Update on the RCMP Blood Task Force
The following is from a letter to Leslie
Gibbenhuck: we ran out of space this issue, so here’s the main points:
The RCMP’s Blood Task Force Investigation remains on track and is progressing extremely well. While information about "systems and science" is still important, the Task Force is now in a position to concentrate on certain decisions taken about blood and blood product distribution in Canada between 1980 and 1990. It is important that the public understand that, while the investigation has not reached any final conclusions, interviews with key players in the Canadian blood system continue to provide the Task Force with an ever greater understanding.
On June 15th, 1999, an investigator with a medical background will join the Task Force full-time. His involvement will enhance the existing expertise and, as such, be very valuable to the investigation. Sherry Christie, our Victim’s Coordinator is now on maternity leave and is being replaced by Heather JAMEISON on June 15.
Anyone with information relating to the investigation is asked to call the TIPS line at 1-888-530-1111
From: "Group Seeks Ban of Antibiotic Trovan" by LAURAN NEERGAARD, AP Medical Writer, WASHINGTON (AP)
One hundred forty cases of serious liver damage have been reported among Trovan users since February 1998. While most recovered after stopping the antibiotic, five patients died and three required liver transplants. Trovan is an antibiotic made by Pfizer, Inc. The consumer advocacy group Public Citizen has petitioned the Food and Drug Administration to ban Trovan.
The European Union last week warned Europeans to stop taking Trovan if they experience symptoms suggesting liver damage, such as fatigue, yellowing of the skin or eyes, stomach pain with nausea or vomiting, or dark urine. Officials call the risk rare, since Trovan has been prescribed to 2.5 million people.
The FDA called the liver problems serious. The FDA often approves drugs with liver risks as long as doctors are warned to monitor patients carefully so they can stop the drug if a problem arises.
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
First Annual Northwest Hepfest:
Schedule of
Events
Friday July 16:
Arrival of visitors from out of town
Volunteers needed to billet guests.
Barbecue and Hootenanny
Featuring the unrenowned—Hepcats!
Need backyard for barbecue, and a nanny to hoot.
Come see Joan squeak her fiddle, Squeek bellow on his accordion, Ron reap in anguish,
Judith fry, and Ken cruise (naw, sing &. strum his geetar!)
Saturday July 17:
Rummage Sale
First Metropolitan United Church: 932 Balmoral Road 9:00 AM-12 Noon
Volunteers needed.
SPEAKERS
Location: Church of St John the Divine Lounge,
1611 Quadra Street
10:00 AM-12 Noon: Transplant Forum. Guests include, David Smith, Michael Bunyard (Prankster), Ed Conroy, MLA, and Sharon Barnard.
12 Noon-1:00 PM: Potluck Lunch
1:00 PM-2:00 PM: Presentation on Chinese Medicine: Focus on natural pain management.
2:00 PM-3:00 PM: Dr. Bob Hogg, St Paul's Hospital: Overview of the recently published HCV Quality of Life Survey.
Sunday, July 18:
FUN RUN
9:00 AM: 2nd Annual Run for Life, Lochside Park
Both the American and Canadian HCV Quilts will be on display. Come and see them!!
As a tribute to the death of our son and brother Anthony John French, who died at exactly 6 p.m. on September 20, 1996 at the age of 37 and one quarter years as a result of contraction of Hepatitis C from a blood transfusion contracted in 1988 when even the Government of Canada admits they had available a test which would have prevented his infection.
Adapted from Tony's Eulogy and presented to Minister of Health David Dingwall on January 18, 1997
Mr. Minister
I became involved with the Hep C cause only in the last year with the sudden death of my little brother. Tony was the best man and best company I ever had. Tony never took advantage of anyone in his life and was scrupulously honest, never mistreating in any way any living thing. He was a scratch golfer, an excellent fisherman, a devoted son and a loving brother. He never drank, never had so much as a marijuana cigarette, and had had relationships with only a handful of women.
Tony had lived with kidney disease and with thrice weekly dialysis for eighteen years. On April 14, 1988 he received a kidney transplant, which promised a healthy future, and was, in our family's case, the best of days.
But for some reason, his health never really improved after the first year or so after the transplant. Although Tony had never drank, and was meticulous in his diet and anti-rejection drug administration, he struggled with jaundice, severe joint pain, weakness and general ill health, and unending bouts of itching and ongoing fatigue. In 1994 he contracted melanoma on his back, which he had cut out in monthly operations for over a year.
In early 1995, for some reason, his physicians began doing liver tests and biopsies. Tragically, on Thanksgiving Day of 1995 they advised him that he had hepatitis C, contracted during his transplant.
When he received the gift of life with a kidney transplant, he also received a gift of death by way of transfusion.
Tony had beaten kidney disease, and had cancer cut from his body every month. He had approached all of his illnesses and everyone of his 33 surgical treatments with his approach to life—keep spirits up, fight through it, move on, and look forward to his share of good fortune.
When he called me during Thanksgiving dinner in 1994 the spirit was gone from his voice. The voice of the man who faced cancer bravely was shaking. He explained to me that there was no cure for hepatitis C, nor was there any satisfactory course of treatment. This time he was not the victim of a bad break, or statistical possibility, he was the victim of the actions and inaction of other human beings. Although he had never disappointed another person, others had very seriously let him down.
In 1996 his health got steadily worse, with severe problems and pain in his liver and gall bladder. To do his part in improving his health, he quit smoking and went on a no fat diet and lost 30 pounds from a normal frame.
An operation in September of 1996 to remove a degraded gall bladder, and a subsequent cancer test on his liver resulted in complications that led to his death, and the death of all enthusiasm in an ordinary Canadian family.
Tony spent his last months as a devoted volunteer, helping other people sick and dying with hepatitis C. His commitment to these brothers and sisters was his legacy to our family, and we carry on his commitment to this day.
Tony was buried on Terry Fox Day of 1996. He is our Terry Fox. I humbly make the same request of you, Minister, that I made to the hundreds of my fellow Maritimers at Tony's eulogy. Next September, when you hear Terry Fox's name, please also recall the heroism of my brother, Tony French, and the thousands of other Canadians who are trying to survive sicknesses caused by and associated with hepatitis C.
My colleagues are ordinary Canadians, who share only the commonality of stories like the one I just shared with you. We are activists only in our common mission of trying to make better the lives of hundreds of thousands of Canadians who share the effect of Hep C.
We deeply appreciate the caring and willingness to co-operate that you are proving by being here today. We responded completely and honestly to the Krever Commission. Our purpose in this meeting is not to apportion blame, nor to be anything but a partner with you and your colleagues in solving a major Canadian humanitarian and health crisis.
Our Society decided that we would view this meeting as the first step in a longer journey, not as an opportunity to draw attention to our cause, and not as an opportunity to make you personally an outlet for the frustrations that our members have in the government or in a system.
We promise you that we will be forthright in trying to accomplish our mission, and we pledge honesty and integrity in our dealings with you and the Canadian governments as we work together to improve the quality of life of sick Canadians.
Brian French