Hepc.bull

March 1999 Issue No. 10

 EDITORS: TEL: (250) 388-4311

Joan King-Diemecke joan_king@bc.sympatico.c a

Darlene Morrow hepcbc@home.com http://www.geocities.com/HotSprings/5670

C.D. Mazoff squeeky@pacificcoast.net

 

CIRRHOSIS REVERSAL?

NEW YORK (AP) -- Scientists wiped out liver cirrhosis in rats by injecting their muscles with a human gene, raising early hopes for a new treatment for people.

The gene made the rats pump out high quantities of a protein that promotes liver regeneration while reducing cell death. That cleared up serious cirrhosis in the animals, researchers reported.

A liver expert called the work exciting and said such treatment might someday be able to prevent cirrhosis in people at risk for it, and possibly reverse the damage in patients who already have it.

The new work is reported in the February issue of the journal Nature Medicine by Dr. Jiro Fujimoto of the Hyogo College of Medicine in Nishinomiya, Japan, and others.

There's no guarantee the treatment would work in people. The researchers are studying it in dogs and hope to get permission for human testing, Fujimoto said.

The treatment was based on a protein called hepatocyte growth factor, or HGF. Previous work has shown HGF can promote liver regeneration and suppress cell death, while blocking a second protein that encourages scar formation.

The researchers created cirrhosis in the rats by injecting them with a drug. Once serious cirrhosis was established, they injected some of the rats weekly with the gene for human HGF, enclosed in fatty bubbles.

Treated rats showed human HGF in their blood, indicating that the gene had settled down to work and ordered muscle cells to make the protein. The animals started making more rat HGF too.

All 13 untreated rats in the experiment died of cirrhosis within 45 days. But the nine animals that got the highest dose of the HGF gene survived and were free of cirrhosis when removed from the study after 50 days.

Dr. George Michalopoulos of the University of Pittsburgh, who did not participate in the study, said he was excited because it is the strongest evidence yet that HGF might be able to treat chronic liver damage. He said he had never seen such extensive cirrhosis reversed in animals before.


 

Hepatitis C Victims Give Thumbs Down

To 1986 - 1990

Compensation Plan

Ottawa: January 27, 1999. The Hepatitis C Society of Canada finds the 1986 -1990 compensation plan to be unacceptable for a number of reasons. Today the Society is making its position public and speaking out for the 6,600 Canadians who were infected by tainted blood through no fault of their own.

The Society urges the lawyers to remove the cloak of secrecy surrounding the negotiations and seek input from the victims whom they represent in developing an improved compensation plan that addresses their pain and suffering.

The Society has surveyed its forty-one chapters and also received the personal opinions of individual members in establishing its position. The overwhelming conclusion is that our governments have not allocated sufficient funding to compensate those infected between 1986 and 1990. There is grave concern that the opinions of victims will not be considered before the courts approve the plan. The victims are fearful that they will not be given sufficient time to make an informed decision on whether to accept the negotiated compensation plan or pursue alternative legal action.

The Society’s position is outlined in the document "HeCSC: Assessment of the 1986 – 1990 Compensation Plan." Some of the highlights are as follows:

"Today the victims are finally giving their inputs to a compensation plan that was conceived behind closed doors without their participation. We are providing this assessment to all our members so they can make their own personal and individual decisions on whether to accept the negotiated settlement or take alternative legal action," said Jeremy Beaty, Chairman of the Hepatitis C Society of Canada.

The Hepatitis C Society of Canada’s often-stated position on compensation is that all victims of tainted blood must be compensated on the same basis. The 1986-1990 plan in itself contradicts this position and is based on government acknowledged negligence only in this time period. The awful tragedy of illegal collections and shipment of prison blood to Canada from Arkansas and Louisiana is willful negligence by those managing the blood system. It is only one example that negligence occurred outside the time period. We will continue to speak out on behalf of all blood-infected victims until they are treated equally.

Subject to securing funding, the Hepatitis C Society of Canada will seek standing on behalf of its members in the courts when the final settlement terms are put forward for court approval.

For more information, call:

Tim McClemont , Executive Director

(416) 979-5855


 

LIFE AFTER THE COMBO

by Darlene Morrow

Today is January 3rd and I am 45 years old. It seems like a good time for reflection; a time to consider what this life is all about.

Exactly five years ago I was attacked by a mysterious illness. In a matter of months I was struck down from a vibrant, healthy and active life to one teetering on the brink of disaster and uncertainty. Slowly I began to lose my life as I knew it.

My health quickly deteriorated. If this were not enough, I was forced to battle a medical system that I thought existed to protect and help me. I had to give up my job. I almost lost my faith. I almost lost my hope. But without hope, what are we?

Everyday was a struggle. I would often think—when did life get to be so hard? How do I go on? How can I drag my family down like this? Why must they live this life too? And then it was more for them than for me that I found the courage to go on the interferon and ribavirin therapy. I just wanted OUR life back.

For 21 months my life was indescribable. I won't to try to soft sell you—I reacted badly to the drugs. At times I thought I was crazy! The response rate is only 42 percent—it's not even half. What chance was there? At times my husband would beg me to stop. And that's really what I wanted to do. But I couldn't stop hoping. I just wanted my LIFE back.

In September the therapy was finished. I wanted to feel life again NOW. Immediately I had a surge of energy, easily explainable as my hemoglobin rose from 97 to 125. And then it stopped. I was still tired. Very tired. Was this as good as it would get? 3 months went by. I was desperate. I didn't want this to be my life. But then something happened. I began to feel a little more energetic. I didn't want to get excited—this disease waxes and wanes—it could just be a part of the cycle. But I kept on feeling better. I kept on getting more energy.

I joined the gym. I started doing cardiovascular conditioning—the bicycle, then the treadmill, and yes—even the Stairmaster! I started lifting weights. And I kept on feeling better.

I am afraid to say it out loud—I don't want to tempt the gods. BUT I FEEL BETTER!!!! I am about 80% of normal! I HAVE my life back. I feel as though I am blessed. I don't know how long this will last but I am going to enjoy every single second. Every day of that therapy was worth having my life back. And this could be you. You might get your life back. How will you know if you never try?

Forty-two per cent respond. How many will relapse? We need to continue to push for the research to find a cure, to help those people that can't take the combo, to help those people who don't have a sustained response.

Do I think I'm cured???? No, I don't think it will be that easy. But it may be possible that my own immune system can keep the virus at bay. It is one school of thought that it may be the number of liver cells that are infected that is most important. Is it possible for the immune system to have an effect on those infected cells—to keep the virus in the cell from reaching critical levels? Once the population of virus in the cell reaches that level—as they spill out of the cell into the blood—the cell is no longer able to keep up repairs and is destroyed. Liver enzymes rise. Viral load rises (PCR). The more cells that are infected, the more damage occurs. This is where we don't want to be. As the damage continues, the immune system is overwhelmed. And that is where the HCV may win the battle.

So perhaps this therapy has given me the edge. I like to think that it has. I like to think that I'll feel this way for a very long time. I like to think we'll find the cure. Soon.

Post script February 9, 1999: There is more to the story. Unfortunately, 2 1/2 months post treatment, I am PCR positive again., but I had a repeat biopsy and it showed a reduction in the scarring from Stage 2 to Stage 1, and the inflammation, from Grade 2 to grade 1!!!!! There is NO piecemeal necrosis present! The therapy stopped the HCV in its track and the liver is powerful enough to destroy the scar tissue and regenerate new healthy tissue. The official biopsy report read "SUSPENDED HCV."

I still feel great. I am now discussing the option of going on low dosage maintenance therapy interferon. The combination therapy bought me time—time to find a cure. Time to live my life. :-)


 

VICTORIA VOLUNTEERS

Volunteers are needed for all stages of planning the 5 Km "Run For Life," scheduled to take place on July 18th at Lochside Park. Please sign up with Fatima at 652-8945 and help make this event a big success!


 

SUBSCRIPTION FORM

Please fill out include a check made out to HeCSC - Victoria Chapter. Send to:

Hepatitis C Society of Canada

Victoria Chapter

1611 Quadra St.

Victoria, BC V8W 2L5

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I am applying for a grant." ____[]

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(A limited number of newsletters will be available free of charge at group meetings, as well.)

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.

SUBMISSIONS: The deadline for any contributions to the hepc.bull is the 15th of each month. Please contact: Joan King-Diemecke at (250) 388-4311, joan_king@bc.sympatico.ca , Darlene Morrow at 1203 Plateau Drive, N. Vancouver, BC, V7P 2J3, hepcbc@home.com or C.D. Mazoff at squeeky@pacificcoast.net

The editors reserve the right to edit and cut articles in the interest of space.

ADVERTISING: The deadline for placing advertisements in the hepc.bull is the 12th of each month. Rates are as follows:

Newsletter Ads:

$20 for business card size ad, per issue

There will be a maximum of 4 ads in each issue, and the ads will be published if space allows. Payments will be refunded if the ad is not published. Ads are also posted to the Web.


 

MISSING DONATION RECEIPTS?

If you have made a donation to HeCSC and haven’t received a tax receipt, please call the head office at 1-800-652-HEPC.


 

 

REPRINTS

Past articles are available at a low cost. For a list of articles and prices, write to the hepc.bull, via Darlene Morrow at 1203 Plateau Drive, N. Vancouver, BC, V7P 2J3, hepcbc@iforward.com


THANKS!

Victoria Chapter HeCSC acknowledges the personal donations, donations in kind and memorial donations received to date, and the following for discounts, donations of services, or equipment: Monk Office Supply. CFAX 1070 Radio, Apple Canada, Pacific Coast Net and Island Internet, Inc., Mid-Island Realty, Questar Holdings, Unity Business Machines Ltd., Microsoft of Canada, Jim Pattison Group, Society Press & Graphics, Paradon Computers, and CompuSmart. We also wish to acknowledge an anonymous agency which has generously supplied us with government surplus computer equipment. Special thanks: JJ Camp


 

HAVE YOU MADE OUT YOUR WILL? Everyone needs one!


 

HOW TO REACH US:

EDITORS: TEL: (250) 388-4311

Joan King-Diemecke joan_king@bc.sympatico.c a

Darlene Morrow hepcbc@home.com http://www.geocities.com/HotSprings/5670

C.D. Mazoff squeeky@pacificcoast.net

VICTORIA HeCSC OFFICE: TEL: (250) 388-4311

hepcvic@pacificcoast.net

http://www.pacificcoast.net/~hepcvic/hepcvic~1.htm

 

 

Reminder: Any change of address, phone number or postal code, please let your phone contact (in Victoria) or your chapter secretary know ASAP

HeCSC Victoria Tel. (250) 388-4311 hepcvic@pacificcoast.net


 

SQUEEKY’S CORNER

This Month in Victoria

This last month has been incredibly busy, and I’m glad to say that our membership is growing and participation is increasing. Thanks to all who continue to help.

For those of you who missed it, this last month JJ Camp and Bruce Lemer came to the meeting to explain the compensation framework agreement to the members. It was a good meeting and lots of questions were asked and answered. Because of the importance of the issue, our Steering Committee decided to find out exactly what everyone actually thought. Joan and the phone committee called just about all the transfused members to get their opinions, and the results were posted to the HepCAN list and to HeCSC in Toronto. We are very pleased to say that your opinions really mattered and that the national board of directors listened to your voices when they made a public statement rejecting the proposed agreement.

We have recently been able to publish an updated version of Peppermint Patti’s FAQ. These 84 page books are spiral bound and contain every thing you wanted to know about HCV but were afraid to ask. We are asking for a $7 donation + postage. As well, we have managed to print a series of 4 pamphlets (sex, drugs, pregnancy, beauty industry), and hope to distribute them shortly. They are, however, expensive, and we hope that we can get another grant to continue the work.

We have also been quite busy writing letters, and encourage you to keep up the good work yourselves. Peggy Daisley and Ron Thiel received replies from Preston Manning, and Ron Thiel had a letter published in the Globe & Mail, and possibly another one in the Canadian Medical Association Journal (CMAJ). Ron also emailed every politician in the land a copy of Dr. Brill-Edwards’ assessment of the tainted blood issue.

I have not been so lucky with my letters to Glen Clark and Penny Priddy, who have told us they are much too busy to speak to us—ever—and am waiting response to letters I wrote to the Deputy Minister of Health and to the BC College of Physicians and Surgeons about issuing an ibuprofen warning for persons with Hep C. Because they have not responded quickly, I have also sent out a press release to this effect.

This month I also held two information sessions for staff & others at the Mustard Seed Church and another at Wilkinson Road Jail with Joan and the Fitz. The response was excellent.

Also, Dave Fitzgerald and I officially set up a Disability Working Group with the Action Committee of Persons with Disabilities, so that our members could have more effective advocacy.

On January 25th, we held a special meeting with Jeff Potts of Health Canada, Hepatitis C Division, at the Royal Jubilee Hospital. Jeff explained that he does not speak for the Minister, but will report back his findings which will help distribute the 50 million dollars for hepatitis C announced by the Minister. He went on to say that this is federal money, and is intended to help the whole country over a period of 5 years. There were some monetary calculations discussed at this point. Jeff informed us that his purpose is to direct the federal funds and help put programs into effect. They want the money to flow as soon as possible, in tandem with the Treasury Board announcement on April 1st.

This month of course, was also Valentine’s day—on which I bought Joan some flowers and she even offered me a kiss.

This just in: "Reaper Sighted at the Victoria Conference Centre." Apparently Ron the Reaper crashed a Health Ministers’ conference posing as Daffy the Duck—a deed most fowl. A near riot ensued and he was charged with quackery. Last we heard our dashing friend was able to fly the coop and got away with yet another feather in his cap.

Until next time, Squeeky


 

LIVER BIOPSY & PATHOLOGY OF HEPATITIS C

by Natalie Rock BSN, RN.

Liver Biopsies are indicated when there is evidence of chronic hepatitis based on elevated enzyme levels 1.5 to 2 times the upper limit of normal for greater than six moths, if liver function tests are abnormal, if signs or symptoms of liver disease are present, and/or there is uncertainty about the diagnosis or disease activity. Liver biopsies are performed to assess the degree of activity (inflammation) and the extent of scarring (fibrosis and cirrhosis).

Microscopically the liver consists of units called lobules. Lobules consist of a central vein, radiating columns of liver cells, and portal tracts or triads. The portal triads consist of portal vein radicals, hepatic arterioles, and bile ducts. The intervening liver cells are supported by reticulin, and columns or spaces between the liver cells are referred to as sinusoids. The last row of cells adjacent to the portal triads is referred to as the limiting plate.

Hepatitis C, like other viruses causing hepatitis, results in the concentration of inflammatory cells in the liver, the destruction (necrosis) of liver cells, and the formation of scar tissue or fibrosis (collagen). The inflammation starts in the portal triads which consists of portal veins, arterioles, and bile ducts. The inflammation may be limited to this area and not cause any damage. As the inflammation progresses, the inflammatory cells extend out into the liver lobule and start to involve the liver cell cords. The liver cells that are the first to be damaged are those cells forming the limiting plate, and as the cells are affected by the inflammation they die or become necrotic. This destruction of the limiting plate is referred to as piecemeal necrosis. As the inflammation extends further outward the liver cells in progression are destroyed (or become necrotic) and all that is left is the reticulin supporting structure. The reticulin fibres collapse against other reticulin, and the liver cells are replaced by scar tissue (collagen). As the collagen and collapsed reticulin extend from the portal area to the central vein, bridging fibrosis occurs. The bridging may be from portal triad to central vein, but as more liver cells become necrotic the bridging may extend from portal area to portal area and form a nodular pattern. Once this occurs cirrhosis is present. The liver cells may attempt to regenerate, but they do so in a nodular pattern because they are fixed inside the fibrous bands, this nodular regeneration is also a feature of cirrhosis. The fibrous tissue may effect the central vein, causing a restriction of the flow of blood with resultant "back pressure." This back pressure is transmitted further back into the portal vein with the resultant portal hypertension. The pressure in the portal vein is transmitted back into the veins draining the upper stomach and lower oesophagus and form oesophageal varices. These varices may burst with the result that a major haemorrhage occurs (there are procedures to deal with this complication such as banding or injecting the varices). As the liver cells are destroyed the ability of the liver to perform all its important functions becomes compromised and liver failure may start to occur.

In order to be as objective as possible, in order to standardise the interpretation of liver histology, and in order to determine the progression of hepatitis, a grading system for the inflammation and a staging system for the fibrosis has been developed. The system is as follows:

Portal inflammation:

Grade 0—no inflammatory cells

Grade 1—inflammatory cells limited to the portal triad with no piecemeal necrosis

Grade 2—inflammatory cells extending out from the portal triads with patchy piecemeal necrosis

Grade 3—heavy inflammation with marked piecemeal necrosis

Grade 4—inflammation and necrosis extending from the portal areas through the liver lobule

Lobular inflammation:

Grade 1— some inflammatory cells within the liver lobule but no obvious liver cell necrosis

Grade 2 —inflammatory cells in small clusters within the lobule with necrosis of some adjacent liver cells

Grade 3—heavy collections of inflammatory cells within the liver lobule with marked areas of liver cell necrosis

Grade 4—extensive inflammation throughout the whole of the liver lobule, merging with grade 4 inflammation from the portal triads.

Fibrosis:

Stage 0—no fibrosis

Stage 1—a small amount of fibrosis around the portal triad but not extending outwards

Stage 2—fibrosis tissue extending out from the portal areas but not reaching the central vein

Stage 3—fibrous bands extending from portal triad to central vein but not to other portal triads (portal to central bridging)

Stage 4—fibrous bands from portal areas to portal areas with the formation of cirrhosis (portal to portal bridging with nodular regeneration)

Liver cell cancer usually develops after the establishment of cirrhosis. The factors causing the development of liver cell cancer are not completely understood, but the nodular regeneration seems to play a part. Liver cell cancer may occur in only one area of the liver, but in 50% of people it occurs in more than one area and is said to be multifocal.

Other features that occur in the liver in chronic hepatitis C are fat deposition within the liver cells, collection or aggregates of inflammatory cells into what are termed "lymphoid follicles" and damage to the tiny bile ducts, termed the "bile duct lesions."


 

 NEW OFFICE IN PARKSVILLE

The new address for the Parksville/Qualicum Beach support group is 1-291 East Island Highway, Parksville, B.C. The phone number remains the same. This change came about because this group does not receive any government funding. Less than a month after volunteers announced the Allied Support Group might have to close its doors due to financial problems, Coast Realty group has stepped in to offer the charitable organisation free office space.

Manager Roland Wickett and his staff members have agreed to contribute a portion of their real estate commissions, and corporately they are making a monthly donation, as well as helping with the group’s accommodation expense.

The new location is located in the Coast Realty Insurance office on the Island Highway, across from Quality Foods, in Parksville, and features a reception area, along with two rooms. During evening meetings, the office’s board room will also be available for use.

Although this new facility is a bit smaller in size than the previous location, the services provided and information available will not change.

Gary Joneson


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