MONKEYING AROUND

From: AOLNews@aol.com

Most Effective Treatment for Hepatitis C May Lie in Body's Own Immune System

STANFORD, Calif.--(BUSINESS WIRE)--April 22, 1999

In a study funded by Chiron Corporation and National Institutes of Health, researchers Stewart Cooper and other colleagues from Stanford University School of Medicine studied six chimpanzees infected with hepatitis C. Four of the chimps developed chronic infection, but the other two seem to have rid themselves of the virus after three months by their own immune systems’ reactions. A year and a half later, the two chimps were still virus-free. By studying these chimpanzees, the researchers have found that it is critical for the cells of the immune system to wage a broad assault at the earliest stages of the infection to successfully ward off the virus.

"Only 15 to 20 percent of people seem capable of terminating hepatitis C virus infection naturally—that means at least 80 percent have inadequate defense against it and become chronically infected," said Dr. Cooper, author of the study reported in the April issue of the journal Immunity. "By uncovering how the body is naturally capable of fighting off the infection, we now have a rational target for vaccine development."

When Cooper and his colleagues studied the T-cells from the livers of the chimpanzees, they found an important difference between the cells of the infected chimps and those of the animals who overcame the virus. T-cells from the two chimps that had beaten the virus had gone to work early in the infection. T-cells from the chimps that developed chronic hepatitis C had a delayed response, and the T-cells attacked more limited parts of the virus and utilised fewer of the body's immunological defense molecules.

"These results suggest that unless a certain threshold of T-cell response is achieved during acute hepatitis, infection is likely to persist," said Cooper.

The study has helped show a robust T-cell response over an antibody response, at the time of initial infection is vital. Earlier thinking held that antibodies played an important role, but the Cooper study seems to show that it is the T-cells that are critical in defeating hepatitis C. Knowing this is important in developing a vaccine against the disease.

Efforts to find a treatment have been hampered by the fact that the virus will not grow in liver cells maintained outside the body, and by the fact that the only animal model for hepatitis C is the chimpanzee, which has an immune system almost identical to a human’s. Some people seem to have overcome hepatitis C infection naturally, however these people are difficult to find and haven't been studied in detail. Thanks to his animal research, Cooper has the methods to go back and study the immune responses of people who have spontaneously rid themselves of hepatitis C virus.

CONTACT:

Stanford University Medical Center

Stewart Cooper, MD, 650/723-5469 (For Comment)

http://www-med.stanford.edu/center/communications

VACCINE WOES

by Joan King-Diemecke

I had been hearing some talk on the various Hep C internet lists about people not responding to Hep A and B vaccines, which we know are vital for us. (You do know you are supposed to get vaccinated, right?) So I decided to ask my doctor if he could check to see if my vaccines "took." He said that he could most definitely check, and did so. To our surprise and horror, I found out that in spite of taking the whole series of both vaccines, I was not immune to either. Was this due to my being on interferon at the time of my vaccination, or to the fact that I have hepatitis C? Thus began my investigation.

I posted to the HepCAN list, asking for any information people had, and received some interesting comments. One person mentioned (thanks, Ken) that when he was vaccinated at work, two of his co-workers did not "convert." (I don’t know if they had Hep C.) I came across one article, thanks to this same person, which spoke of giving interferon to improve the response to the vaccine [Infect Med 16(3):205-210, 1999.]. I also received news from Leslie reminding me that there was an article out by a doctor at Walter Reed which says that those on interferon treatment should not be vaccinated because the vaccine won’t take (see Leslie’s article, hepc.bull 12/99, p 7), and I did see a couple of medical articles that spoke about people with hepatitis C often not responding to the vaccines.

Someone from Schering Canada was kind enough to get back to me by phone about my questions. He explained to me that the vaccines are not supposed to be taken with immunosuppressants, but that interferon is not an immunosuppressant. It is an immune system modifier. He also told me that they simply do not know what the combined effects of the vaccines and interferon are. So I guess we have to tell them.

Natalie Rock, from Dr. Anderson's office, got back to me, and said they have had several people who have been on the trials who have had their Hep A and/or B vaccines, and have been tested and the vaccines haven't "taken," like me. What they are doing is having the patients continue with the interferon, if they are on it, have one booster (of each, if both are needed), and get tested again in 3 months. If the patient still shows no immunity, then they have them get revaccinated with the whole series, but with a different brand of vaccine. She also says that no one really knows, which is what the Schering rep told me, too. The moral: Get tested to see if the vaccine took. And if you haven’t been vaccinated, please do so. Good luck. (In Victoria, both vaccines can be obtained free of charge from the CDC on Cook Street through your family doctor, if you have hepatitis C.)

From the Helix Site, Marnie L. Peterson, PharmD

http://12.4.5.24/helix/resc/trends/pharmacy/aug97_in_rereview/ce_text.htm

About the hepatitis A vaccine: Persons receiving immunosuppressive therapy or having other immunodeficiencies may have a diminished antibody response to active immunization. These persons may require additional doses of vaccine or may be deferred from vaccination and may require passive immunization with IG.

About the hepatitis B vaccine: Boosters should be given if antibody levels decline below 10 mIU/mL. Dose 40 mcg (2x20 mcg.)

From "Ask the Experts" at the Immunization Action Coalition, by Linda A. Moyer,

RN, and Harold S. Margolis, MD

http://www.immunize.org/catg.d/p2021a.htm

"…hepatitis A vaccine should be given to all susceptible patients with chronic liver disease. Hepatitis A vaccine is very immunogenic and the patient's diminished immune status due to interferon should not affect the immunogenicity and effectiveness of the vaccine, although there are no data to support that statement. Studies still need to be done to address this issue. Current assays are generally not adequate for hepatitis A postvaccination testing as protective levels of antibody produced by vaccination may be at a level that the test cannot detect."

"…interferon treatment should not preclude hepatitis B vaccination. Postvaccination testing, however, should be done 1-2 months after the last dose of hepatitis B vaccine to assure adequate protection."

 

IN MEMORY OF PAMELA by Darlene Morrow

 

I wanted to say something thought provoking. I wanted to say something that would make some kind of sense of the chaos. I can't. Nothing works.

We have lost another one of our members. You may remember 'Pamela from Vancouver's' story in the February ‘99 issue of the hepc.bull. She was diagnosed with Non-A/Non-B hepatitis early in 1988 following surgery that had required a blood transfusion. She felt great after recovery from the ordeal and was told, like so many of us, that it was nothing to worry about. In 1992 she was told that it was Hep C, but that she was a carrier. Between then and early 1998, she received no treatment, no counseling, no help. She didn't feel sick so there was no pressure from her to further investigate. But then her enzymes rose above the magic marker of 1.5x normal and she was sent to a specialist. Her liver biopsy in October 1998 showed cirrhosis stage 3-4 and autoimmune hepatitis.

Pamela died last month. I only met her once, but talked to her several times on the phone. She was so young— only 38. She was so angry with the medical profession for letting this happen to her. I hope she finds peace now in her final resting place.

The ignorance that let Pamela die must STOP. How many other people are walking around with time bombs ticking away? We have to spread awareness of this disease. Testing for antibodies for HCV is not expensive. It needs to become routine. The BC CDC estimates that 40,000 people in BC have Hep C. Many of those don't know. How many more Pamelas will we see?

 

SPECIAL THANKS

This month, I'd like to take a moment to thank some of our givers. Givers aren’t always those who give cash; sometimes givers give products, time or services. This month we were quite fortunate in receiving a large cash gift from Schering Canada in order to continue publishing the bulletin, and for that we are truly grateful. But we also received other gifts. I would like to thank Nickolas Burger and the rest of the staff at CompuSmart in Victoria for continually being there to help us solve computer problems, and at no cost to us. In the last month, I had to get an older machine internet ready and had no documentation for the modem settings; the staff spent a good hour figuring it out for me. And last week, Nickolas spent a good half-hour helping me solve a problem with our Webpage—and all for free. The staff at CompuSmart know we don't have money to buy the latest equipment, and I'm constantly bugging them; but they help us anyways. I'd also like to thank Bernie Lambert at Paradon Computers for helping us rescue our older donated computers, for waiving the labour charges, and always trying to help us cut costs, and also Barbara McVagh of London Life for donating a superb Xerox copier—something really handy for printing out fliers for the Fun Run. Of course, a very special thanks to Rick Wiertz of AM 900 who has adopted our Fun Run as a personal project, and to Fatima Jones for organising the whole thing in the first place. Last thanks to all the volunteers who have helped us this month, and a special one to Judith Fry for keeping the office in one piece. What else can I say, but thank you. squeeky

COMING UP IN BC:

Castlegar/Grand Forks/Trail Contact: Robin, 365-6137

Comox Valley Liver Disease Support Group Meetings: Third Tuesday of each month, 7 PM, . NEXT MEETING: July 15th. Contact: Ingrid or Nicky, 335-9167 or Jeanne Russell ebus96@island.net for location.

Cowichan Valley Hepatitis C Support Services is in desperate need of a meeting place. Contact: Debbie, 748-5450, dduncan@olink.net , or Leah, 748-3432, r._attig@bc.sympatico.ca

Downtown Eastside Hep C Support Group Meetings: Wednesdays 7:30-9:30 PM, Carnegie Centre 401 Main St., Vancouver. Contact Carolyn: momma@vcn.bc.ca

Enderby HepCURE Meetings: Last Sunday of each month 2-4 PM, for High Tea, The Raven Gallery, 701 George St. NO MEETING THIS MONTH. Contact: Marjorie, 558-7488. www.junction.net/hepcure/index.html

Kelowna HeCSC Meetings: Last Saturday of each month, 1-3 PM, Rose Avenue Education Room in Kelowna General Hospital. NEXT MEETING: July 31st. Contact: Michael, 860-8178 or eriseley@bcinternet.com

Kootenay Boundary Meetings: Second and fourth Tuesday of each month, 7 PM, 1159 Pine Ave. upstairs from Lordco auto parts. NEXT MEETINGS: July 13th and 27th. Contact: Brian, 368-1141, k9@wkpowerlink.com or Pat, 364-1555

Mid Island Hepatitis C Society Meetings: Second Thursday of each month, 7 PM, Health Unit-Central Vancouver Island, 1665 Grant St., Nanaimo. NEXT MEETING: July 8th. Contact: Susan, 245-7654, hepc@nanaimo.ark.com

New Westminster Support Group Meetings: Second Monday of each month, 7:00-8:30 PM, First Nation's Urban Community Society, Suite 301-668 Carnarvon Street, New Westminster. NEXT MEETING: July 12th. Contact Dianne Morrissettie, 525-3790.

Parksville/Qualicum 1-291 East Island Hwy, Parksville. Open daily from 9AM to 4 PM, M-F. Contact: (250) 248-5551. dbamford@island.net

Penticton HeCSC Meetings: Second Wednesday of each month, 7-9 PM, Penticton Health Unit, Board rooms. NEXT MEETING: July 14th. Contact: Leslie, 490-9054, bchepc@bc.sympatico.ca

Prince Rupert Contact: April, 627-7083.

Princeton Meetings: Second Saturday of each Month, 2 PM, Health Unit, 47 Harold St. NEXT MEETING: July 10th. Contact: Brad, 295-6510, citizenk@nethop.net

Quesnel Contact: Elaine, 992-3640.

Richmond Meetings: Fourth Tuesday of each month, 7 to 9 PM, Westminster Health Unit, 7000 Westminster Hwy, Main Floor, Room 3. NEXT MEETING: July 27th. Contact: Carmel Tanner at Richmond Health Unit, 276-4069.

Sunshine Coast Sunshine Coast Hepatitis C Support Group will be closed for the Summer months. Our next meeting will start up on September 2nd. For more information contact Karen, 885-6413, or e-mail karen_felske@sunshine.net . See you all in September.

Vancouver CLF Meetings: Second Thursday of each month, 7:30 PM, Nurses’ Residence of VGH (12th and Heather). Signs will direct you. NEXT MEETING: July 8th. Contact: the CLF, 681-4588 or Darlene N, 685-3813, djnicol@ibm.net or hepcbc@canada.com , or Herb, 241-7766, HMoeller@compuserve.com

Vancouver Support Group NEXT MEETING: Date to be confirmed. CDC Building, 12th and Ash. 1-3 PM. Contact: Darlene Nicolaas, 685-3813, djnicol@ibm.net , or Darlene Morrow, 987-7378, hepcbc@home.com

Vernon HepCURE Meetings: 1st Tuesday 12-2 PM and 3rd Tuesday of each month, 6-8 PM, the People Place, 3402-27th Ave. NO MEETINGS THIS MONTH: July 6th and July 20th. Contact: Marjorie, 558-7488. www.junction.net/hepcure/index.html

Vernon HEPLIFE Meetings: 2nd and 4th Wednesday of each month, 10 AM-1 PM, The People Place, 3402-27th Ave. NEXT MEETINGS: July 14th and July 28th. Contact: Sharon, 542-3092. sggrant@attcanada.net

Victoria HeCSC Meetings: Last Wednesday of each month, 1-3 PM and at 7-9 PM, Steve Orcherton’s Office, 2736 Quadra (at Hillside) NEXT MEETING: July 28th. Contact: 388-4311. hepcvic@pacificcoast.net

White Rock Support Group: Meeting Room #2, Peace Arch Hospital. Contact Lisa Peterson at 538-8704.

DONATION FORM

Please fill out & include a cheque made out to HeCSC - Victoria Chapter. Send to

Hepatitis C Society of Canada

Victoria Chapter

926 View St.

Victoria, BC V8V 3L5

Name _____________________________

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One Year Subscription Donation $10.00

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Okanagan HeCSC ________[]

Other __________________[]

"I cannot afford to subscribe at this time, but I would like to receive the newsletter.

I am applying for a grant." ____[]

"I would like to make a donation so that others may receive the newsletter without charge" ______[]

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

DISCLAIMER The hepc.bull cannot 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 editors, of HeCSC or of any other group.

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.

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@canada.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 JJ Camp, David Klein, Bruce Lemer, David Anderson, Steve Orcherton, Barbara McVagh, United Commercial Travelers, PECSF, CFAX 1070 Radio, Pacific Coast Net, Island Internet, Inc., Microsoft of Canada, Jim Pattison Group, Paradon Computers, and CompuSmart. We also wish to acknowledge an anonymous agency which has generously supplied us with government surplus computer equipment, London Life, Uncle Dave and some wonderful anonymous donors.

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

Contact 1-800-652-4372 or (416) 979-5855

 

HOW TO REACH US

EDITORS TEL (250) 388-4311

Joan King-Diemecke joan_king@bc.sympatico.ca

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

subscribe-hepcan@egroups .com

 

SQUEEKY’S CORNER

I

The Editors, hepc.bull

Like many of you I have been attending meetings, reading the hepc.bull, and showing up at rallies without much thought about how or who was responsible for the organising of all these events. I decided to get more involved a few months ago and I am now completely in awe of the few people who seem to do all the work for the Victoria Chapter. You cannot possibly know how lucky you are in your choices when you elected the steering committee. They are completely dedicated to helping all those who have been unlucky enough to contract hepatitis C (no matter how).

However, unlike the majority of the members, they commit themselves every day to educate, inform, solace and support, not only the victims of this insidious disease, but the general public, politicians and the medical community. What is more, they are doing so with very limited funds. Another fact is that they are also suffering from the effects of Hep C—the insomnia, itches, aches, pains, exhaustion. You name the problem and they probably know the symptoms first hand.

The reason I am writing is to request that all the members of Victoria Chapter consider how you can help your committee members. There are several events, ongoing and onetime, scheduled for the coming months which require a lot of help. The HepFest in July, the hepc.bull monthly, fundraisers like the cookbook, staffing the office, all need your support and assistance. Surely, there is something every one of you can do. I do not think that an hour or two a month is too much to ask of you to ensure that the good works of the committee continue and do not die because of burnout due to lack of support.

A volunteer or volunteers are desperately needed to help with the hepc.bull. In case you didn’t know, David, Joan and Darlene are responsible for every step of the process of writing, editing, publishing and mailing this bulletin. It does not appear in its very professional form because someone is paid to do it. It is a labour of love by these wonderful people. Maybe you cannot write or do research, but maybe you can fold and stuff and stick on address labels. Maybe you can look after picking up the printed copies and bring them to the office for completion. Maybe you can take care of the mailing, which David has been doing pretty well on his own. It is organised, but many more people are needed each month to make sure it goes out on time. Think about it. Wouldn’t it be nice to be part of this worthwhile project? By the way, it serves every province in Canada. It is the only publication of its kind as far as I know.

The HepFest, scheduled for July 16th to 18th in Victoria, is another project that will need willing hands if it is to be a success. There will something of interest for everyone. A large yard sale is planned. Organisers are needed. Do you like buying and selling? Offer your services for this weekend. A fun run is in the works. Plan to attend. Get an able-bodied person to push your wheelchair, hospital bed, wagon, whatever. Sign up sponsors. Dress in silly costumes. Have some fun. There will be a potluck. Cook up a storm. Please!

Judith Fry is the office manager of our new office and she is pretty well holding the fort by herself. It does not take physical health to answer the phone for our Society and try to help others in the same boat. There are friendly folks working in the same office, coffee and goodies and conversation. It is more a visit than work. Put your name down for a few hours each week. You will be glad you did.

Can’t get out? You certainly can use the phone. Joan could use phoners to let members know about upcoming events. It only takes a half-hour a month of your time. It is something anyone of us can do.

I do not wish to berate anyone. I only wish to educate you as to the running of this wonderful organisation. Victoria Chapter HeCSC is the only line of defence and education for all the sufferers of this disease. DO NOT let it fail for lack of support. Every one of you can help in some way. I am begging you to please, please, please offer your support in any way you can.

Arlene Darlington

HepC BC

HepCTRG

HepC VIC

June Table of Contents