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.

Peaceful, carefree, young and innocent.

We rushed to the waters, curious.

Kind, beautiful, handsome and eager.

No burdens.

Aliens? Mystery? Fate? No matter!

We surf on through this Hep Sea, fearful.

Pounding waves crash. Monster wave coming.

Nowhere to hide.

Friend in torment, struggling bravely.

Grabbed by the undertow.... stolen!

Anguished heart crying, we drift alone.

Arms empty.

Gathering to us, friends and loved ones.

Good food, hugs, and memories sharing.

Talking, comforting, hot tears stinging.

Hearts can mend.

Away this ebbless Sea waits a garden.

Trilling songbirds, and flowers wondrous.

Smiling friends with open arms, welcoming.

Peaceful rest.

. . . .Audrey R. Knight

February 3, 1999

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* When someone talked about blue-green algae, you thought it was about pond scum, not the Spirulina dietary supplement.

* If someone mentioned Alpha-Lipoic Acid you thought it was Timothy Leary's latest experiment.

* St. John's Wort was probably what John got for not praying enough

* Interferon sounded like the name of a Klingon starship Kirk wanted to phaser out of existence.

* Phase III Clinical Studies was probably a mid-semester exam only worth cramming for and promptly forgetting.

* An "injection site" sounded like a new housing development

* A nap was a seldom available luxury, not a sometime requirement

* 12 steps was a two story house

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2 cups chopped onion

1-1/2 cups chopped green pepper

1 (14 oz.) can whole tomatoes, undrained (cut up)

3/4 cup picante sauce

2 cloves garlic, minced

2 tsp. ground cumin

2 (15 oz.) cans black beans, rinsed and drained

12 (6-inch) corn tortillas (can substitute flour tortillas)

GARNISH: (Any are optional)

1 cups shredded low-fat Monterey Jack cheese (8 oz.) or more

(can mix cheddar cheese also)

2 medium tomatoes, sliced thin

2 cups shredded lettuce

Sliced green onions

Sliced, pitted black olives

1/2 cup reduced-calorie dairy sour cream or plain yogurt

In a large skillet combine onion, green pepper, undrained-cut up tomatoes, picante sauce, garlic, and cumin. Bring to boiling; reduce heat. Simmer,uncovered for 10 minutes. Stir in beans (rinsed and drained).

In a 9x13x2 inch baking dish, spread one-third of the bean mixture over the bottom. Top with half of the tortillas, overlapping as necessary, then half of the cheese. (You may want to use more cheese.) Add another one-third of the bean mixture, the remaining tortillas and bean mixture. You can add some cheese on top before baking. I have put the cheese on before and after, it's good both ways.

Cover and bake in a 350 degree oven for 30 - 35 minutes, or until heated through. Sprinkle with the remaining cheese. Let stand for 10 minutes.

If desired, top with tomato slices, shredded lettuce, green onion, and olives. Serve with sour cream or yogurt. Cut into squares and serve. Makes 10 to 12 side-dish servings or 6 - 8 main-dish servings.

I have been making this casserole for years!!! Can't remember where I found it, but I sure am glad I did. Now I will tell you a few variations I've made over the years of buying the wrong ingredient or this or that. I have used flour instead of corn tortillas, have used both at once. I have used chicken in this. If you have leftover chicken breasts you've grilled, baked, or boiled, you can cut it up and add it to the bean mixture or sprinkle on one of the layers. The possibilities are endless with this one! Have fun and enjoy!

A salad that goes nicely with this is cut up cucumber, red onion, and fresh tomatoes, marinate in a good Italian dressing. Let stand for an hour or a few hours. Serve chilled with the casserole. Anonymous

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Since the election of our new steering committee, the Victoria chapter has become even more productive than before, and our outreach to the community has outgrown our meagre means. We are all ill with Hep, and we are all volunteers. And we are tired. So, we took the position that the national office of HeCSC should support our work and help us to expand it nationally, since no one else is providing our service. To this end, over the past few months, we sent several letters to Tim McClemont telling him clearly what we wished to do, asking for help. As has been the general policy from Toronto to Victoria for the past 2 years, head office ignored our request, and shelved it yet again. Our steering committee met to discuss this last turn of events, and we decided that you, the membership, should know what is going on, and that you should choose how you want YOUR SOCIETY to operate. Below you will find a letter from Judith Fry, Ron Thiel, David FitzGerald, Ken Crews, Jean Day, Joan King, and me David Mazoff, to Tim McClemont, in response to his non-response to our letter. Copies of our letter and the responses were sent to the Board of Directors, and Jeremy Beaty. In that they have refused to do the honourable thing, we are bringing this matter before YOU, the Hepatitis C Society of Canada.

To Tim McClemont

Executive Director

HeCSC

From: Dr. C.D. Mazoff

Co-chair, Victoria Chapter

(for the steering committee)

This morning, Tuesday March 16th, I called you to ask why your response in writing to our telephone conversation was so evasive and non-committal.

As you remember we discussed the following issues and you agreed to each one on the phone.

1. That the bulletin would go national, that one member of the BOD would sit on the editorial committee and that using our bulk mailing permit this would save everyone a lot of money. We would get regional editors and increase the size of the bulletin, as opposed to the idea of sending out the hepc.bull as is in bulk to local areas which would then insert local information there and mail out individually.

2. I laid out a proposal for a first contact package, consisting of the most recent FAQ, a subscription to the bulletin, and our pamphlet and more. You agreed this was a very good idea. I explained the finances of the operation, how printing 100 FAQ's cost $3.50 a unit but that printing 1000 would lower the cost to below $2. That we would sell them for $7 and give $1 to Patti for each, leaving a profit of $4. You agreed. You agreed to combine the two subscription fees (National and hepc.bull) and raise the combined fee to either $25 or $30.

3. You agreed to our request for a postscript laser printer (1200 dpi) and new and proper equipment for Joan who has done more than most without reward, or recognition in any tangible form from National. The quality of the bulletin is beyond question and producing it on her small monitor and clunker only makes the job harder. You agreed to honour her.

4. I laid out the details and costs of the pamphlet series, and that we have secured printers and that everything is in place. I mentioned that costs would go down from $0.40 to $0.10 per unit should we increase the run to a national level. You mentioned that you wanted Health Canada to look them over. Well if health Canada was so bloody concerned, why did they let the tainted blood into this country, lie to the public, not educate physicians, or produce information themselves—which is why we exist (I thought).

5. So the bottom line, in your response to our request, was more stalling. I had mentioned to you on the phone as well, how when we wanted to put the HepCAN online—a service that should have been provided a long time ago by Head Office—you balked and stalled over a measly $90 for 9 months—and $90 instead of $360 because I talked the service down, not you. So, while you can't decide for however long you want, people out there walk around in darkness because of your timorousness, and the lack of action of Health Canada.

6. I also mentioned to you the necessity for coordinating strategies, and especially information technology. I reminded you that we have great expertise with computers and that we have set up a database that would better benefit our members by allowing us to trace the progress of their illness and the efficacy of treatment, as well as provide local physician contact and evaluation. You said, as usual, "great idea."

7. The point is that 2 years ago, I offered to come to Toronto and set up the computers and you refused; and my understanding is that you do not wish to share "your" information with us—just as you do not open your books to us, just as you want money from local chapters but give us NONE OF THE $250 000 you get each year from the government. We know that it has been spent on a lot of air fare and hotel bills. Personally, I take a bus, and crash at friends. That way I can print out more bulletins.

We expect a proper response to this letter.

Dr. C.D. Mazoff

Co-Chair HeCSC Victoria

for the Steering Committee

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First Reply:

David:

Sorry that you don't like the letter. I don't know what else to say. I'll respond when the Steering Committee has reviewed the letter and responded. I don't react well to "demands".

Sorry,

Tim

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Second Response:

David

I did not agree to any of these proposals. They are all good ideas but I do not have the ability to embark upon them because of the cost implications. I appreciate your ideas and suggestions but I cannot act upon them immediately. They need consideration by the Board because of the cost, period. If you call that stalling, then so be it. These are the constraints I work under.

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Have your hospital records been lost?

Do you think you contracted Hep C from Gamma Globulin shots?

______________________________________________

Hi, I've stored up many Hep C newsletters because I had a "what's the use" attitude. Tonight I read. I read Darlene's story. I'm glad for you and your family. The thing I'm afraid to lose is the love. After a while, an ill person can drain the life's love from those around them. I work with people who have diseases that do just that—suck the life out of love—not all, but many. I don't want to be an energy drainer. I want to give. What I write here to you is my way of re-involving myself and counting my blessings.

This disease, and consequently the combo treatment (by the way, the newsletters from Darlene and Hep C really helped me fight for my rights) have left me in some despair. My first genotype was 2b. After 6 months of interferon 3 million units 3X/week and 1000 mg of ribavirin daily, I dropped from a viral load of 28 million to 350 thousand and stayed there. Then the virus must have mutated, because my genotype now is 1b. I spent 3 months more on 5 million units of interferon 3X/week with 1000mg of ribavarin daily to my final 4 months of treatment on 10 million units of interferon 3X/week and 1200 mg of ribavarin daily. That all ended in September of 1998. But my side effects continue, especially unexplained neuropathy. A 10 day prescription of Biaxin finally rid me of the rashes (developed on ribavarin) just three weeks ago.

During treatment I really thought I was going insane and eventually became quite depressed, but in a peculiar way. Not only did I have the classic incessant crying (which is not me at all), no energy, arthralgia, myalgia, and insomnia alternating with hypersomnulence (I literally would sleep 48 hours without eating and drinking), I also became very aggressive, paranoid and suspicious, and suffered what I call horrible temper tantrums. I was not fit for the company of the ones that loved me. I scared them as well as myself. Paxil, 20 mg per day, was a miracle. How I made it is beyond me. Physically, my hemoglobin dropped from 16 to 10, my WBC dropped below normal, and my platelets dropped to the point that my MD warned me to avoid physical activities, such as stair climbing and running for fear of bleeding into my joint cavities. I could not walk up steep grades without gasping for air, sometimes I literally had to get down on my hands and knees. The muscle and joint pain was almost more than I could tolerate, and would have been except for the narcotic oxycodone (percocet without the Tylenol).

Tonight, March 7, 1999, I am alive, and have energy enough to write and to fight. I just needed to flashback and remember. I think it was worth the effort, although my viral load never went below 350,000. Somewhere in all my rambling is a message of hope and of love. Although I am now beginning to suffer from the chronic fatigue that plagued me in mid-1997, before treatment, I now know my enemy and that helps. My heart goes out to you Darlene, as well as to all the others who are suffering. I needed to reach out to someone who knows. I am afraid but I am a fighter, a most wonderful fighter. I want someday to be more active in a cause that really connects me to people. I've done so much wrong, it's time for doing some right.

Thanks for being there.

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LETTER TO THE EDITOR

Dear Editor,

As a Hepatitis C Virus (HCV) sufferer and a former health care worker I would like to add some information from the perspective of a patient with HCV for over twenty years.

The full effects of this virus are yet to be seen in our society. Methadone clinic patients are testing positive at an alarming rate for this virus. Health care workers are not being properly monitored, and the CDC only wants new cases reported to them, yet 80% - 90% of HCV sufferers are considered chronic.

Why are Police and Fire Departments, to include paramedic rescue teams, not adequately educated about protecting themselves from this virus? What about the issues of liver transplants and organ donations? Where are the discussions concerning blood banks and the ordered 'lookback' by Health and Human Services (HHS)? Who is monitoring the mentally challenged in our State Institutions? What of the American Native population?

Who will coordinate the teaching of HCV in all the Medical Schools across the nation? The issues are broad and far reaching for my community. Many patients, to include Veterans, have been transfused with contaminated blood, or blood products, during surgery in the past. Persons infected with HCV that have never been gainfully employed can not even apply for Social Security. Those that can apply to get Social Security Disability Insurance (SSDI) are being turned down at an alarming rate.

I feel that our physicians and nurses are not yet properly trained or are provided an adequate education concerning HCV, and all the associated "side effects" that disable us on a daily basis. The symptoms and complaints are so vague that it is sometimes very hard for me, myself, to try to explain to my physician what is wrong. Many chronic patients are in pain and are told that because of their liver disease they can not be given a safe pain medication.

I thank you for this opportunity to provide some additional information to your readers.

Sincerely,

Kevin Donnelly

Captain, USAR

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Under the direction of Dr. Hogg, a telephone interview was designed to compare the quality of life of people who contracted Hep C via blood transfusions in the late 1980's as compared to people who had the same surgeries and blood transfusions but did not contract the virus. This will be our first opportunity to present this data to other researchers, policy makers and the media.

A light lunch will be served to save time for all attendees. Due to limited space, attendance is by invitation only.

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At last count, as of the March issue:

• Total cost of producing and mailing the bulletin since February 1996: $17,101.09
• Total received from subscriptions, donations to the bulletin, and ads: $3085.70.
• Number of subscribers who are up-to-date: 103
• Number of newsletters being sent out: 960

Luckily, we receive other donations which help pay for our newsletter. I think it is important to get the information provided in the newsletter to all those who need it, perhaps especially those who cannot afford to "subscribe." If we run out of money, and we have come pretty close on a few occasions, we would be in danger of not being able to mail out that issue, other than to those who have paid. Please! If you are able to subscribe, do so. Our resources are low right now, due to printing out our transmission pamphlets and FAQs, and because of the upcoming Fun Run and HepFest Northwest.

How do you know if your subscription has run out? There should be an expiry date on your address label. If there’s not, either your subscription has run out, you have never subscribed, or we’ve messed up. In that case, please let us know. We send you the bulletin anyway, because we want you to be informed, even if you can't contribute. If you are getting the bulletin by mistake, or if you really don't want it, please give us a call. Thanks!

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In a lengthy, detailed letter dated March 3, 1999, and sent to the Class Action lawyers Harvey Strosberg, J.J. Camp, and Pierre Lavigne, Jeremy Beaty, Chair of the Hepatitis C Society of Canada took a strong stance, representing the views of the victims transfused between 1986 and 1990. Mr. Beaty said that HeCSC has begun a process of assessing the proposed settlement, which cannot be finalised until receiving the final proposal and more comments from the victims. In his letter, he included a list of issues and concerns from "these victims, our Board of Directors, Chapter Heads, members and other individuals," adding that they are also seeking a legal evaluation to be received before the end of March.

Mr. Beaty included a long list of complaints and concerns in his letter, including: having to pay legal fees in making claims for benefits; PCR tests and biopsies will overload the medical system and postpone compensation; having to sign a waiver to receive the initial $10,000 (which he states is inadequate); other actions such as the mass tort action for children and compensation for the HIV secondarily infected, will be paid out of the Fund, as well as legal fees and administrative costs; the economic impact on HCV + children has been ignored; the victims have to carry all the risk as to whether or not the fund will be sufficient; the holdbacks are unacceptable; the lack of insurance provisions; the victims don't trust the doctors to move them from one level to the next; home care will be paid out of the Fund even though it is covered under provincial health plans; and the fact that if the victim dies from non-Hep C causes, he/she doesn't qualify for death benefits.

Mr. Beaty went on to list the options that HeCSC believes should be considered in the negotiations:

• Qualify blood infected hepatitis C victims for the disabled deduction.
• Access to RRSP assets from victim or spouse, without income attribution, to pay down the mortgage.
• Access to mortgage insurance through CMHC.
• Increased child tax credit where the child is the victim or where the parent is unable to provide care due to illness.
• A defined "death benefit" regardless of cause.
• For those victims who are able to continue to work, make income, mortgage, travel, life and health insurance programs available at regular rates. The governments would guarantee the excess mortality with a private insurer.

Copies of the letter were being made available to all members of Parliament for their consideration, the media and the HeCSC membership at large. A copy of the letter was sent out to each of the Chapters, as well.

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BC LCDC

655 West 12th Street

Vancouver, BC, V5Z 4R4

Tel: (604) 660-6044 Fax: (604) 660-0403

How good are serological tests for HCV? The antibody binds to the protein + the structural protein NS4 + the envelope.

EIA-3 is 97 percent accurate Strong EIA IB+ (IB=immunoblot) is 73 x cutoff >3x cutoff can be positive or negative.

Between April ‘97 and March ‘97, the BC CDC - 110,000. The response to the lookback was 5%. Approximately 8883 or 8.1 percent were positive. Using RIBA- 23 % were positive and of those between 85 and 95% were PCR positive. Of the 47% that were indeterminants, between 5 to 16% were PCR positive. Serology cannot distinguish between active and resolved HCV.

Samples: Serum must be separated between 4 and 6 hours or there is a nucleotide degradation. Once in individual tubes and separated, the nucleotides are stable at 4^o C. for up to 4 days.

The commercial PCR test costs around $250 Canadian. Amplicor measures betweeen 10³ to 10⁶ . Chiron - 0.2- 120 Meq/mL. bDNA 4-10 fold higher than Amplicor.

Is the HCV load stable over time?

Chiron 10-20%; Amplicor 20-40%.Reproducibility is 1-4 fold.

Clearly there is need for improved standardisation.

We must be better able to measure the anti-viral efficacy, replication, and the sustained response to therapy.

70% of what we see in BC is genotype 1.

We must have better data management. We must utilize information from public health, study populations, intervention and prevention programs, optimizing outcome programs, risk factors, and the disease itself.

Clearly, information is the key.

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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

Poyner Baxter Blaxland

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

Tel. 1-(888) 780-1111