HEP C QUILTS SIDE BY SIDE AT LAST!!
We are expecting to have the privilege of the presence of both the Canadian and the US Hepatitis C Quilts at our HepFest in July. The Canadian quilt was put together originally by Leslie Gibbenhuck and is being shipped by HeCSC, head office. The American quilt has been assembled by Marie Stern, and its travel expenses are sponsored by Schering.
This will be an historical event. We hope that all of you will make squares to send back with the quilts.
Quilt squares need to be exactly 12" x 12". This includes the margins. Use red or yellow cotton cloth, but if you want to use a different material, that's okay too. It's just easier to sew on the cotton, and cheaper for everyone, too. Be creative and do what you want for your square. It makes it more personal this way. If you have absolutely no creativity then you can do your hand in the opposing colour. Write your name, date of possible inception and anything else you would like to write. You are welcome and encouraged to submit a square for each quilt.
If you would like to host a quilt-square making bee, or attend one, call 388-4311 and sign up. We have a few samples and some paint.
First Annual North West HepFest!
· A Fun Run. This year marks the second "Run for Life," a 5 km walk, jog, run event to be held at Lochside Park (Saanich) on July 18th at 9am.
· A Raffle. We hope to raise funds to continue the work here in Victoria—the hepc.bull, our pamphlet series, the FAQs, etc. Some of the items we hope to raffle off are a car, computer equipment, and anything you might want to bring along—and no, Joan, squeeky is not up for grabs.
· Speakers. We shall be having a Transplant Forum, on the morning of the 17th with Ed Conroy, and Uncle Dave and the Prankster from down South, and an explanation of the recent Quality of Life Survey by Dr. Bob Hogg of St Paul’s of Vancouver in the afternoon. We have also invited Leslie Gibbenhuck and her son Jarad, who will be having his birthday at the same time, and Steve Graham from the HEP project in Seattle. We hope as well to have some politicians, and maybe we will have a Rally at the Provincial Legislature.
· Music, Food & Fun. Bring your instruments, bring your friends and bring some food.
The Hepatitis Strategy for BC, Part II
Report by Darlene Morrow
This is the continuation of an article which appeared in last month’s hepc.bull
Obstacles ? The Players
The patient and community, the Ministry of Health both acute and prevention, St Paul's HIV, VHHSC (Vancouver Hospital Health Sciences Center), V/RHB (Vancouver/ Richmond Health Board), CHS, BCCDC (BC Center for Disease Control) Surveillance, CBS (Canadian Blood Supply), Pharmacare, Federal Surveillance, St. Paul’s Lab, UBC Teaching, BCCDC Lab, Viridae, PHO, Other Regional Boards
Service Delivery Models
-vertical – integration (centralized or provincial coordination-what and why)
-horizontal - regional
Operational Models Will Include
-government
-hospitals
-communities
-etc.
INSTITUTES - PHYSICAL BUILDINGS
Advantages Disadvantages
-critical mass -loss of autonomy
-shared expertise -bureaucracy
-pooled resources -assignment of credit
-intellectual stimulation -development of indi-
-multi disciplinary vidual reputations
-institutional -exclusion of non
groups
Virtual Networks
-do not need mortar and bricks
-use existing expertise and infrastructure
-develop and evolve
We can use the flow of information to map the network. We must have a mandate and resources for a virtual network. This includes an executive which must involve the community and control and manage information. The next steps are funded by the Vancouver Richmond Health Board. We need interim guidelines and an interim executive to assess existing resources and submit a comprehensive proposal.
Project success or failure depends upon
-senior leaders must launch and delegate
-project champion must be committed, understood and be trusted
-there must be tension for change
-solution development is external
-project has to be properly explored at all levels
-funding
-there must be flexibility in the technology as well as flexibility politically
-small pilots can collect honest reactions from people.
5 Steps
1. Brokered, lead and supported
2. Proposal-coalition of what we have and where we want to go
3. Network-balance, coordination and autonomy
4. The process should be information flow based (people, database linkages and innovative)
-communication is of the utmost importance
-clinical care-phase-registry to full electronic record
-surveillance
5. Interim guidelines are critical-showcased the process.
The overall message here is that we, as members of the hepatitis C community, must get involved. We must write letters to the politicians, and lobby governments to provide funding for these initiatives to occur. We are the driving force and as such we must be organized and speak with clear voice. Get involved NOW. The executive committee is already looking for community members to sit on various working groups. Please give us your name and number. WE need representation on all levels. If we do not meet this criteria, we cannot complain about the finished result. You can contact me at (604)987-7378 or by email at hepcbc@home.com
" There is a correlation between HCV RNA levels and amount of alcohol
consumed."
E.R. Schiff, Magazine Hepatitis Weekly; June 23, 1997
RECIPES, PLEASE
Want to be in print?
We are trying to compile a cook book of quick, easy, low fat, nutritional recipes, preferably original, to raise funds for the Victoria chapter. Please submit your recipes, and your brief story, if you’d like, to Joan at (250) 595-3882.
Victoria Members
Not getting phone messages each month?
We may not have your correct phone number on our database. Please call us at 388-4311, and leave your name and number.
Think You Can’t Afford Rebetron?
C.A.R.E., The Canadian Advisory Reimbursement Exchange is the reimbursement assistance number for patients who were prescribed Rebetron. There is a very easy to read booklet available. The new dedicated line is 1-800-603-2754 extension 2121. The people at C.A.R.E. are fully bilingual and available from 1000 AM to 600 PM Monday to Friday Eastern Standard Time. After hours, patients can leave their name and number, and a medical professional will call them back the next day.
Everything is always confidential!
Concerns like these will be answered
· I don’t know who is supposed to pay for my REBETRON
· I don’t think I have coverage
· I have no coverage and I can’t afford to pay for it myself
· I have insurance but I can’t afford my co-pay or deductible
· I have insurance but they won’t pay for REBETRON
· My government plan is too complicated for me to understand
· My government plan only pays for a portion of my REBETRON and I can’t afford the rest
· They tell me that my REBETRON is not covered, what do I do now?
Visit HepNet at http//www.hepnet.com
Peter Caveny
Another of our soldiers has fallen. Peter Caveny, 51, passed away on February 12 in Kitchener, after a long battle with hepatitis C which he probably contracted from blood received in the 70s and 80s. His wife, Carolyn, who runs the local support group, continues the fight for him. She and a number of siblings, nieces and nephews survive him. Memorial donations to HeCSC-Kitchener or to the Blessed Sacrament Roman Catholic Church would be appreciated as expressions of sympathy.
$$ If you like this bulletin please help us.
We Cannot continue without your support $$
By Ron Thiel
It was a bright sunny day today, but there was a cold wind blowing across the front of the Legislature. Perhaps this is nature’s way of counteracting all the hot air inside. We started arriving at 11 a.m. and ran into our first problem. Security wouldn’t co-operate because we "hadn’t gone through the protocol office." I explained that I went in person last week and filled out the necessary form, which I was told they didn’t have in their office. After a number of phone calls, we got things straightened out. We had faxed the media last week and I called them all this morning to remind them, but the television people didn’t show up, which was a pity, as we had a skit that was ideal for TV. There were a couple of photographers there, and a reporter from the Times-Colonist. Maybe Canadian Press will have something on the wire.
We had a mock-up coffin with one of our members laying inside, grasping a copy of the Canadian Bill of Rights. The Reaper, with his signs TAINTED BLOOD—THE GRIM REAPER CALLS and BON JOUR I'M COLLECTING FOR THE LIBERALS hanging round his neck, stood behind the coffin, and in his best French accent said, "We must consider the pain and suffering of the people of Kosovo, we must consider the civil rights of the people of China and we must consider the civil rights of the people of Cuba," at which point the "corpse" sat up and waved her copy of the Canadian Bill of Rights and said, "What about my pain and suffering? What about my civil rights?" to which The Reaper replied, "Shaddup. You’re just a Canadian!" and pushed the "corpse" back down in the coffin.
After this there was condemnation of the blood brokers and their bloody trade—that they were nothing more than an international Mafia, making their profits on the backs of their suffering victims. Particular emphasis was given to Continental Pharma Cryosan and their terrible record. Also condemned were government regulators who failed in their sacred duty towards their fellow human beings. Following this, a one-minute silence was held in memory of all the victims of these criminals, worldwide.
Two members of the N.D.P. government spoke to us Steve Orcherton and Ed Conroy, who himself is a victim of Hep C, and has had two liver transplants. There seems to be a slight softening of the attitude of the BC government. Murray Coell, the M.L.A. for Saanich and the Islands, said a few words. I noticed that he was wearing one of our ribbons.
We had just about finished when the wind got up and it started to shower—not a bad rally, except for the absence of much of the media, but then this is Victoria, remember. This is the city where the reporters think that a scoop is something to pick up doggie doo with!
About 35 people showed up for the Rally and I would like to thank them all for their support. Special thanks to Darlene Morrow for traveling over from Vancouver, and to those members who drove down from Nanaimo to support us. We should however be able to get more than 35 people out, given the size of our membership—and considering that squeeky wasn’t there. We are never going to win this struggle if more people aren’t prepared to stand up and be counted!
"Total lifetime alcohol consumption is a risk factor for the progression of
liver disease caused by HCV."
Dr. Paul Desmond, St. Vincent’s Hospital, Australia.
NEW HEPATITIS HANDBOOK
The new, revised edition, Hepatitis Handbook by Mathew Dolan has now been published in the USA - it covers a wide range of topics and is very informative on the subject of Hep C . It can be ordered by calling 1-800-337-2665, or through book shops. The American ISBN is 1-55643-313-1.
SISTER HCV Rally on Capitol Steps
A nation-wide rally for more awareness and research on the hepatitis C virus was held on the steps of 22 United States capitols and one Canadian provincial capitol on Monday, May 3, 1999. This effort was organised by the United States Hepatitis Alliance.
Here in Washington State, the rally was organised by Lama Kunga Palmo who also does work for the Seattle based Hepatitis Education Project.
The marchers gathered on an unusual sunny, warm morning at Sylvester Park in Olympia, Washington, at 930 AM. A much welcomed TV crew from KING News was on hand to film and interview participants. At 1015 the rally crowd of about 60 people with their signs marched, tottered and staggered the six or so blocks to the Capitol steps where informational materials on HCV and treatment were set out on tables. Protesters who could not walk were able to park in front of the steps and join us. Washington State generously provided a podium and amplification system for rally speakers.
The first speaker was Dr. Russel Alexander, an expert in the field of epidemiology, a member of the board of HEP and former director of the King County Public Health Department, who spoke to us about the Silent Epidemic.
Next was our brother HCV fighter from the Victoria Chapter of the Hepatitis C Society of Canada, David Mazoff (squeeky), who gave us an overview of the progress of the proposed look-back and compensation program in Canada. David also informed us that a sympathy rally by our Canadian brothers and sisters was being held on the steps of the British Columbia Legislature in Victoria.
Dr. William Wulsin spoke to us about alternative approaches in conjunction with traditional treatment of HCV. Transfusion free surgery to avoid transmission of disease by transfusion was the topic of Linda Howard, RN, and David Lang talked about the difficulty of obtaining SSDI for those disabled by HCV. Chaplain Terry White spoke about the astoundingly high prevalence of HCV infection among prisoners and the need for outreach. Concluding the event was Steve Graham, president of the Hepatitis Education Project, who spoke about outreach and support group networking. All speakers were available for questioning until 1200 noon, when the rally disbanded just in time for a big black cloud to blow in and rain started.
Governor Gary Locke, Attorney General Christine Gregoire, and Representatives Barlean, Benson, Ruderman, Schmidt, Edmonds, Radcliff, Delvin, Haigh and Ogden answered the plea for support from USHA for this event. USHA plans to have another rally next year, so if you missed this one, be sure to mark your calendars!
Best regards
"Uncle" Dave Lang dave77@emeraldnet.net
This column is a response to requests for a personal classified section in our news bulletin. Here is how it works
To place an ad Write it up! Max. 50 words. Deadline is the 15th of each month and the ad will run for two months. We'd like a $10 donation, if you can afford it. Send cheques payable to HeCSC Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 926 View St., Victoria, BC V8V 3L5. Give us your name, tel. no., and address.
To respond to an ad Place your written response in a separate, sealed envelope with nothing on it but the number from the top left corner of the ad to which you are responding. Put that envelope inside a second one, along with your cheque for a donation of $2, if you can afford it. Mail to the address above.
Disclaimer The hepc.bull and/or HeCSC cannot be held responsible for any interaction between parties brought about by this column.
Ad No. 10
Respectful, respectable man (49) but looks younger who is very active and loves life. I'm 6' tall, 210 lbs. and considered nice looking, emotionally and financially secure and non-symptomatic. I won't let Hep C rule my life and am looking for a positive female to share a long-term happy life together. Vancouver area.
Ad No. 11
Would like very much to begin a new friendship via letters, or in person, with an HCV positive man. I am an upbeat, kind-hearted, enthusiastic female, late 40's who delights in seaside walks and derives great pleasure in nature's endless array of offerings! A good sense of humour a definite plus. BC please.
Ad No. 12
Male, artist, musician, age 48, Hep-C pos., seeking woman who is open to the
future and believes it still holds the seeds of mystery. Preference given to fringe dwellers and musicians. Working with kids has been my chosen profession. I'm great with kids, but poison to the parental ego.