We meet usually every third Thursday of the month. Our contact person is Jackie, at (780) 939-3379.
And hey, THANK YOU for all the wonderful brochures and HepCBC bulletins. They’ll go out this Thursday at our meeting. Our meetings are INFORMAL, and are of a support group nature—not political. Our web site is
Dragon's Den and is for local HCV’ers who would like to share/talk about anything.
I usually have trouble remembering dates—anniversaries, birthdays—things like that. But April 28th is a date that I will never forget. That’s the day Jean Cretien returned from Cuba to force his liberal caucus to vote against their conscience and the expressed conscience of their constituents, to vote against opening up compensation to people with hepatitis C who were pre-1986 victims of tainted blood. This, for me, was a turning point in history. From that point on, even the illusion of Canadian democracy vanished.
Consider - the shredding of documents - the appointing of a "lawyer" as "Health" minister - the perverse notion of compensation born from the backroom discussions of government officials and lawyers, never once seeking to understand the needs of the infected and affected - the ugly spin-doctoring designed to paint all victims of tainted blood as undeserving of healthcare and the support of their country and its government - dictating votes in the House of Commons in the face of public opinion and good conscience - cost/benefit analysis with human life that is nothing more than a death sentence; the abandonment of Canadian citizens to some perverse notion of fiscal responsibility - the ongoing manipulation of money and accountability that only seems to benefit the government and the Canadian Red Cross.
At a recent public forum, I asked a representative from Health Canada when people sick with hepatitis C might expect to see some real changes to our health care system (to aid people with the virus and to prevent others from getting it). She suggested, "Maybe by the Fall, September or October." Two years post-Krever, and we are still nowhere. Astonishing... lack of federal leadership in this country has cost us democracy and lives. They have left everyone at risk! How could we possibly do any worse.
It is important to remember that most, if not all, of the progress that the victims of tainted blood have made came from the grass roots level. I mean the local chapters and individuals who just got out there and made their voices count. The letters to editors, the demonstrations on Parliament Hill, your presence in the face of government, the cross country cycling by a teenage youth who epitomized the selfless and generous qualities of those who really have something to offer this country. When a government or an organization stops listening to its people, we all lose. We must continue to fight and insist that government and organizations that claim to represent us do so. Remember April 28th, 1998. We must attempt to elect people into leadership positions who have a keen desire to represent the people who put them there.
Bob Manser, Ottawa
The editors apologize for the cuts in this article, particularly those comments pertaining to the parallels between the Federal Government and the BOD of HeCSC.
Some of you have reported having trouble getting hospital records for your transfusions. Here are some tips from Gary Joneson and Bruce Devenne, from the HepCAN list (Thanks, guys!)
1. Go to the hospital records department and request your COMPLETE hospital record, not just blood records. They are required to keep records for 10 years. They must get them to you in 30 days. If they can't be found, check under other names, such as maiden names, hyphenated names, etc. Keep copies of everything!!
2. If the hospital says the records were destroyed, ask for written confirmation as to the date they were destroyed and why.
3. Make a written request to every doctor you have seen in the last 15 years for any blood work records that may be available and any follow-up to treatment they may have recorded. Doctors are required to keep records for only 7 years in BC, but some keep them for a long time.
4. The Red Cross supposedly has a record of EVERY transfusion (on microfiche) that has taken place in BC since 1981. If the person has a date when the operation took place, s/he should also make a written request to the Red Cross (or as they now call it, the CBS). One must be very firm and determined when searching for these records, as there does seem to be some reluctance to look very hard. Keep copies of all requests.
5. Check at the local blood bank that supplies the hospital in question. They should have records.
6. Last resorts
· Ask your doctor to request them.
· Tell your local Hep C Chapter
· Call the Office of the Information and Privacy Commissioner, (250) 387-5629, tell them you have done the above, and ask for an investigation since you have been refused your complete records.
· Go to the press with any proof you have.
· Go for your records accompanied by the RCMP.
BRITISH COLUMBIA
Camp Church and Associates
Sharon Matthews / Kim Graham
4th Floor, Randall Building
Vancouver, BC V6B 1Z5
1-(888)-236-7797
Grant Kovacs Norell
Bruce Lemer
Grosvenor Building
930-1040 West Georgia Street
Vancouver, BC, V6E 4H1
Phone (604) 609-6699 Fax (604) 609-6688
Before August 1, 1986
Klein Lyons
David A Klein
805 West Broadway, Suite 500
Vancouver, BC V5Z 1K1
(604) 874-7171 or 1-(800) 468-4466
(604) 874-7180 (FAX)
also
Dempster, Dermody, Riley and Buntain
William Dermody
4 Hughson Street South, 2nd Floor
Hamilton, Ontario L8N 3Z1
(905) 572- 6688
The toll free number to get you in touch with the Hepatitis C Counsel is 1-(800)-229-LEAD (5323).
ONTARIO AND OTHER PROVINCES
Pre 1986/post 1990
Mr. David Harvey
Goodman & Carr
200 King Street West
Suite 2300
Toronto, Ontario, M5H 3W5
Phone (416) 595-2300
Fax (416) 595-0527
CLASS ACTION FOR CHILDREN
Poyner Baxter Blaxland
Jim Poyner or Ken Baxter
Tel. (604) 988-6321
Fax (604) 988-3632
poyner.baxter@bc.sympatico.ca
or
Siskind, Cromarty, Ivey and Dowler
Michael Eiazenga
Tel. (519)672- 2121 Local 332
Tel. 1-(800) 461-6166
TRACEBACK PROCEDURES
INQUIRIES-CONTACT
The Canadian Red Cross Society
4750 Oak Street
Vancouver, BC, V6H 2N9
1-(888) 332-5663 (local 207)
This information is for anyone who has received blood transfusions in Canada, if they wish to find out if their donors were Hep C positive.
CLASS ACTION/COMPENSATION
If you would like more information about class action/compensation, you can contact
Ron Thiel Tel. (250) 652-0608
E-mail thielron@pacificcoast.net
National Compensation Hotline
Tel. 1-(888) 780-1111
MEETING TIMES AND LOCATION
We still have not been able to find new meeting facilities, so we are limping along in hopes of finding a suitable location for a fresh start in the early fall. In the meantime call (613) 233-9703 for the time and location of summer meetings.
We are planning a summer barbecue and social evening for late July or early August. It will be held in a local park in early evening, hopefully before the mosquitoes come out. This would be a good time to meet members of the Ottawa group outside the trappings of a more formal meeting. Expect an announcement in the next newsletter.
DO WE REALLY NEED A NATIONAL SOCIETY?
Over the last couple of years the question of the need of a national association has repeatedly come up. "Why can’t we go it alone?" or "What has Toronto done for us except interfere and take a lion’s share of our dues?" or, heard most often, "We help organise rallies and supply bodies for protest demonstrations on Parliament Hill, and Toronto not only does not thank us, but hardly ever answers our mail or requests for information." These are very legitimate questions, reflecting a high level of frustration. Many get the impression that the National Office is a Toronto centred one-man band, throwing crumbs to the hinterland on occasion. Strong opinions, but someone has to say it the way it is perceived by many.
On the other hand, sober discussion and thought concludes that, yes, we do need a body to co-ordinate our efforts directed at the federal level, and provide a united national voice for our plight and our message. But what kind of organisation should that be, and what role should it fulfil? This, naturally enough, leads to the areas of responsibility of both a national office and local chapters.
With a responsive and astute central office and chairperson in support, we concluded that issues of a "personal and helping" nature are best left to local chapters. These activities would include support groups, liaising with local governments, counselling of a firsthand nature, community public relations, information dissemination and contact with regional media people.
As for a national office, it is easier, first, to describe what it should not be. It should not be dominated by any one person directing a mostly compliant Board of Directors. It should not have any past or present ties to any political party, perceived or real, nor be wary of ruffling the feathers of people in high places. A national organisation, such as the Hepatitis C Society of Canada, is ESSENTIAL to co-ordinating our efforts, such as promoting public awareness about the dangers and scope of hepatitis C, pressuring public officials for recognition of the health and social problems facing ALL hepatitis C sufferers, and seeking social and criminal justice.
Our local discussions led us to believe that a national organisation must be responsive to local chapters through a dedicated and proactive Board of Directors consisting of independent thinkers, not owing loyalty through friendship or favour to anyone but the members they represent. An organised National Office would pull together national advocacy efforts, political action, legal issues, fund raising, country-wide publicity and awareness programs, and act as liaison with the media on national and international matters touching on hepatitis C. A key role for a central effort would be the active aid and support of regional groups.
Yes, we desperately do need a national body to speak for us—but a true NATIONAL organisation. There have been widespread complaints about the national office of the Hepatitis C Society, many justified. However, we here in Ottawa realise that without the efforts of the Society, no matter how unresponsive, secretive and autocratic the stewardship seems to many people, much of the modest progress made to date on political, compensation and legal fronts may not have happened without this central effort. Much remains to be done, but let’s not throw out the baby with the bath water by denigrating the idea of the Society as a whole. With an open, responsive, collective and accountable leadership, we can do many things we cannot do working in isolation.
OTTAWA HEP-C "HOTLINE"
The Ottawa Chapter "Hot Line" is proving quite popular. Perhaps it is too pretentious to call it a "Hot Line" because we do not have enough volunteers to answer it on anything resembling a full-time basis, so most callers leave a message. We do try to get back to them as soon as possible, however. We have been averaging close to 100 messages a month, and many of them are first time callers who discovered our number in the phone book. It is gratifying that we can offer help to people who feel they have no place to turn when faced with the devastating news that they have been diagnosed with hepatitis C. In some ways it is one of the most valuable services we provide, considering public information is so scanty from both governments and the medical community. If you, or anyone you know, has questions regarding Hep C, please feel free to call our line at (613) 233-9703.
HEPATITIS C COUNSELLING
Individual counselling is provided at our office at 116 Nepean Street, Room 221, on Monday afternoons by appointment. Jo-Anne Manser has recently completed an extensive course on counselling and will be spelling Sue Rainville off on alternative weeks for the next few months. If anyone has a hepatitis C related problem they wish to discuss in private, please call our line at (613) 233-9703 for a time and date.
PUBLIC PRESENTATIONS
Over the past year the Ottawa Chapter has developed a slide presentation on hepatitis C that we have presented to several groups. This information session takes about thirty minutes and is followed by a question and answer period. We have tried to keep the "show" simple and straightforward, providing general Hep C information as to cause, symptoms, prognosis, prevention, and treatment. A deliberate effort was made to stay away from medical and technical jargon. We have also tried our best to keep politics and compensation out of the presentation.
The Ottawa Chapter offers this service to any group of more than ten interested people within a 100 Kilometre radius of Ottawa. To date we have made presentations to university classes, social clubs, health care professionals and other health groups such as ours. We see this as an important contribution to spreading our message about the perils of hepatitis C. Anyone interested in viewing this presentation is asked to call our Ottawa office.
ONTARIO COMPENSATION
Ten thousand dollar compensation cheques have been arriving in the last several weeks, from the Ontario Government, for those who contacted hepatitis C from tainted blood pre-1986. From the distribution pattern observed, priority seem to be going to those who have clear-cut cases of infection from blood transfusions, with no other sources of infection. Applications for compensation from others who may have indicated other sources of possible infection, as well as from blood products, appear to be getting closer scrutiny, although this does not mean they will be necessarily turned down. Another group that appears to be having a problem with compensation are those who had transfusions pre-1986 and also during the period covered in the proposed federal compensation package. It is possible they might have to wait for the federal payout. If you have applied for compensation you will get a phone call from a nurse in the Ontario Health Ministry who may question you extensively on the source of your infection. We advise you be co-operative and truthful. These people are only doing their job, and, for the most part, are polite and helpful. Just for the record, it appears the number of applications for compensation were considerably lower than the 10,000 expected, being closer to 7000.
TO THE HOUSE OF COMMONS IN PARLIAMENT ASSEMBLED
We, the undersigned residents of Canada, draw the attention of the House to the following
THAT, hundred of thousands of Canadians suffer from hepatitis;
THAT, increased awareness/education of hepatitis, the disease, its history and effects on the daily lives of the wounded, the sick and their loved ones, will assist in curtailing increased hepatitis cases;
THAT, the increased awareness/education of hepatitis, the disease, its history and effects on the daily lives of the wounded, the sick and their loved ones, will assist in improving the lives of many Canadians who suffer from hepatitis;
THAT, increased awareness/education of hepatitis, the disease, its history and effects on the daily lives of the wounded, the sickand their loved ones, will encourage governments to work will all involved toward bringing forward real solutions to the victims of this disease.
THEREFORE, your petitioners call upon Parliament to support Bill C-508, An Act to provide for Hepatitis Awareness Month, ensuring that throughout Canada, in each and every year, the month of May shall be known under the name of "HEPATITIS AWARENESS MONTH."
Signatures Addresses
(Sign your own name. Do not print.) (Give your full home address or your city and province.)
1
2
3
4
5
6
7
8
9
10
Please return to Peter Stoffer, M.P. c/o House of Commons Ottawa, ON K1A 0A6 (postage free)