MAY MAKE IT HEPATITIS MONTH!! SUPPORT BILL C-508
Shortly after finding out I had hepatitis B and C, I heard about May being International Hepatitis Awareness Month. It seemed like a good idea and an easy one to bring about—simply talk with the Federal Health Minister. I was wrong.
I raised the issue at a meeting we had with Mr. Dingwall, and followed up with letters, only to be told a national organisation had to request it, in order for it to be done.
Before I could get into a debate on it, Dave was unemployed and Rock was Health Minister. In one of his letters to me, he said that it had to be a private member’s bill. So I got nowhere there.
Finally I met with Peter Stoffer, our NDP MP. On May 5 Peter introduced Bill C-508 calling for the official and permanent recognition of May as Hepatitis Awareness Month. The response from the members of HeCSC and the HepCAN web as well as my own mailout list was fantastic.
MP’s were contacted and came forth to offer their signatures, and by the time this is published, I hope to see the bill back through committee and into the House, awaiting debate. Once it is back in House, I will check to see what, if anything, we can do to speed it up and will advise you.
Thanks to everyone who wrote, faxed, called or e-mailed his/her MP in this matter, and a public thank you to Peter Stoffer, NDP MP from Halifax, Sackville.
Bruce Devenne
Hepatitis Nova Scotia
bdevenne@sprint.ca
Every year in BC, more than 400,000 hospital-based surgeries and treatments are performed, ensuring most patients get the care they need within a reasonable time frame. But for some people, the waits are too long.
The Ministry of Health recognises the impact wait times can have on the lives of patients and families. By increasing funding and improving access to wait list information, the Ministry is taking action on Wait Lists and has made reducing wait lists and improving health care a priority.
This web site provides information to help you understand wait times and to help you explore options to receive surgery in a more timely way. Before you consider any changes to your treatment, it is important you discuss any information you get from this web site with your family doctor or your specialist.
This web site explains wait lists and allows you to get data on wait times by surgical category, by hospital, and by physician. As more hospitals participate in the Surgical Wait List Registry, more information will be available.
To find information about wait times for your surgery or your area, please visit
Phone 1(800) 465-4911
http//www.hlth.gov.bc.ca/waitlist
"… alcohol abuse and chronic HCV infection are independent risk factors for developing cirrhosis. These two risk factors together greatly compound the odds of developing cirrhosis, especially at high levels
of alcohol use."
Howard J. Worman, M. D, Columbia University
May 16, 1999. Great News Liver biopsy of August 97 showed a Grade 3 Stage 3 - chronic active hepatitis conclusion with a "vague impression of nodularity although no definite cirrhosis - portal tracts are greatly enlarged by fibrosis with portal-portal and portal-central fibrous bridging." I was put on a one year regime of Intron A as the specialist said it was very important to try and stop the fibrous bridging. Biopsy of April 30, 1999 shows a marked decrease in the piecemeal necrosis and the fibrosis appears to be arrested at this time - conclusion of pathologist was to downgrade me to a Grade 1 Stage 2. This was very good news and I am so happy to be able to share it with you. Stay well. Darlene Nicolaas
- Any questions - you can e-mail me at
djnicol@ibm.net
"
April 28,1999 on the steps of Parliament in Ottawa
For those of you who don’t remember, Joey Haché is the 16 year old boy with hepatitis C who biked across the country last summer.
Today is April 28, 1999—one year later, and I have some questions for the government Has compensation been paid for 86-90? NO! Mr Rock has said, "Care, not cash," for the victims outside 86-90. Is there more care? NO! Have programs been set up? NO! What has the RCMP found out? What happened to my petition? I've got 5,000 more signatures! Have victims been forgotten? Well, the Federal Liberals have forgotten you. But I want victims across Canada to know that not everyone has forgotten them. Fellow victims haven’t. Opposition members haven’t.
Premier Mike Harris of Ontario has shown the leadership that PM Chrétien has failed to do. Days after the vote here in Ottawa, he said that he would do the right thing and compensate all victims of tainted blood. So, recently, has Premier Bouchard of Quebec.
Thousands of Canadians were poisoned. They were poisoned through no fault of their own. Canadians like me, a kid. Canadians who are mothers, fathers, sons, daughters, neighbors ... Canadians. Who was at fault? Who made the decisions that allowed us to be poisoned? We’ll probably never know. People lie. Documents were shredded. And a lot of politicians don’t care. Well, I care. Yes, I’m eligible for the compensation package. But thousands are not! Is that fair? I don’t think so. They were poisoned. As Toronto Mayor Mel Lastman said "I went into the hospital and came out sicker. I trusted the system." So did thousands of others. Who did we trust? The people who were elected to look after the system. Was there negligence? I think so. So do the thousands of others that were poisoned! Do the politicians care? Some do.
Every opposition party in the House of Commons bonded that day. They were unified in their belief that Canadians should be treated equally. There were no two-tier victims with them. There were victims—period. They were doing what they sworn to do. They were doing their job ... and they cared! But, as was shown one year ago today, the majority of politicians do not! They turned their backs on fellow Canadians, fellow Canadians who were poisoned, fellow Canadians who trusted in the system. There was negligence that caused me and thousands of other Canadians to become poisoned.
I told Prime Minister Chrétien and Health Minister Rock that I would be their conscience until they did the right thing and compensated all Canadians who contracted Hep C through tainted blood. Well, one year has gone by. I’m starting to think that they don’t have a conscience. Maybe they are not capable of doing the right thing. One year ago today, the Liberal Government turned its back on Canadian victims, and Health Minister Rock said the file was closed. Well it’s not. One year ago, 19% of victims were eligible for compensation. Today, thanks to Ontario and Quebec, almost 60% of tainted blood victims will get some sort of compensation.
But there is hope! I have a letter from Premier Theriault of New Brunswick, dated January 5, 1999, that states "We will continue our efforts to find the most appropriate response." I also have a letter from Premier Binns of P.E.I., dated Feb 11, 1999, and he states that "We are continuing to examine funding options." But I have a personal question, if that compensation package is so good. I have a letter here from a lawyer saying he is on the class action. In it, he suggests I might be better off outside the class. My question to Mr. Rock and the lawyers "What’s going on?"
Today is the anniversary of the day that the Federal Government turned its back on Canadians—on Canadians who trusted it. This bag contains poison. You know what’s in there? My blood. But this bag also represents the blood of poisoned Canadians across Canada. Until the Federal Government does the right thing and ensures that all victims of tainted blood get compensation, this blood is on your hands. I will return here every April 28 to remind the Liberal Government "I’m still here, and I remain your conscience."
Joey Haché
April 28,1999 on the steps of Parliament in Ottawa
PS - The bag was a saline solution filled with water and red food coloring. It also contained a few drops of Joey’s blood to represent the poisoned blood across Canada. Reporters were told this!
We have about 80 people on our contact list at present and ever growing. As of December 1998 there were 663 diagnosed people in our immediate region with HepC so you can see we have a long ways to go to getting in touch with these people. It is very hard due to the confidentiality issue. We have links with all the major databases in the area and between them and the National Office and individual referrals is where the new people come from.
Our monthly meetings are currently held the 3rd Wednesday of every month at the K-W Elks Lodge, 38 Bridgeport Rd. in Waterloo at 730 PM. We average between 12 and 20 at these meetings. Depending on what subject we are discussing or what guest speaker we are having, that is about the right number to handle.
I have several very dedicated members who attend the meetings regularly, unless their health does not permit, and then a number who attend infrequently. We encourage family participation as these people need the support at home and the family members need a better understanding of the disease and what is happening and support and encouragement.
Carolyn Caveney Tel. (519) 893-9136
BRIAN’S STORY
"THE BEGINNING"
New Support Group in the Kootenay Boundary Area
They say the "C" in Hep C stands for confusion. Boy, are "they" right. Confusion from the doctors, confusion from family members, confusion at the labs, and confusion on the World Wide Web. Since I was diagnosed in January of this year, I’ve been misinformed, misled, misdiagnosed, and even downright lied to. The only thing that seems consistent is that we (the "heppers") are all telling the same story, and we have all experienced the same things to varying degrees.
My question is WHY, if over a quarter of a million Canadians are diagnosed with this very nasty little bug, and only God knows how many more are carrying it, that there is no consistent standard of care? No consistent way of handling blood samples, or transporting them for lab testing? Procedures for following up testing vary from doctor to doctor. Some will give you the world, while others won’t give you a PCR!! We’re told that we have Hep C and that’s it. Any other information we have to get from places other than the medical community.
Do I sound mad? You’re damn right. I’m mad as h*##!! It seems that because Hep C is "slow moving," we are not supposed to worry. There wasn’t even an active support group here in the Kootenay Boundary Area. Well, there is now!! And we are growing stronger. Our next meeting is Thursday, May 27th, at 7 PM at 1159 Pine Avenue Trail, above the Lordco Auto Parts store. Come on, all you Kootenay Boundary Heppers. Let’s band together and fight this thing! Let’s get educated and support each other. "WE DON’T CARE HOW, WE CARE ABOUT NOW".
For more info you can call Pat at 364-1555, or Brian at 368-1141. Watch for future meeting notices in clinic offices and the weekly COFFEE MATE.