Chapter development has increased dramatically in the last few months. You will note from the contact list in this issue that our numbers have doubled. We now have over 40 chapters and telephone support contacts. This speaks to the growing awareness of hepatitis C and our Society, as individuals are coming forward to volunteer to develop chapters in their communities.

Since July, our National Program Director, Hardeep Kaur, and I have visited chapters in Sudbury, Nanaimo, Victoria, Vancouver, Kelowna, Vernon, Sault St. Marie, York Region and Hamilton. Each Chapter has received either or both an introductory presentation about the Society or specific chapter program training, such as "How To Run A Support Group" or fundraising strategies.

We have also had a number of meetings with other groups to talk about research, such as the Canadian HIV Trials Network and the Canadian Liver Foundation. As well, we are in discussions with a couple of funders in both the public and private sectors about funding for an education of health care providers proposal we have developed. We also have submitted a proposal to the Population Health Fund of Health Canada for a youth project for those living with and affected by Hep C.

Earlier this year we applied to the City of Toronto for funding for a pilot project on co-infection of people with Hep C and HIV. That was not approved for this year. However, we sparked the interest of the local health department because they are now holding a workshop on this topic and have invited Hardeep to co-facilitate one of the working groups. Next year, we hope to obtain support for this type of project at both local and national levels by submitting proposals to each funder. Then the chapters could be involved.

The most significant development is the September 18 announcement of funding by the Health Minister Allan Rock for disease prevention, community-based support and research. We will be meeting with officials in November to begin planning how this funding will be distributed. This level of support will strengthen the Society, its chapters, and ultimately people living with and affected by Hep C.
 

NewsWire; Consensus Interferon Effective for Many Patients Who Have Failed Rebetron

PHILADELPHIA, Oct. 27 /PRNewswire/ -- The newest combination drug therapy may not be best for every hepatitis C patient. Many do not respond to Intron A (interferon alfa-2b) with ribavirin, and others may see viral counts lowered but relapse once treatment stops. Consensus interferon (Infergen from Amgen) is worth a closer look for these patients.

A study in the April issue of Hepatology showed that 58 percent of relapsers and 13-17 percent of non-responders achieved a sustained response after 48 weeks of treatment with high dose consensus interferon (15 micrograms three

times a week).

Interferons comprise a family of natural proteins produced by the body in response to viral infections. Consensus interferon is a man-made combination of parts of various interferon molecules that has five to ten times the biological activity of natural interferons in the laboratory.

Doctors are pioneering ways to maximize Infergen's effectiveness by modifying the dosing regimen approved by the FDA. Dr. William Boyd, Clinical Associate Professor of Medicine at South Florida School of Medicine and a hepatologist in private practice, uses Infergen with relapsers and with non- responders.

"Infergen is particularly successful with relapsers," says Boyd. "Based on the Hepatology study, they have a 55-60 percent chance of success if they have relapsed after treatment with Intron A."

For non-responders, Boyd prescribes 15 micrograms of Infergen three times a week, either initially or after acclimating the patient with 9 micrograms three times a week. "After three or four months at the higher dose without a dramatic drop in the viral load, we discuss increasing to 15 micrograms of Infergen daily."

Long-term therapy for patients with significant liver fibrosis is a new concept. "In the past, we considered hepatitis a viral illness," says Boyd. "If the virus didn't decrease after three or four months of treatment, we'd try something different or wait for better medicines. Now, the goal for patients with significant fibrosis is broader than alleviating the virus. The medicine may slow or even reverse fibrosis, so we plan on a year of treatment, even if the viral load doesn't decrease."

Doctors individualize therapy by weighing several factors: how the patient tolerates the medicine, how motivated the patient is, amount of fibrosis, and what has happened to the viral load. "We may arrive at different dosing schedules for different patients. We don't prescribe by cookbook as we did five years ago," says Boyd.

Dr. Boyd recommends patients find a doctor to spend time with them examining their viral load and biopsy results, their age, their tolerance of side effects, and their expected length of treatment before making treatment decisions. "Working with such a doctor is critical to developing commitment—no treatment works if the patient doesn't refill the prescription," he says.

Link to "Re-treatment of Chronic Hepatitis C with Consensus Interferon," Hepatology, April 1998, p.1136-1143, Vol. 27, No. 4:

Now is a good time for me as your Chairman to pause and reflect on what our Society has accomplished during the past year.

It was on Remembrance Day in 1997 that our founder Alan Powell, Executive Director Tim McClemont and I met with Allan Rock to present our Society’s issues for Canadians living with and affected by hepatitis C. Since that time, and particularly since the first compensation offer in March of this year, the federal and provincial governments have taken the following further actions:

v The Province of Ontario has pledged $200 million and the Province of Quebec $75 million to financially assist hepatitis C blood victims who were infected outside the 1986-90 time period.

v The federal government has committed $525 million (Allan Rock’s Regina announcement on September 18). If the provinces buy into these four federal programs they will match them with a further $350 million;

Ø improving blood safety through strengthening blood regulation and disease surveillance,

Ø helping cover medical expenses incurred by those infected through the blood system,

Ø developing programs, with our input, on hepatitis C disease prevention, community based support and research.

Ø conducting a "look-back/trace-back" study to identify people who have been infected through the blood system or who have donated infected blood.

v When all these are added together, the determined efforts of our Society have resulted in an additional $1.15 billion being directed to hepatitis C beyond the original compensation offer of $1.1 billion in March.

This is an extraordinary achievement, made possible by the leadership of our Society in concert with other non-profit organisations and concerned Canadians.

There have been many non-monetary achievements that are very significant as well:

v In the past 18 months our Society has contributed to raising awareness about hepatitis C among Canadians, from almost nothing to a level where now nine out of ten understand more about hepatitis C and support our Society’s goals for assisting those who are living with and affected by the virus.

v All opposition parties are united in their support for our cause. On September 22, 1998, we achieved a first by getting the four leaders, Preston Manning, Elsie Wayne, Gilles Duceppe and Alexa McDonough, to join us on Parliament Hill and speak in support of the needs of hepatitis C victims.

v The Senate unanimously supports compensating all those infected by the blood system.

v We are at the top of the list with the media, who invite us for comments on stories they are writing about hepatitis C and blood issues. The media always covers our advocacy at government conferences and our rallies. These events have occurred in Ottawa, Kananaskis, Whistler, Regina, Saskatoon, Shawinigan, Victoria and other cities. The Hepatitis C Society of Canada is seen to be a very professional and credible organisation in how it deals with the media.

v Our Society’s credibility was further confirmed in April and May this year with two opposition motions voted on in federal parliament. First, our advocacy influenced Reform to ask for a vote in favour of compensating all victims of the blood system. Second, the NDP motion asked that the "Hepatitis C Society of Canada be allowed to participate in the government Working Group". The first failed and the second passed.

v Your Society’s image is at an all time high among those working within the blood system and hepatitis C. We are invited to all events and conferences relating to these issues. Here are four recent examples;

Ø we actively participated on the steering committee to develop a conference on Research into Hepatitis C to be held in January next year,

Ø we are represented on the Consumer Advisory Group to Canadian Blood Services (the organisation that replaced the Red Cross) to provide consumer input to the new blood system,

Ø we were a member on the Expert Panel that revised downward the number of victims of transfused blood,

Ø we were an active participant in the "Hepatitis C: A Public Health Consensus Conference," which will result in significant recommendations in the areas of education, injection drug use, the blood supply, surveillance and public health.

It’s a time to celebrate with you our members the many successes achieved by the direct actions of our Society. We can be justifiably proud of our achievements. In time they will help make life easier for those with hepatitis C. All these achievements have come from our collective determination and advocacy. We have fought hard to right the wrongs of the past, to demand that our governments do the right thing and to treat all hepatitis C victims equally. It has been a collective effort by our members, countless volunteers and your Board of Directors. On behalf of 240,000 Canadians with hepatitis C I want to thank you all from the bottom of my heart.
 

National Foundation for Hepatitis-C, Red Deer/Sylvan Lake Chapter. Support group meetings every Thursday night 6-8 PM. at the Provincial Building, room 109. For more info, please call Shane at 1-(403) 887-4066 or 1-888-563-HEPC (4372)

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

Cowichan Valley Hepatitis C Support Services. Meetings: 1st Thursday 7-9 PM. 464 TCH. Duncan. NEXT MEETING: Dec. 3rd Contact: Debbie, 748-5450 or Leah 748-3432. vhepc@hotmail.com

Enderby HepCURE Meetings: Last Sunday of each month 2-4 PM, for High Tea, The Raven Gallery, 701 George St. NEXT MEETING: Dec. 27th. 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: Dec. 26th. Contact: Michael, 860-8178 or eriseley@bcinternet.com

Nanaimo HeCSC Meetings: Second Thursday of each month, 7 PM, Health Unit-Central Vancouver Island, 1665 Grant St. NEXT MEETING: Dec, 10th. Contact: Helen, 245-8759.

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: Dec. 14th. Contact Dianne Morrissettie, 525-3790.

Parksville/Qualicum 163 Memorial Street, Parksville. Open daily from 9AM to 4 PM, M-F. Contact: (250) 248-5551. dbamford@island.net

Penticton HeCSC Meetings: Third Thursday of each month, 7-9 PM, Penticton Health Unit, Board rooms. NEXT MEETING: Dec. 17th.. Contact: Leslie, 490-9054, bchepc@bc.sympatico.ca

Richmond: Meetings: Fourth Tuesday of each month, 7 to 9 PM, Westminster Health Unit, 7000 Westminster Hwy., main floor, room 3. NEXT MEETING: Dec. 22nd. Contact: Guy, 244-1704. guy@fatherswithoutchildren.com or Carmel at Richmond Health Unit, 279-4069.

Sunshine Coast Meetings: First Thursday of each month, 7:30 PM, Coast Garibaldi Health Unit in Gibsons. NEXT MEETING: Dec. 3rd. Guest Speaker will be Dr Loreen Dawson, Naturopathic Physician Contact: Karen, 885-6413. karen_felske@sunshine.net

Vancouver CLF Meetings: Second Thursday of each month, 7:30 PM, Nurses' Residence of VGH (12th and Heather). Signs will direct you. NEXT MEETING: Dec. 10th. Contact: the CLF, 681-4588 or Herb, 241-7766. HMoeller@compuserve.com

Vernon HepCURE Meetings: 1st Tuesday 12-2 PM and 3rd Tuesday of each month, 6-8 PM, the People Place, 3402-27th Ave. NEXT MEETINGS: Dec. 1st and 15th.. 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: Dec. 9th and 23rd.. Contact: Sharon, 542-3092. sgeegee@msn.com

Victoria HeCSC Meetings: Last Wednesday of each month, 1-3 PM, and again at 7-9 PM, St. John the Divine Church Lounge, 1611 Quadra St. (Entrance through the rear, marked Annex) NEXT MEETING: Members will be advised by phone. Regular meeting cancelled for Christmas. Contact: 388-4311. hepcvic@pacificcoast.net

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

EDITORS: TEL: (250) 388-4311

Well folks, it’s raining so hard outside, I’m beginning to feel like Noah! Sheesh. Well, at least it was a good summer. It was good in many ways: weather, activism and outreach. But now things have slowed down, and it’s time to think things through.

As you know, we tried and tried to get a new office here in Victoria, but it still hasn’t happened. And right now things are pretty up in the air because we shall be having our elections on November 25. Hopefully we will elect a competent steering committee to focus on positive and effective strategies for the new year.

Leslie Gibbenhuck has been invited to come to the election meeting to speak on the various projects she is currently involved with. I hope that she will provide us with detailed accounts of the activist movements in the US and the pending tainted blood law suit that is being launched there.

I don’t have much to say this time around. I would ask that you all take your participation in the Hepatitis C Society of Canada much more seriously and show up to your local meetings. I would also ask that you remember that unless we keep Hep C in the news, it’s going to die. We, here, equals you and me. And tired though we may be, we really don’t have any other choice—do we?

Combo Update:

As you may or may not know, I just started the Interferon-Ribavirin combo treatment about 3 weeks ago. I must say that unlike my first time on Interferon, this time is almost painless.

The first time I was on Interferon, I think I was much more ill all the way around. As you know, about 4 years ago I was so sick that I lived in a partial care residence for almost a year. But now, I am regaining a lot of my strength, although my liver damage has progressed significantly.

Because I reacted poorly to interferon the first time (bad sides and eventual "breakthrough") I decided not to take any chances this time around. I did some research on the hepc lists and decided that Zoloft was a good anti-depressant/anti-anxiety medication to take. I started taking it the first day of my treatment, and other than growing dehydration (along with occasional muscle spasms) from the Ribavirin, my response is very good. I now have days where the wooze that debilitated me is almost totally gone, and so are the fibromyalgia-related aches. They do show up periodically though, but not like before.

I do not yet know what my biochemical response is—i.e., whether the damned stuff is working; but I certainly can say that with the sides being what they are at the moment, it’s definitely worth the effort.

I hear that Gary Joneson is responding quite well to treatment, as are others in our community, and that the latest Hepatico results are not as promising as expected. We’ll give you more when we get more. For the latest information updates check out the list at hepcan@egroups.com.

All the best

There are two ongoing projects (both in the US) that are asking for Hepatitis C input. Both are looking for children with Hepatitis C.

One is for a "Faces of the Disease" poster. The poster project is being coordinated by Angelo Barbiere in San Francisco. He is a record producer who is also working on a concert and recording project to raise money for research.

The other is for children with Hepatitis C to make up 4 1/2 by 5 1/2 drawings of whatever they like and these pictures will be made up into cards. The cards are being coordinated by Sue Simon and she is from Edison, New Jersey

Anyone wishing to be involved with any of these projects can contact me at (250) 490-9054 or fax (250) 490-0620 or send them to me, Leslie Gibbenhuck, at PO Box 21058, Penticton, B.C. V2A 8K8.
 

Infergen is not licensed for use in Canada but Amgen is generously agreeing to supply it for free. Your physician or specialist must handle the negotiations. I have a contact number or he/she can get in touch with Natalie at Dr. Anderson's office: (604) 876-5122. (Please do not call this number yourself.) This is all thanks to the great work done by Craig and Janice in Windsor, Ontario.

Darlene
 

I am pleased to announce that the hepcsc list has now got a new name: HepCAN. The old list, sponsored in part by the Hepatitis C Society of Canada, Toronto, was good but had a few problems. First, although we had a reduced rate, we still had to pay for the service. Second, options such as archiving and digest were only available at an additional cost. Third, the new list goes back to the original preferred name (the original HepCAN list was started by Rudy, Joan, Darlene Morrow and Marjorie). And last, because there is no official sponsorship of the list, any hint of partisanship has disappeared. We hope that the new list will continue to encourage the open discussion and sharing of important information that were the hallmark features of the old hepcsc.

To subscribe to the new list just send a message to hepcan@egroups.com and I’ll get you signed up ASAP.

squeeky
 

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 checks payable to HeCSC Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 1611 Quadra St., Victoria, BC V8W 2L5. 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 check for a donation of $2, if you can afford it. Mail to the same address as above.

Disclaimer: The hepc.bull and/or HeCSC cannot be held responsible for any interaction between parties brought about by this column.
 
 

Ad No. 9

Hi, my name is Shane. I have HBV, HCV. I am 31 years old, 6'3 tall, 170 lbs. If you would like to see a photo of me and read my story, you can go to http://www.hepatitis-c.com, or check out the hepcvic site.

Seeking SF 25-45 for laughter, friendship, sharing and intimacy.

Shane (Alberta)
 
 

Ad No. 10

Respectful, respectable man (49) but looks younger who is very active and loves life. I'm 6' tall, 210 lbs. and considered nice looking, emotionally and financially secure and non-symptomatic. I won't let Hep C rule my life and am looking for a positive female to share a long-term happy life together. Vancouver area.
 
 

Ad No. 11

Companion(s) for some fun in the sun this winter. Prefer Eastern Caribbean—Belize, Cozumel, Cuba or ? SWF-61-Christian, healthy lifestyle, is looking for interested support group HCV person(s) to enjoy the great outdoors. Vancouver area.
 

Wiley, Briedi , Lam, and Layden, from the Department of Medicine at the University of Illinois at Chicago Medical Center report that a PCR test done on a patient at 48 hours after beginning standard therapy with interferon-alpha (IFN-alpha) (3 million IU) may predict response during six months of therapy. In the 17 patients who were positive by bDNA at 48 hr, all were positive at one and three months; and in the nine of nine who continued therapy for six months, there was no further decrease in HCV RNA levels. They concluded that serum RNA values 48 hrs after the first injection predict long-term response.

PMID: 9790449, UI: 99005109 Dig Dis Sci 1998 Oct;43(10):2169-72

On October 29, 1998, Chiron Corporation announced its discovery that a protein molecule (CD81) located on the surface of certain human cell types binds to the hepatitis C virus (HCV). This discovery could advance the development of new vaccines and therapeutics designed to prevent and treat this disease through targeted therapeutics and vaccines. It provides clues as to how HCV may penetrate and infect human cells.

BW HealthWire

On October 23, 1998, RiboTargets Ltd. and Molecular Simulations Inc. (MSI) announced the start of a collaboration to develop software specific to both modeling of RNA Targets and design of RNA targeted drugs.

"This collaboration is particularly exciting given recent advances in antisense drugs," said Dr. Scott Kahn, director of Life Science Product Marketing at MSI. "RiboTargets is pioneering the exploitation of RNA targets and we are delighted to play a role in extending simulation techniques to streamline their research," Kahn said.

RiboTargets has ongoing research programs in HIV, Hepatitis C, and the development of antibiotic compounds for the treatment of infections by drug-resistant pathogens.

MSI is a leading provider of molecular modeling, simulation, and informatics software to the world's foremost research and development facilities. Using MSI's innovative products, researchers can organize and analyze scientific data, share biological and chemical information, and develop novel compounds, materials, and processes.

BUSINESS WIRE