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 checks payable to HeCSC Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 1611 Quadra St., Victoria, BC V8W 2L5. 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 check for a donation of $2, if you can afford it. Mail to the same address as above.

I’m really annoyed at the latest trend by physicians to call the combo a cure. As we all know, this virus knows how to hide. A negative PCR (which is performed on whole blood and not liver tissue) is a great thing but it doesn’t mean that the virus isn’t present in the liver.

Recently, someone had their physician—the chairperson of the Canadian Association for the Study of Liver Disease (CASL)—fill out a handicapped disability form with the prognosis that this PCR negative person (who is on the combo) would be CURED by February of 1999 when he finished the combo. This is criminal!

First of all the CASL recommendations were supposed to slam the brakes on this kind of thing.

And second of all, will we never learn? I’m not going to forget anytime soon that I was told in 1986 that my Hep Non-A Non-B was nothing to worry about. Surely that experience would make everyone more cautious.

So- I’m attending the Medical Research Council of Canada’s HCV conference in January. I want as much research as I can get that disputes this cure nonsense before it does more harm. Lots of research is finding that you can be PCR negative in whole blood but PCR positive in liver tissue. But, I need more eyes. If anyone sees anything about this, please send it to me. And anyone that gets this kind of message on paper, I’d like a hard copy to take with me.

I will be attending the "Hepatitis C: Defining a Research Agenda for Canada" conference in Ottawa on January 15 & 16, 1999. We have managed to get an invitation for the HIV-CTN who have very kindly agreed to attend. This conference is by invitation only and we are very happy to have the support of the HIV-CTN and wish to express our sincere thanks.

Please email <hepcbc@iforward.com> or write to me at 1203 Plateau Drive, North Vancouver, BC, V7P 2J3 if you have any input for this conference and its objectives. I would love to hear from as many people as possible. More heads thinking to the same goal is a great thing.

In preparation for this conference the HepCTRG has sent letters to the drug companies doing research into HCV, asking for any updates. I’ll keep everyone posted as to our progress.

Hi Everyone

Here in Vancouver, the HCV focus group met with Jeff Potts from Health Canada. This is a report of that meeting.

A variety of groups were represented which included but were not limited to: Tim McClemont & Guy Thisdelle from HeCSC, Michele from the CLF, Tom Molnar and David Lesh from the Canadian Hemophiliac Society, Nina as a family member of someone who has HCV, several individuals infected with HCV and me (Darlene Morrow).

Jeff Potts of the newly founded Hepatitis C Research, Disease Prevention and Community-Based Program - the Hepatitis C Division - Research and Systems for Health Directorate, Health Promotion and Programs Branch, opened the meeting.

The Federal government will spend $50 million over the next 5 years in the above areas ($10 million each year). This group is only 4 weeks old and has 3 principle players- the Hepatitis C Society, the Canadian Liver Foundation and the Canadian Hemophiliac Society.

These focus group meetings (with groups & individuals infected with HCV) will be used to determine and identify the priorities of this government program. These issues include what the federal government can do to increase the quality of life for those people infected with HCV.

Each individual person with HCV was invited to speak on what they thought the priorities should be.

The primary areas of concern were the following (not necessarily listed in order of importance):

At the end of the meeting I asked what was next on the government's agenda. The details of this meeting will be presented in a report in Ottawa and they will outline the next step which will include further meetings with the HCV community. I have the email address of Jeff Potts and I’m going to ask him for his permission to post it. I think everyone can give him their feedback, not just those people that attended the meeting. In addition I asked for him to submit his report to us, so that we could prevent any misinformation. He said he would do that. As he is on the road quite a bit we will either get it next Monday or the week after. I’ll post an update when that happens.

The Vancouver Sun carried an article on November 17, 1998, about a Richmond, BC, company which markets shark cartilage, and now carries a product by the name of "Hepatico," hoped to be a cure for hepatitis C. The company, Alta Natural Herbs & Supplements, is marketing the product which it says was developed in Russia over a century ago.

An official from the company, Raymond Irvine, says that Hepatico may eliminate HCV in up to 91 per cent of those who take it. Dr. Frank Anderson from UBC was quoted as saying that there is no known herbal cure for hepatitis C.

The article goes on to comment that Greg Shafransky, Alta sales vice-president, "has had prior regulatory problems," and also states, "Alta recently hired expelled accountant Piers Vanziffle."

Mixed reports about lab results have been coming in over the HepCAN list.

For more information, see http://www.canada-stockwatch.com

There are relatively few studies that have separated out the clinical outcome of chronic hepatitis C relative to source of infection. Many studies have determined the relative incidence from different causes but not the outcome. In a French study of 6,664 patients they found that cirrhosis was significantly higher in blood transfused patients versus intravenous drug users, the difference being 23.4% verses 7.0%. This was in spite of the fact that the occurrence of cirrhosis was also dependent on duration of disease and at point of diagnosis, previously blood transfused patients had a longer course of disease. Other studies have suggested that there are significant differences in hepatitis C genotypes dependent upon the route of infection and that intravenous drug users had a higher incidence of genotypes 1a and 3, whereas transfusion related patients had a higher incidence of genotypes 1b and 2a. Other studies have tended to concur, except in Sweden, where intravenous drug users had a high incidence of type 3a, transfusion related patients had a higher incidence of type 2b. The significance is that the clinical course and outcome might well be different in the different genotypes, type 1b generally being considered the most fulminant and least likely to respond to therapy. The development of cirrhosis has been reported as significantly higher in transfusion associated hepatitis C.

Hepatitis C was very new to me when I started my work on this file, and I don't want to be one of those people that don't know what the heck you're going through. The focus groups were a real eye-opener for me. I wanted to make sure that I was continually educated and aware. The HepCAN list seemed like a good place for that.

The first phase of our outreach to people living with and affected by Hep C is complete, and I am back in Ottawa now. While we have started to sit down as a group here to discuss the outcome of each focus group session we conducted, our work pulling together the feedback and writing the summary reports is just beginning. We will be meeting in Toronto on December 16 with representatives of the three national stakeholders to discuss and validate the messages that we received on the tour. I will tell you, however, that much of the validation will be obvious when I report how consistent the messages were across the country.

I will make a summary report available to you all as soon as I can.

Having said that, I would encourage you to offer me continued comments and suggestions with regard to the government's position with the $50 million. I will only use those pieces with your express permission.

The messages we received from everyone were, for the most part, consistent across the country, and those messages will be reflected in the work we do leading up to the Treasury Board submission, and the initial program plan. It is our goal to have all of the information synthesized, the Treasury Board submission filed, and the program plan in place by April 1, 1999. Officials in government have been kept informed of our activities, and are aware of the concerns expressed by the community during our focus group sessions.

The cities we visited were: Vancouver (2 meetings, one with IDUs specifically), Whitehorse, Vernon, Calgary (2 meetings), Edmonton, Regina, Winnipeg, Thunder Bay, Sault Ste. Marie, Ottawa, Toronto (2 meetings, one with Children and Families, and one with Hemophiliacs), Hamilton, Kitchener, Montreal, Moncton, Halifax, and St. John's. Some participants did, however, identify places that we should consider visiting on a second tour (Victoria, Lethbridge, Saskatoon, Thompson, Brandon, Quebec City, Trois-Rivières, Sydney, and Charlottetown). I have shared that suggestion with my colleagues, and we will investigate the feasibility of conducting further focus groups in those areas.

Thanks a bunch. I'll be in touch.

Jeff R. Potts

Program Officer

Hepatitis C Research, Disease Prevention and Community-Based Program

Hepatitis C Division - Research and Systems for Health Directorate

Health Promotion and Programs Branch

P.L. 3104D, 1600 Scott Street, Holland Cross, Tower B, Suite 410

Ottawa, ON K1A 0K9

3M Pharmaceuticals and Vanguard Medica, Guildford, U.K, are working together to develop an analogue of the drug imiquimod, used to treat genital warts, as a potential oral treatment for liver infection caused by hepatitis C virus (HCV). Clinical studies to determine the efficacy and safety of the compound will begin soon. Early studies using oral administration of the compound have shown an increase in the levels of interferons and other cytokines.

Hemispherx Biopharma, Inc., Philadelphia, PA, is a pharmaceutical company engaged in the manufacture and development of new drug entities in the nucleic acid (NA) class for chronic viral diseases and disorders of the immune system, including hepatitis C.

Interleukin 12 Phase II and Peg Interferon/Ribavirin Clinical Trials are being conducted in the US at the VA Medical Center, Long Beach, CA. If you would like information about that trial or about the other sites which are available, please contact Carol at GLITTERS12@AOL.COM or call (562)-494-5933.

A new clinical trial will be starting early in the new year. The trial will be open to treatment naive patients—that is those patients who have not been previously treated with Interferon. This trial will consist of pegylated interferon combined with ribavirin. The cost of the drugs will be covered by Schering. Pegylated interferon is a type of sustained release interferon that is injected on a once a week basis. For more info please call Susan at (604) 876-5122.

By CHRISTY CHASE

Staff writer Whitby This Week

Friday Edition, November 27,1998

OSHAWA-

Cathie Norwick is pleased the Province is going to compensate others who've contracted hepatitis C through contaminated blood beyond a five-year period. "Whoever's going to get the money, I'm happy for them," Ms. Norwick said of the plan announced Monday by Health Minister Elizabeth Witmer. Ms. Norwick contracted the disease of the liver from contaminated blood transfusions in the 1990's, treatments for a rare blood disease that caused a heart attack and several strokes. The Province will give $10,000 to each person who got hepatitis C through the blood system before January 1986 and after July 1, 1990. The estimated 5,000 Ontario residents infected between those dates are being compensated under a $1.1 billion federal, provincial and territorial package. "We are committed to doing what is fair, equitable and compassionate to provide this much-needed support to victims as quickly as possible," Ms. Witmer said. "The time for action is now." "It's a start," Ms. Norwick said. I'm pleased that they're moving on it so quickly." But she added the $10,000 won't go very far for someone whose hepatitis C is active, unlike hers which is dormant." It's like a temporary, bandage fix," she said. " I'm lucky mine's not active but that could change." Ms. Norwick, in her mid-40's, is still waiting to determine just which compensation plan she comes under. She received 200 units of blood within the five-year period and more than 200 units outside the time frame. "I'm not counting my $10,000 until I have a cheque in my hands," she added. While she's waiting for information on where she fits, she'll also be waiting for information on whether Ontario residents who accept the $10,000 will be required to give up their right to sue. "If anybody wants to sue, I don't see how anybody else can say 'No, you can't,'" she said. The $10,000 being provided by the Province is based on the same share Ontario is providing for the 1986 to 1990 program and will be reviewed when the 1986-1990 people receive their assistance. Ontario, Quebec and British Columbia, unhappy with compensation limited to that period, urged the deal be reopened but were not successful. Ontario is now going ahead with compensating its residents who fall outside that time period." Hopefully the other provinces will follow suit," Ms. Norwick said. Hepatitis C is an infection of the liver that can, in its most severe form, lead to liver cancer or death.

Sorry I'm so late getting back to everyone but I have been VERY busy! Since my Cycle of Conscience ended after 67 days on Aug 21, many things have happened. I presented my petition of 30,000 names to Prime Minister Chretien on Sept 21. He told me: "I'm sorry, I just don't have any more money for interest groups." He still doesn't get it: we are not an interest group, we are victims of a crime of negligence!

On Nov 23, I went down to the House of Commons to celebrate the fact that Premier Harris decided to make it official and compensate all victims of tainted blood. The night before, I faxed Health Minister Rock and asked him to meet me at 1 PM to explain to me, face to face, why he didn't want to. His office called my Dad early Monday morning and asked if we could make it at 1:45. We did. He said that "legally," the date they chose for compensation was 1986-90. He said there was "an argument" for an earlier date but 1986-90 was what the government chose and he had to stick with that. Well, that's not good enough for me; what about you?

Please go to my website (check out my pictures from the trip etc.) and log into the newsletter. We can make a big difference and TOGETHER WE CAN MAKE IT HAPPEN!!!

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).

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

TRACEBACK PROCEDURES:

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.

If you would like more information about class action/compensation, you can contact:

Tricia Plunkett Tel. (250) 479-5369