DISCLAIMER: Neither HeCSC nor the hepc.bull can endorse any physician, product or treatment. Any guests invited to our groups to speak, do so to add to our information only. What they say should not necessarily be considered medical advice, unless they are medical doctors. The information you receive may help you make an informed decision. Please consult with your health practitioner before considering any therapy or therapy protocol. The opinions expressed in this newsletter are not necessarily those of the organisation

THERAPEUTIC VACCINE?

Reported in the Journal of Immunology (The Journal of Immunology. 1999, 162: 1326-1327), Epimmune scientists and their collaborators identified nine HCV epitopes which were recognized by the immune cells of HCV infected patients but not by the immune cells of healthy blood donors. The epitopes were selected based on their conserved amino acid sequence and ability to activate CTL (Cytotoxic T Cell, or "Killer T Cell") responses in blood obtained from chronically infected HCV patients. These HCV epitopes, together with others previously identified by Epimmune, are being used to design a multi-specific, broadly applicable therapeutic vaccine that might elicit potent CTL immune responses in patients chronically infected with the hepatitis C virus. CTL cells are activated by binding to specific epitopes presented by infected cells or other antigen-presenting cells. When activated, CTLs multiply in number and attack the diseased cells like an army attacks its enemy, killing diseased cells.

Dear Editors:

On April 13^th, 1999, Jeremy Beaty sent out two letters to all Hepatitis C Society of Canada (HeCSC) members. One was to those who received tainted blood before January 1^st, 1986, or after June 30^th, 1990. This letter served as an assessment of the Canadian Red Cross' (CRC) offer to pay each pre-86 and post-90 victim approximately $3,000 (see page 8 in this issue).

The other letter outlined the Society's position on the January 1^st, 1986 to June 30^th, 1990 proposed compensation scheme. In a preamble to the Society's assessment, Mr. Beaty said, "Since our letter of March 3, 1999, the governments agreed to pay an additional 18 million, for a total of $1.118 billion, in exchange for the rights for the 1986 to 1990 claimants for their share of the Red Cross money."

This would lead one to believe that the HeCSC letter resulted in the addition of these funds. Not so. In a letter written to his clients, on December 18^th, 1998, J.J. Camp explained, "The settlement provisions require HCV claimants to accept the risk that a fund of $ 1.118 billion will not be sufficient in the fullness of time to satisfy all of the claims by infected HCV claimants." The additional 18 million was announced by Allan Rock, in Parliament, long before the Christmas recess.

While reading the CRC assessment, I was struck by the realisation that the Society is once again claiming to publicly state that all victims of tainted blood must be compensated on the same basis. To wit: "By accepting the CRC offer we [the Board of HeCSC] are in violation of this principle." Is this not the same Society that hired lawyer Marlys Edwardh last spring, and waived its rights to equal compensation for all?

In March 1998, a few directors of HeCSC embarked on a mission to prove the government's fault and negligence with respect to the poisoning of tens of thousands of Canadians pre-1986. We worked around the clock keeping hepatitis C the top news story for weeks! We worked tirelessly to educate Canadians about the tragedy that occurred through government negligence.

Two months later, I resigned my position of Vice President on the board of HeCSC over exactly this issue. As board members, both Jo-Anne Manser and I felt that hiring Ms Edwardh and agreeing to her "conditions" would violate the principles agreed to in February 1998 by all board members to compensate everyone equally.

Then Mr. Beaty told us it was time to abandon our "activism" efforts and return to the pacifism for which we were known. Mr. Beaty asked for Board approval to hire lawyer Marlys Edwardh and accept her list of "conditions." Mr. Beaty made his return to the board conditional on hiring Ms Edwardh.

The hiring of this lawyer, and her conditions, washed away any and all hopes of getting equal, adequate compensation for all. Her main "condition" was that HeCSC must "not be interested in pursuing or putting forth a 'fault based analysis' of why assistance should be extended to persons beyond the periods 1986-1990," nor would we be permitted to try "to identify other time periods where the Government of Canada, provincial governments or indeed any other players in the blood system were negligent." Another point HeCSC was forced to agree with was that the board would not promote "a financial assistance package by way of a lump sum payment." (Thus not resemble HIV compensation in the least!)

These conditions directly contradicted the mandate of the HeCSC-yet the majority of directors went against the HeCSC mandate, voted to accept Jeremy back and hire a lawyer who stacked the terms and conditions for compensation against the HeCSC membership. It was a black day, as the government succeeded in dividing our group even further.

Ms Manser and I believed that HeCSC should continue to pressure and shame the liberal government into equal compensation. We knew we were very close to winning the battle for all and were afraid if we were to stop the pressure now-everyone would loose. More importantly, HeCSC would lose. There was a lot at stake in early May: credibility with the politicians, media and supporters, but also, more importantly, with the members we represented. We worked so hard at educating the Canadian public that even people not affected by the tainted blood scandal had an opinion. Canadians understood the hepatitis C issue and a resounding 89% of Ontario residents surveyed believed all transfused, regardless of when they were infected, should be compensated equally.

Over the past year, people familiar with our cause cannot believe that this battle was lost for pre-1986/post-1990 victims of tainted blood. Politicians, police investigators, media and even lawyers have asked, "what happened?" "Why did you back down?" "You had the government up against the wall." Hindsight is always 20/20, but in this case it is sad to see how much we truly lost. A few times throughout this year we have tried to resurrect the issue, but it appears the effort is futile.

Now Mr. Beaty asks members to "support for HeCSC's position" and says that a "YES" vote will "take the pressure off the federal government to compensate pre-86/post-90 victims." It is our belief that we lost this battle last May, when we backed down and accepted Ms. Edwardh. We lost a lot that day in May, but most of all, members lost faith in Mr. Beaty and the Board of the Hepatitis C Society of Canada.

It is time for you to stand up and be counted. The Hepatitis C Society of Canada will be holding its Annual General Meeting (AGM) and Election of Officers in Toronto, Ontario on Saturday May 29^th, 1999. If you are a member of the Society you have a say in the future of the Society.

If you are a member of the Society, you will be receiving your proxy in the mail. Your proxy is your vote! It is an opportunity to make a difference. Do not let this opportunity pass you by! Ask the Society for a complete list of who is running for election, and ask for information about these individuals. You need to know as much as possible about those being elected to represent you.

The purpose of an AGM is to set the goals and direction for the coming year. It is time for you to be listened to. Tell the Society in which direction you wish them to proceed.

When you receive your proxy in the mail, understand that if you leave it blank-the current board will cast your vote, for you. If you fill in the blank with a name - the person named must be a member of the Society, and must be present at the AGM. If these two criteria are not met, your proxy will be considered spoiled, and your vote will not count!

The bylaws of the Society are vague and do not clearly define some serious flaws that may have occurred in this past year. First, it is my understanding that 3 ex officio (past) directors were returned to director status, filling positions vacated by directors who left the Society. The bylaws read that an ex officio holds the position for three years. Does that mean the ex officio directors can return to director status in order to fill vacated positions? What of the three-year term of the ex officio, returned to director status? Does it start again when a new director fills the vacated position?

More importantly, the Board has not met face to face at all this year. Some business has been conducted by conference call, but unfortunately, conference calls are no substitute for face to face meetings. Regularly scheduled board meetings allow the members of the board to get to know one another and allows for strengths (and weaknesses) of the individuals to show. These meetings serve as a sounding board for the members, as represented by the directors. A telephone conference call cannot replace a board meeting, which brings together directors from across the country. It cannot replace the 16 to 24 hours spent sharing stories, ideas, and dreams.

Your Society needs hard working volunteers to fill positions on the new Board. If you have extra energy and would like to put in lots of rewarding hours, or know of someone just right for the job, please consider getting resumes in to the HeCSC National office as soon as possible. Let's send a strong message to the Hepatitis C Society of Canada-that we are willing to move ahead into the new millennium, together!

Leslie Gibbenhuck

This column is a response to requests for a personal classified section in our news bulletin. Here is how it works:

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.

The drug VX-497's activity against viruses in cell culture was compared to that of ribavirin, both alone and with IFN-alpha. VX-497 is being studied in two Phase II clinical trials for HCV infection. VX-497 is an inhibitor of IMPDH, a human enzyme essential for one of the building blocks of RNA and DNA. It may block the growth of certain cells as well as blocking viral replication. In one of the studies of the activity of VX-497 versus ribavirin against selected viruses in vitro, VX-497 was found to be 15- to 186-times more potent against HBV and several other viruses. Preliminary data suggests VX-497 may be more potent against bovine viral diarrhea virus (BVDV), a flavivirus, similar to HCV. Scientists have not yet created an in vitro culture system that measures the replication of HCV.

A Phase II blinded, dose range-finding study of VX-497 alone in HCV-infected IFN non-responders began last September, and will also assess VX-497's safety and efficacy in reducing ALT and RNA, key endpoints in assessing anti-HCV activity.

There were over 40 states represented, as well as one province. Russell Fleischer, FDA, spoke about the bundling problem with Rebetron. The experts' panel discussed social security, disability and EEOC issues. Our next group of speakers included me. All were from the hepatitis C community and spoke on the issue of community outreach and advocacy. Les Wheeler, of Amgen, spoke on coping with illness.

At lunch our keynote speaker was Dr. Nora Terrault from the University of California. Her topic was "Research Update on Sexual Transmission of HCV." Dr. Leslye Johnson talked about NIH funding. Major areas of research in hepatitis C now include transmission - modes and co-factors; progression: how much, whom and when; the impact of genotypes; genetics and co-factors; and the mechanisms of recovery, persistence, pathogens, disease progression and viral replication. She went on to talk of the major research needs including tissue culture and small animal models, access to chimpanzee models and specimens, access to characteristic human population and specimens and application of sophisticated new technologies.

Dr. Joanna Buffington from the CDCP spoke about the Government lookback program. Dr. Scott Friedman spoke about anti fibrotic therapy, which should be available (at least in the US) within the next 5 years. Early studies show this therapy is very effective at reversing fibrosis but he also added cirrhosis is irreversible. Factors relating to disease progression definitely show the male gender shows faster progression. It does appear the viral load and genotype have a bearing on the likeliness of response but not of disease progression. He added the early results are promising for Interleukin 10. Dr. Maria Sjogren from Walter Reed Medical Center spoke about the Management of Hepatitis C. She explained that the disease can be further prevented by exercise, nutrition, alcohol avoidance, immunisation for Hepatitis A and B, avoidance of excess iron, and seeking early advice. Dr. Sjogren brought up a warning that I have never heard of - DO NOT get Hep A & B vaccinations while on interferon therapy. Latest information reports interferon can and does react with the vaccines.

Dr. Leonard Seeff, Senior Scientist NIH, reported that there will be a conference to access alternative and complimentary medicine and Hepatitis C, held in Washington DC, August 22, 23 and 24^th, 1999.

The final speaker was Dr. Lynt Johnson. His topic was Liver Transplantation. The Conference ended with delegates converging on Capitol Hill to take the messages for increased funding for education, awareness and research.

I would like to thank HFI for sponsoring my trip to Washington and for their continuing support for Hepatitis C around the world. I would also like to thank Amgen for giving HFI a non-restrictive educational grant that allowed the Congress to happen.

HFI has masterminded a brilliant video geared at teens and young people called "Respect Yourself, Protect Yourself -Teens Talk to Teens About Liver Wellness." It is a nine minute educational must, that teaches the risks associated with the spread of hepatitis B & C.

We were also told that HCV Global Foundation will be hosting the Third Annual Conference - "The World and HCV," August 21^st - 23^rd, 1999 at Mills College in Oakland, California.

I hope you find this information helpful, should you want more information, please do not hesitate to call me at: (250) 490-9054

Leslie Gibbenhuck

HeCSC Head Office sent the following information to the HepCAN list. It has been shortened to fit in this bulletin. If this issue concerns you, you should obtain the complete information through the office of your local chapter.

If you received tainted blood before January 1, 1986 or after June 30, 1990 this information is very important to you. Your Society has prepared an assessment of the Canadian Red Cross (CRC) offer to pay each pre-86/post-90 victim approximately $3,000. Our comments are based on the CRC press release dated March 29, 1999. Proposed Timetable-The Society believes that this timetable is impossible to achieve:

April - publish notices of guidelines on how to make claims and receive voting materials.

May 31 - deadline to register to receive information packages.

June 15 - deadline to submit claims for voting purposes.

June - creditor meetings and voting will take place.

July 16 - if sanctioned by the court, the plan will be implemented on July 16.

Within thirty days of the implementation date cheques will be issued to each transfusion victim.

Your decision may be influenced by the following:

If you vote NO and more than one third of the transfusion claimants vote NO:

· You will not receive approximately $3,000.

· You will be in a position to participate in all future developments without waiving any of your rights; for example the RCMP criminal investigation and the pre-86 negligence in buying US prison blood products.

· You will show your support for HeCSC's position.

If you vote YES and more than two thirds of the transfusion claimants vote YES:

· You will receive a cheque for approximately $3,000.

· You will waive your rights to sue the CRC.

· You will take the pressure off the federal government to compensate pre-86/post-90 victims.

• If the transfusion claimants vote NO and the government does not increase the compensation package and the CRC goes bankrupt, the amount of compensation for the pre-86/post-90 victims is undefined.
• If the CRC wishes to initiate compensation to each victim with a cheque for $3000 but no waiver, we support this compassionate and humanitarian gesture. We recommend that they follow the payment without waiver approach of the Ontario Government. In December 1998 the Ontario Government began issuing cheques of $10,000 to each pre-86/post-90 victim in Ontario. Our society has always publicly stated that all victims of tainted blood must be compensated on the same basis. By accepting the CRC offer we are in violation of this principle.

We cannot advise you on which decision to make. However, the information will help you make the right choice for your own situation.

If you have any questions about the offer you should call the closest CRC location to you. We have asked for an '800' or collect number to call but have not received it at time of going to press.

U.S.H.A.

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

Jim Poyner or Ken Baxter

Tel. (604) 988-6321

Fax (604) 988-3632

or

Siskind, Cromarty, Ivey and Dowler

Michael Eiazenga

Tel. (519)672- 2121 Local 332

Tel. 1-(800) 461-6166

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:

Trisha Plunkett Tel. (250) 479-5369

National Compensation Hotline

Tel. 1-(888) 780-1111