Meetings on 2^nd Thursday of every month.

At the Health Unit-Central Vancouver Island,

1665 Grant Street. Nanaimo BC

Next meeting August 12, 1999 at 7:PM

Contact Susan (250) 245-7654

or Rose (250) 714-1937

This is our little Heppy Face!

You can stretch him, bounce him,

Copy him, animate him,

But you can't make him smile.

(kinda like silly putty)

Hi everyone! Gee, where's the summer going? Squeeky!!! Saw you on the news tonight and you were great! You said it like it IS - good for you and thanks from everyone.

HepFest is this weekend and some of us are looking forward to coming down, but some are too sick to make it. They send their best and wish they could be though. I was thinking that if everyone could make it that is really sick, Victoria would have to move over to let them in.

Our last meeting on July 8^th saw 40 people show up, and I suspect everyone enjoyed the coffee break more than the meeting. Compensation issues can sure bring people down. It gave people a chance to mingle and chat.

We are delighted that Dr. Robin Hutchinson, (our Central Vancouver Island Medical Director) accepted the invitation to be on our board. Having workshops to educate the public and medical professionals about Hep C is very high on his priority list. He spoke about the importance of research and a little about himself. Very interesting man. Everyone enjoyed what he had to say and that he was very accessible to talk with. He hopes to make all our meetings in the future.

We couldn't be any happier to have Merv Unger publisher/journalist/reporter (and he says floor sweeper, too), join us also. He has great media and promotion ideas.

Thank you, Diane Sheppard for taking over as our new our secretary/treasurer.

Please everyone, keep coming back to our meetings, and remember - we need volunteers, even if all you can give is your smiling face and encouragement. We hope and pray for a downtown office by fall so we'll have a place where heppers can mingle for support.

CLEANING UP BLOOD SPILLS

The purpose of the study was to evaluate the inhibitory activity of the polyphenolic disinfectants and a chlorine compound (NaDCC) on hepatitis C virus (HCV) binding and infectivity.

VERO cells (a continuous cell line derived from kidney cells) suitable for analyzing HCV binding and replication, and the competitive reverse transcription (cRT-PCR) technique for HCV RNA molecules quantitative evaluation were chosen as a methodologic approach for testing antiviral activity.

The polyphenolic disinfectants inhibited HCV binding and replication at their recommended use dilutions. The chlorine compound was ineffective probably because of its low concentration in the presence of protein substances in VERO cell cultures.

Effect of Chlorine and Phenolic Disinfectants Against Hepatitis C Virus

My friend "Harry" finally decided to have a biopsy. With his results in his hand, the doctor told him last May, "Harry, you are a perfect candidate for combo therapy. The treatment consists of interferon and Ribavirin, or Rebetron, and it will cost you about $300 a week. Unfortunately, Pharmacare will not pay for it at this time."

I decided to try to help Harry out. On June 7^th, after doing some investigation, I got a response to a query I had directed to Craig Knight, Director of the Intergovernmental Relations Division at the Ministry of Health: "Ribavirin is under review by Pharmacare for approval as a covered drug therapy. There should be a decision made on this drug within the next 2-3 months." In the meantime, the virus is munching away on Harry's liver.

One of the problems involved is that the price of Ribavirin is under investigation by Pharmacare,

In a letter from Laura Reinhard, Director, Compliance and Enforcement Branch of the Patented Medicine Prices Review Board, dated July 2, 1999, she states, "Rebetron is a new patented medicine and the price of this drug product is currently under review by Board staff. As part of our price review, the price of Rebetron will be compared to the prices in the seven countries listed in the Patented Medicines Regulations. These are France, Italy, Germany, Switzerland, Sweden, U.K. and the U.S."

What is the cost of Rebetron in these countries? There is no price in the European countries, because those have refused to accept that the two products, interferon and Ribavirin, be "bundled," or sold together. In the US, Ribavirin cannot be sold unless it is sold with Intron-A brand of interferon.

A little compounding pharmacy in Pittsburgh is about to try to solve the problem. They will be making their own version of Ribavirin, whose patent expired on July 8. The pharmacy, Fisher's Specialty Pharmacy Services, will import the main ingredient from overseas, and will then pack the powder into capsules, like the pharmacists in the "olden" days, according to the doctor's prescription. This should bring the price down to 20% of the actual price. Apparently, the July 8 patent expiration provides a loophole. It prevents a generic drug maker from copying Ribavirin, but it doesn't prohibit compounding.

The price is not the only problem. Some people haven't responded to Intron-A, or have had an adverse reaction of one sort or another. They would like to try the Ribavirin with another brand of interferon. Thanks to this tiny pharmacy, they may have that chance, without having to buy the whole package and throwing out the Intron-A.

AIDS groups have long been dispensing low-cost Ribavirin to people through "Buyers' Clubs," and customs officials at borders have usually been helpful, if the patient is armed with a prescription from his/her doctor.

The producers of Rebetron say that it is dangerous to try Ribavirin with another kind of interferon, because no trials have been done to prove its safety. They fear liability issues.

The success rate of Rebetron is about 40%.

Randy Juhl, chair of the FDA's advisory committee on pharmacy compounding, was quoted as saying, "It's very easy to say the pharmacy is providing a valuable service . . . but you need to look at the risks."

And other people speculate that the pharmacy will not be able to provide enough Ribavirin to fulfill the needs of Hep C sufferers. If you want to try, here's the address:

Fisher's Specialty Pharmacy Services

3904 Perrysville Avenue

Pittsburgh, PA 15214

Phone: (412) 231-3777

Toll Free Phone: (888) 347-3416

Toll Free Fax: (877) 231-8302

More info:

______________________________________________

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 cheques payable to HeCSC Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 926 View St., Victoria, BC V8V 3L5. 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 cheque for a donation of $2, if you can afford it. Mail to the address above.

After reading the article "Vaccine Woes" in the July 99 issue of hepc.bull, I asked my family doctor to do a blood test to ensure that the Hep A & B vaccines took. To my surprise and horror the Hep A vaccine didn't take. Now I am going in to repeat the vaccinations to hopefully build up some immunity to this potentially fatal virus. I read between the lines every month and I can hear your frustration because compensation matters aren't moving ahead for us not covered by the 86 - 90 plan. I feel your frustration at the lack of support by the National Hep C organizations. Take a moment, feel pride and accomplishment, because today you and your staff have made a difference. You may have saved my life and you surely have improved the quality of it by giving me so much information about the disease. Not all vaccines come in the form of needles. The "hope vaccine" comes from people like you.

Thanks from my family.

Sincerely,

Ingrid Anderson

Terrace, BC

The Kitchener Chapter of the Society is not having any meetings for July & August this year. We hope to have a speaker for September.

We in Victoria were privileged to have both the International and the Canadian quilts present at our NorthWest HepFest. For those of us who were able to see them, it was a moving experience. Many of us were moved to tears. Others felt "embraced" by the hepatitis C community through the quilts. People were able to see tangible evidence of their internet pan pals--their hand prints, their handwriting.

We sent quite a few new squares for the Canadian quilt back to HeCSC in Toronto. It's not too late for you to add yours, and you may send two squares if you wish, one for the Canadian and one for the International quilt.

The squares should measure 12" by 12". For the Canadian quilt, you should use red cloth with a yellow hand print, or yellow cloth with a red hand print. You should use black for your name and any message. You may use different colors on your square for the International quilt, but it should be the same size as the Canadian square. For both quilt squares, please leave a 1 inch border, so that a seam is possible.

You may also make a memorial square for a family member who has passed away with Hep C. You should mention the date of death, and any other pertinent data. A family member may place a square on either quilt, as well, preferably stating how s/he is affected, for example: "My mom has Hep C."

Thank you, Tim at HeCSC and Marie!

______________________________________________

Thank you, Anne McIlroy Re: The Globe and Mail article, Wed. June 30, 99 by Ann McIlroy!

You wrote that The Red Cross didn't stop taking prison blood in Canadian prisons until 1971. I've been informed the only time window the RCMP is investigating now lies between 1980 - 1990. I suggest they follow the trail back further to get a clearer picture and they might find someone was making a whole whack-load of money off our own Canadian prisoners.

I faxed the following articles showing that the Red Cross and Canadian government knew in 1970 that the blood was bad among IV drug users in 1970 and long before then. Our prisons were full of drug users infected with Hep B and C. The government and health officials knew this was not the same as infectious hepatitis, and that donors appeared healthy. Here are local findings from old Victoria newspaper clippings found at my local library. You, too, can dig in your own local papers' archives by subject of blood or hepatitis. This is some of what the articles said:

(From The Daily Colonist November 5, 1970, Title: Hepatitis Drugs Breed Danger) Sgt. John Gelling, who became Central Saanich's Police Chief January. 1, 1971, warned "Next year it is going to double and it has got nothing to do with sewage. Dr. J.L.M. Whitehead (Victoria's senior medical officer 1971) and other local health people are always screaming that last year our hepatitis rate in Greater Victoria was on the increase." Gelling said, "The increase will come because of the increased flow of drugs, especially from speed and heroin users, who, he says, often use dirty needles to inject the drugs."

(From The Daily Colonist June 25, 1971, Title: Blood from Donors Tests Based on Hepatitis) All blood distributed by the Red Cross transfusion service in BC is being tested for an elusive form of hepatitis, the origins of which have been discovered only during the past two years. A spokesman for the Red Cross blood service said from Vancouver, that blood collected in the province now is screened for a biochemical particle called the Australia antigen, which induces serum hepatitis. The Red Cross warned a Serum hepatitis, long linked with contaminated blood transfusions and inadequately sterilized needles and syringes is as damaging as infective hepatitis, which has been connected with impure water. The inference to blood transfusions was alarming-people who appear healthy donors might be spreading this serious disease. In addition to curbing the spread of serum hepatitis, the Red Cross tests may be identifying persons with early liver cancer and cirrhosis of the liver. In one study, a 20% incidence of the antigen has been found in cases of liver cirrhosis and a 14% incidence in cancer cases.

These articles were taken from 1970 and 1971 newspapers! Was this the ALT test (available in 1958)? It would have shown the Non-A Non-B suspicious results. Didn't they have just and reasonable cause to use the ALT test; knowing there was an insidious, hepatitis virus concealed in healthy appearing donor's blood? I had a lacerated liver in a MVA December 15, 1962 (transfused with 8 pints) and another pint of blood for a booster in January of 1971 after an operation.

Hep C victims' medical records have been destroyed. Doesn't it make you feel as though we're in Kosovo? They destroyed the Albanians' birth records, deeds, driver's licenses-all personal documents. Isn't it ironic our libraries hoard mountains of volumes of useless, redundant records that show how much government has pried into people's personal lives (such as fertility questions on census data), but they trashed our very own personal history, medical records. They allowed and encouraged hospitals and doctors to destroy them ... they were worried perhaps? I urge all of you who know anything at all about the 1960's - 70's blood donors, where blood was collected (such as skid row or jails), who collected, how much money received for blood, who paid or who processed the blood to share with us and the RCMP, also. That old article or information you have is doing no good on your kitchen counter or coffee table as you stare at it. It may make us feel better to show friends and family how rotten is all is, but it's doing no good unless we compile our information. I urge you to join the HepCAN e-mail group, too. There is strength in numbers and we want you to know that U DO COUNT!

If you have any information, contact the Royal Canadian Mounted Police c/o Blood Task Force 345 Harry Walker Parkway South, Newmarket, Ontario L3Y 8P6 Fax: (905) 953-7747 Phone Toll free TIPS telephone line (1-888-530-1111)

Ingredients:

1 package of California wraps (any flavour will do, but curry is nice)

1 container red pepper hummus (or another flavour of your choice)

1 avocado

1 large potato

salsa

mixed salad

red pepper

smoked salmon, or other fish

Microwave the potato until done (4 minutes on high). Mash in a bowl. Add the avocado and some salsa (about 3-4 tablespoons). This is enough for 4 wraps.

Slightly heat the wraps in a skillet. Remove wrap. Spread hummus on the wrap, put in the avocado-potato mixture, put in some fish, top with salad and sliced red pepper, roll up and eat.

Low fat, balanced and really delish.

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Until now, there has been no effective therapy for interferon non-responding chronic hepatitis C patients.

The study involved twenty consecutive adult patients with chronic hepatitis C who had failed to respond to a 6-month course of interferon-alpha. They were randomly given either double therapy (a combination of interferon-alpha and oral ribavirin), or triple therapy (the same combination plus oral amantadine), for 6 months.

By the end of therapy, a normal biochemical response (alanine transaminase) was obtained in 7 out of 10 patients on triple therapy (p < 0.05), but only in 2 out of 10 patients on double therapy. A desirable negative virological response (serum hepatitis C virus RNA) also occurred in 7 out of 10 patients on triple therapy (p < 0.01), but only in 1 out of 10 patients on double therapy.

Six months after therapy, the normal biochemical response was sustained in 4 triple-therapy patients, but only in 1 double-therapy patient. The negative virological response was sustained in 3 patients on triple therapy, but in no patient on double therapy.

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

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:

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:

Ron Thiel Tel. (250) 652-0608

National Compensation Hotline

Tel. 1-(888) 780-1111