June 1998 - hepc.bull
Canada's Hepatitis C Newsletter
FROM HeCSC HQ
The National Office has certainly been affected by the surge in
the public profile of Hepatitis C in the last few weeks. Media
calls have flooded in almost on a daily basis. Our membership
also continues to rise. It now stands at 1,907. We hear that the
chapters are also seeing an increase in attendance at meetings.
We have visited Thunder Bay, Ottawa and Kitchener recently. We
look forward to seeing more people across the country in the
coming months.
We are also looking forward to seeing members at the end of May
at the Annual General Meeting and Conference. The theme is
“Solving the Hepatitis C Puzzle.” While we do not
expect to do this in one weekend, we should get off to a good
start. We’re expecting the usual interest in treatment
developments from the liver specialists, alternative treatments
and the advocacy issues.
In May, we were invited to attend the meeting of the Health
Ministers in Ottawa to discuss the compensation issue. Jeremy
Beaty and Tracy Goegan from the board and I represented the
Society. If you would like a copy of Jeremy’s presentation
to the Ministers, please call us at 1-(800)-652-4372 or (416)
979-5855.
We have achieved a real peak in media coverage in May, with lead
stories on CBC National and Magazine, CTV News, and daily
newspaper coverage—many, front pages. Our board members and
chapter chairs and members have been doing a great job, either
representing the society or telling their stories.
Congratulations as well to members Chris Landry from Markham,
Ontario, whose essay appeared in Time magazine Canadian Edition
dated May 25, and Derek Marchand, whose interview was in the New
York Times on May 8.
That’s it for now. Keep up the good work everyone.
Tim McClemont
Executive Director
A Plea for Sanity
by Darlene Morrow
With all the issues of compensation for people with HCV, it has
become very topical for the media to explore HCV. And because we
must strike while the iron is hot, I find myself giving more
interviews than I am used to. And in these interviews I hear
myself saying: “The physicians on the front line are not
equipped to deal with hepatitis C on the scale that we see today.
These physicians need more education on HCV and all that that
entails.” The interviewers are surprised. My story began in
1994. They think that by now things must have changed. And I
think—it has been four years—maybe they are right.
Maybe we can relax.
But that night the telephone rings. I hear a voice that is
gripped by panic and fear. Open heart surgery in 1986 lead to
HCV. And now this person has been coughing up blood! He was sent
home from the hospital after being told that the bleeding had
stopped, and that it had nothing to do with HCV.
In the very best-case scenario this individual was not reassured.
He was sent home without his fears dispelled. He was not told why
the bleed did not have anything to do with HCV. And in the very
worst-case scenario, could portal hypertension have reared its
ugly head?
I hear this voice on the phone and I wonder, what can I do? I try
to reassure him—even though I can’t! I send him medical
information and give him more phone numbers. I tell him what I
would do. I feel ineffectual. Whatever I do—it is not
enough. A failing medical system forces me to take on this
ill-fitting role. It may have been four years but has anything
really changed?
These people thank me profusely. I didn’t do anything YOU
wouldn’t have done. Any of US wouldn’t have done. The
small act of kindness seems monumental because nothing else has
been done. Or whatever has been done has been insufficient.
People are still dropped the bombshell on the telephone that they
have HCV. People are still told that their symptoms have nothing
to do with HCV. People are not brought into the decision-making
process that governs their treatment.
We must share the blame. We have helped foster this
patient-physician relationship. But it is no longer acceptable.
We MUST tear it down and rebuild it. This relationship must be
built on mutual respect, trust, and compassion. Physicians and
patients must work together to ensure that the very best choices
are made in their health care.
Physicians must keep abreast of new developments in HCV. All the
ramifications and complications that arise as a result of HCV are
not known today. We must ALL recognise that we know very little
about HCV. But WE are the patients. WE experience this disease.
The lines of communication must be kept open if we are to learn
anything.
This particular story has a happy ending. After receiving the
information that was sent, the person took those documents to his
physician. To credit his physician, he was receptive to the
information. And the individual was immediately checked into the
hospital and is presently undergoing tests.
But I cannot relax. And you cannot relax. We must do whatever we
can to enforce education and foster an understanding of HCV. And
the Canadian Liver Foundation (CLF) can help us out. If you feel
that a physician might benefit from reading educational
information about hepatitis C, here’s what you should do:
Call the CLF (681-4588 in Vancouver or 1- 800-856-7266 in BC) and
request a Patient Info Package on hepatitis C. Within this
package you will find a ten page document written by Dr. Jenny
Heathcote for physicians about the transmission, diagnosis, and
treatment of HCV. This document was prepared in late 1995/96.
Even though it is slightly dated, the information contained
within it is sound. An update of this version is currently
underway and will hopefully be ready by fall ’98.
COMING UP:
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: June 24th.
Penticton HeCSC Meetings: Third Thursday of every month, 7-9 PM,
Penticton Health Unit - Board rooms. NEXT MEETING: June 18th.
Kelowna HeCSC Meetings: Last Saturday of every month, 1-3 PM,
Rose Avenue Education Room in Kelowna General Hospital. NEXT
MEETING: June 27th.
Nanaimo HeCSC Meetings: Second Thursday of every month, 7 PM,
Health Unit-Central Vancouver Island, 1665 Grant St. NEXT
MEETING: June 11th.
Vancouver CLF Support Group Meetings: Second Thursday of every
month, 7:30 PM, Nurses’ Residence of VGH (12th and Heather).
There should be signs directing you to the right room. NEXT
MEETING: June 11th. Contact the CLF for more info at 681-4588 or
Herb at 241-7766.
Sunshine Coast Support Group Meetings: First Thursday of each
month, 7:30 PM, Coast Garibaldi Health Unit in Gibsons. NEXT
MEETING: June 4th. Contact Carol for more information: 886-4298
or email Carol.
HOW TO REACH US:
EDITORS
TEL:(250) 388-4311 Joan
King-Diemecke
Darlene Morrow
HepC BC
C.D. Mazoff
VICTORIA HeCSC OFFICE:
TEL:(250) 388-4311 Website
PENTICTON HeCSC:
LESLIE GIBBENHUCK
TEL:(250)490-9054
KELOWNA HeCSC:
ELAINE RISELY
TEL:(250)768-3573
CASTLEGAR/GRAND FORKS/TRAIL:
ROBIN TOMLIN TEL:(250)365-6137
NALA PAQU HeCSC:
RIA KLOMP TEL:(250)248-6072 (Parksville)
TED KILLOUG TEL:(250)752-1718 Gary (Qualicum Beach)
HELEN HUBBARD TEL:(250) 245-8759
(Ladysmith/Nanaimo)
DISCLAIMER:
HeCSS cannot endorse any physician, product or treatment. Any
guests invited to our group 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 organization.
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.
The deadline for any contributions of hepc.bull
is the 22nd of each month. Please contact:
Joan King-Diemecke at Tel (250) 388-4311,
Joan King-Diemecke,
Darlene Morrow at 1203 Plateau Drive, N. Vancouver, BC, V7P 2J3, Darlene Morrow
or
C.D. Mazoff
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
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Newsletter Ads:
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The Bulletin Grows
The hepcBC.bull has been very successful this year. Our
subscription base has increased and now reaches Canada-wide. In
order to reflect this national focus we will shift the emphasis
away from BC and revert to the newsletter’s original name:
the hepc.bull.
We hope that you have enjoyed your subscription to the Bulletin
and that it has provided you with up-to- date information about
hepatitis C. We need your continued support, since the cost of
your membership in the Hepatitis C Society of Canada does not
cover the subscription/donation to the Bulletin. If you haven't
already done so, please fill out the subscription form and mail
in your $10 to Victoria.
When your subscription renewal comes due, please forward us your
cheque, so that we may continue to provide you with the very
latest on HCV.
FROM THE OKANAGAN
Editor’s note: Leslie’s submission to the hepc.bull has
been put on hold this month due to some controversy. You may read
it on the internet at:
HepC BC
FUNDRAISER:
We are offering Tupperware to all our readers. For the next
month, 15% of all orders will go to benefit the Victoria Chapter
of the Hepatitis C Society of Canada. The more we order, the more
we benefit.
Please call & mention Hep C
Caroline Mah Tel: 386-9260
CANADIAN LIVER FOUNDATION UPDATE
The CLF is looking for volunteers for their Victoria Chapter to
help raise awareness of liver disease.
Volunteers are needed to assist in the development of support
groups in Kamloops.
Please call the CLF for more info.
Phone: 604.681.4588 Fax: 604.681.6067
Toll Free in BC: 1.800.856.7266
SQUEEKY’S CORNER
MY TAKE
Like most of you I have been uplifted by the recent media
response to the plight of transfused victims of hepatitis C who
have clearly been denied justice and compassion. And like many of
you I continue to be frustrated by the incredible indecision and
evasion of responsibility on the part of our elected officials.
But while we should be encouraged by the flurry of media
attention, and even by the promise of a settlement somewhere on
the horizon, we should also be aware that the scope of the
hepatitis C epidemic is much larger than the blood scandal and
that “compensation” does not necessarily mean a
“cure” or adequate monies for reasearch. And, without a
cure, the fact remains that many of us will, in the near future,
succumb to the disabling effects of the disease, and even to an
untimely demise.
Despite the recent publicity, in general the public is not aware
that over 85% of all people who contract the disease will have it
for life; that there is no such thing as a healthy carrier state;
that the current treatment with Alpha 2b Interferon has a very
high relapse rate, such that in the end only from 8-15% of those
treated can be considered sustained responders; that the cost of
treatment is beyond the means of many persons with the disease;
and that the treatment can cause irreversible thryroid, rheumatic
and vascular disease as well as autoimmune disorders such as
lupus. As well, and most importantly, the seriousness of the
illness continues to be downplayed by many in the medical
profession, and many sufferers who are seriously ill are denied
treatment or access to disability benefits because their
experiences (fatigue, sleep disorders, lassitude, liver pain) are
discounted by doctors needed to sign approval forms for
government subsidized pension benefits or treatment regimes.
Many Canadians suffer from hepatitis C—many more than we may
wish to acknowlege. Recent studies suggest that the LCDC
statistics of 1- 1.5% of the general population (i.e., not just
transfused victims) are much too low and that a more accurate
figure would be in the 3.5-5% range. We also know that many
people continue to be infected by a blood supply that is clearly
at risk, but there is unfortunately little in place in terms of a
national strategy for dealing with what many medical experts are
calling the next great epidemic. Hepatitis C is now referred to
as “the silent epidemic” or “the silent
killer,” perhaps not only because of the way in which it
attacks its victims, but also because of the public and political
response to this looming crisis. Often the disease is portrayed
as a moral issue—a “lifestyle” disease—and
its sufferers as reprobates, drug users and the sexually deviant,
when in fact we know that as many as 40% of those who suffer from
hepatitis C have no known risk factors and others are clearly the
innocent victims of a national strategy gone horribly wrong.
Hepatitis C will not go away; it is only going to get worse. As
an article in The New Yorker, May 11, 1998 pointed out, “the
study of hepatitis C is ... seriously underfunded. Last year, the
National Institutes of Health spent about sixteen hundred dollars
per infected person on H.I.V. research, and great advances have
been made in fighting that virus; for hepatitis C, however, the
N.I.H. spent only six dollars per infected person.” Funding
in Canada for research into HCV is proportionately less.
I know of many who are very worried about the cancellation of
Ribavirin trials in the USA, and the possibility that the drug
may be denied us here in Canada. I know of many who cannot get
treatment because they earn too much, and must wait until they
are bankrupted by the disease so that Medicare will cover the
costs. But even then there are no guarantees, since many doctors
in Canada do not favour treatment of an illness that they
percieve as no more that a mosquito bite, while others are tired
of fighting a government whose bottom line is profit and not
people.
What Can We Do?
Many of you are probably very tired: tired from the hepatitis,
tired of being ill, and tired of fighting the incredible
stupidity and greed around us. But fight we must. And what we
must fight for is, at bottom line, our very lives. The medical
system in this country was originally designed to protect us and
our health. While treatments such as lymphoblastoid interferon
and thymosin, or ribavirin and other drugs are out there, they
are apparently not out there for us—those who need them.
This too is a travesty of justice and a wrong that should and
must be righted!
So, the next time you speak to the media, or fax or email your
local MP, don’t forget that what we are fighting for is much
larger than merely compensation. What we are and should be
fighting for is a cure for this insidious disease, and, to that
end, vastly increased funding for research as part of a national
strategy on hepatitis C.
C.D. Mazoff
Lactoferrin Markedly
Inhibits Hepatitis C Virus Infection in Cultured Human
Hepatocytes.
Ikeda M, Sugiyama K, Tanaka T, Tanaka K, Sekihara H, Shimotohno
K, Kato N
Virology Division, National Cancer Center Research Institute,
Chuo-ku, 104
[Record supplied by publisher]
We found that bovine lactoferrin (bLF), a milk protein belonging
to the iron transporter family, effectively prevented hepatitis C
virus (HCV) infection in cultured human hepatocytes (PH5CH8), a
cell line susceptibleto HCV infection and supportive of HCV
replication. Because preincubation of HCV with bLF was required
to prevent the infection of HCV to the cells, and preincubation
of bLF with the cells showed no inhibitory effect on HCV
infection, we demonstrated that the anti-HCV activity of bLF was
due to the interaction of bLF with HCV, but not due to the
interaction of bLF with the cells. We further found that human
lactoferrin also had anti-HCV activity, but bovine transferrin,
the other member of the iron transporter family, did not have
anti-HCV activity. Our findings suggest that lactoferrin is one
of candidates for an anti-HCV reagent that will be well-tolerated
and effective in the treatment of patients with chronic
hepatitis.
Biochem Biophys Res Commun 1998 Apr 17;245(2):549-553
Copyright1998 Academic Press. PMID: 9571193
[Editors: Darlene Morrow,
David Mazoff & Joan Diemecke].
Copyright © 1998, 1997 by [HeCSC- Victoria Chapter
and HepC BC].
Revised: May 26, 1998.