suffer terrible side effects, mentally and physically. Some even lose their partners while on treatment because of the harshness of it all. There are times when the HCV person may have to leave home to stay with another relative or friend because the situation at home is too much. Some are even homeless and rely on ‘friends’ to help them, then the friendship becomes null and void because it is too much for the friends to cope with.

People with hepatitis C need a Respite Centre where they can receive ongoing support, access the facility a number of times a year to receive care and also to give the families a break before they become dysfunctional families and the relationships break down. They need to have contact with other people with hepatitis C to form friendships and gain a level of understanding from each other, to support each other and sharing information. People with hepatitis C are forced to live with this disease alone.

Hepatitis C sufferers were infected through many different modes of infection which include:

• Blood transfusions from contaminated blood prior to 1992
• Transplants
• Medical procedures where hygiene has been an issue
• Violence – fighting where blood is present from both parties and one is infected
• Sports – hence the blood rule
• Rough sex where blood is present from both partners, very low percentage
• Tattoos - reused equipment and ink
• Needles – where hygiene in certain ‘medical practices’ e.g. Nevada Clinic
• Injecting drug users that shared needles
• Snorting cocaine and sharing the apparatus e.g. straw
• Dental procedures where hygiene has been a concern
• Sharing razors/toothbrushes that have blood on them from an infected person
• Barbers that used the ‘cut-throat’ razor who didn’t sterilize the blade each time
• Nail salons which may have brought blood to the persons nail and didn’t clean the file.
• Body piercings, where hygiene was an issue and reuse of equipment
• Mother to child – during birth, less than 6%

A respite centre would need to have the following:

• Trained nurse
• A doctor available
• Carers
• Cooks
• Cleaners
• A kitchen
• Single bedrooms with bathroom facilities
• Laundry facilities
• Lounge room with television, dvd and video recorder
• A type of rumpus room for activities
• A weight training facility for exercise

The organisation would need to have fundraisers to produce the funds to pay for the respite centre to run all these facilites, doctors and carers etc.
Would anyone donate their services to this?
Where do we start to get a fundraising organisation?
What companies would sponsor this organisation?

Any opinions would be welcome in the 'post comment' section, what are your thoughts?

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Comments (11)

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There was a charity set up by the tainted blood product action group , but The Red Cross and the Government never put any money in it to help victims . The charity could not afford advertising and staff so it had to cease. aThe guy that was running it is sick now , but the bottom line was No Support from the Blood Service .

M Pollack , April 02, 2009

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Compensation was recently agreed upon by both sides of Parliament in the U.K. This means that Aussie Victims are the only ones not to receive any Compensation .

M Pollack , April 02, 2009

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M. Pollack, thanks for responding to this article.
Its pretty sad to see that HCV sufferers have to fight for help and justice, and wait years for any action.

Linda McInnes , April 04, 2009 | url

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Humanitarians??? I THINK NOT!!

The Red Cross Blood Service could have a fundraiser like they did for the Bushfire Victims or the Bali Victims but then that would draw attention to their organisation in an unwanted way . When you are trying to portray yourself as HUMANITARIANS it's just too hard to highlight your mistakes and let people know the full extent of the tragedy your organisation is responsible for. If they reall were humanitarians then why do Transfused Victims have to beg and plead for help. COVER UP IS THE NAME OF THE HUMANITARIANS GAME . What decent human being would say Transfused Victims don't deserve help or compo. Remember I said DECENT HUMAN BEING . Where are the DECENT HUMANS within that organisation. WHERE????????????????????
Pissed off.

Mick Pollack , September 04, 2009

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Told the Truth

The first thing people need to know is the facts to make an informed decision.

We can't fund raise because of the stigma associated with HCV: it is very hard. This is a fact that needs to be pushed to the Polli's.

We don't have the exposure and support at state health levels as majority of the positions in HIV and other infectious disease are for helping HIV services. I don't want to put the HIV community off but it is a fact for HCV,

Our treatment comes from Melanoma Tx; it is a chemotherapy drug. The emotional aspects of Tx and the lack of service for our Carers is not a priority.

Are trials that are being conducted considering the post Treatment period; if not why not. Some of these trial drugs are just that; they don't know the effect.

Our community are sick; if this was mainstream treatment they would be bits on Current Affairs Programs and in the paper.

Chris Lawrence , September 05, 2009

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NOT SO

The REASON WHY there is no funds raised for this is really because The Australian Red Cross Blood Service DON'T want attention drawn to THEIR mistakes . ALSO as I have explained The Hepatitis C Council don't do the job. They won't advocate for Transfused Hepatitis C victims because they don't want to upset the Apple cart. They are worried about their funding if they support these Mums & Bubs OR Blood Product recipients. More people copped this through Transfusion then Aussies are led to believe.
Australia drags it's feet when it comes to these people .MORE EMPHASIS ON TRANSFUSED VICTIMS MAY HAVE GOTTEN US THERE BUT WE'LL NEVER KNOW THANKS TO THE HEP C COUNCIL.
Just remember Chris we have had 2 Enqy's so the Pollies know full well. Ihave been on many Current Affairs shows trying to raise awareness . How about you Chris ????? or the rest of you out there . WHAT HAVE YOU DONE TO HELP YOURSELVES BESIDES BITCH AND MOAN ???
Everyone could do more I'm sure. Linda from this site does more than most but she is only one person . SERIOUSLY ASK YOURSELVES .WHAT HAVE I DONE TO DRAW ATTENTION TO THESE PEOPLES PLIGHT? WELL CHRIS?????????????? ZIP I BET . I actually hope I'm wrong !!!!

Mick Pollack , September 09, 2009

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Chris Who do you represent ?

Where do you work Chris .Tell everyone on the Forum??????????????The Hep C council isn't it????Raise some awareness then Chris.

Mick Pollack , September 09, 2009

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Discrimination by the HEP C COUNCIL.

I actualy believe Transfused victims are discriminated against by the Hep C Council.
If they don't advocate for these victims and they are the HEPATITIS C COUNCIL, then who's responsibility is it. So let me get it right . They advocate for all victims UNLESS they are Transfused right. WHIMPS !!!!!!!
DO THE WHOLE JOB OR CALL YOURSELF THE I.D.U.'s Hepatitis C Council.
what a farce they are really. I.DU'S SAFE INJECTING . Thats great fellas but what about those MUMS & BUBS suffering because of your pathetic stance.I honestly don't know how you can live with yourselves. I wonder if they would feel the same if they, or one of their family got it via Transfusion. I think NOT. What does everyone else feel?

Mick Pollack , September 09, 2009

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Mick

Chris doesnt work for the hep c council, and out of respect for privacy it would be best to address any issues within the forum itself, not on here.

Its ok to have your say or express your opinion but I believe it can be done with calmness and thoughtfulness.

See you in the forums Mick.

Linda

LindaM , September 09, 2009

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sure

Don't worry everyone sit on their hands that will get results for sure. Really Linda why is it up to you and I to motivate people. Like I said I've done my share and I'm dissapointed that 7 or 8 yrs later people are getting motivated . As you can see Theres plenty of stories been done already over the past decade . I admire what you are trying to do but Honestly. I think you all need to do a lot more research on whats already come out. Sorry everyone I guess the Red Cross trying to kill me and then pretending it's not their fault upsets me just a wee bit . IF YOU GUYS WANT TO RAISE MORE AWARENESS THEN YOU HAVE TO KICK SOME ASS. Sorry chris .The Hep C council aren't doing enough and all of you should be trying to get them into gear . By the time you figure out how to play this ,another 5 yrs wil have passed .The Red Cross are laughing at victims and the Hep C council is not much better . Good Luck. As far as telling my story . Ive gone public so many times I can't believe you havent heard it . All we as a group wanted, was people to get off their asses . It was the same half dozen people all the time even though Mackenzies group had between 700 and 1000 members .WHERE ARE YOU ALL????????Where were you all.??????????
You don't get any results by trying to stay on everyones good side . YOU Will work it out in the end, but like I said how much more time will have passed and how many more must suffer and die while you try and motivate . Really Linda you could have found all that stuff by yourself Its all been out there for 5 yrs . or longer . Good luck I'm done .I might offend someone .
I tried to help you. but really I wonder why you people rely on others to do the work .
All Victims need to pull their fingers out . Everything I did ,I did whilst minding my kids and running a house and and getting sicker,then treatment .I carried that virus for all of my adult life. 24YRS PRIOR TO TMT . .Do you think we got 2 Enqy's by treading lightly . You think I might offend someone . What a joke !!!!!Don't waste your time protecting Chris Linda I'm sure he has broad shoulders!!!!In fact I think I met him at ashfield .Everyone could have done more .What I have shown you and told you is the tip of the iceberg.
Work on getting those Senate recommendations all implemented undiluted or changed, THAT WOULD BE DOING ALL AUSTRALIANS A FAVOUR ..THEY WERE ALL SUPPOSED TO BE IMPLEMENTED URGENTLY .What a lot of shit that was . AGAIN.Trust me there are enough whimpy people involved with Hep C already . If you want results then you have to chase results with just a bit more vigour people.
.Remember you are up against a major cover-up .I AM DONE .

Mick Pollack , September 09, 2009

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Hi Mick

Its ok, I wasnt defending anyone, I just like to keep everything friendly.
I have done plenty of research, and I know I still have a lot to learn and understand.
Catching up with what has happened previous to my involvement with HCV has been a challenge and running the website and forums takes up a lot of my time. Dont forget that Im not a very healthy person neither, but Im doing the best I can.
There are people that have the fight in them and the motivation to do more than the ordinary person, you are one of them, so is Chris. He doesnt sit around and watch the world go by and let people do the fighting for him neither, he is trying to do what he can also. Wish there were more of us out there.

I am also a very individual person Mick, and I go with what I know and believe to be right, and I dont care who's toes I stand on. But I do give everything careful thought and try to approach things in a non threatening manner.

I am only too aware of what it is like to have your knuckles rapped when dipping your fingers into a territory that is 'clique' and I have been on the firing end of different scenarios and I didnt like it one bit, but it doesnt scare me off.

Be patient with people and remember that people with HCV are sick and going through their own issues and having to put up with the stigma and discrimination in their own surroundings. Its not easy for any of us.

What support do you have with your HCV, do you attend support groups, do you have counselling. How is your actual HCV health at this time. If you have joined the AHCS forums, you will find support there from all of the members, please join us.

LindaM , September 09, 2009

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