hepcBC.bull May 1998 Part 1
Inside this edition you will find:
1. Pharmacare Deductible to Increase
2. Letter to Jean Chretien from Jeremy Beaty
3. Letter to Allan Rock from Jeremy Beaty
4. SQUEEKY’S CORNER- April 20, 1998: Making a difference”
5. IVAN’S INPUT
6. IT'S TIME TO STEP INTO THE RING by Victoria McClelland
7. We would like you to meet Hopsy the HepC bunny by Audrey
Knight
8. New Technique for Designing Antivirals to Help HIV Patients
May Also
Help Hepatitis Patients
9. Legal Fees by Phoebe McCulloch
10. CLASS ACTION SUITS, TRACEBACK PROCEDURES and TRACEBACK
INQUIRIES
11. Class Action/ Compensation
12. Hundreds turn up for National Rallies by Tim McClemont
13. Positive Action, Ireland
14. COMING UP, HOW TO REACH US, SUBSCRIPTION FORM, DISCLAIMER,
Acknowledgements to Monk Office Supply. CFAX 1070 Radio, Apple
Canada,
Pacific Coast Net and Island Internet, Inc.
15. Dear Editor
16. CANADIAN LIVER FOUNDATION
17. FROM THE OKANAGAN
18. Background document on Irish Compensation Scheme for all
Hepatitis C
victims infected through blood and blood products
19. DAVE'S COLUMN
20. WARNING FOR PEOPLE TAKING CESAMET (Nabilone)
21. Hepatitis C Victims Define Their Expectations
22. AGE-RELATED RESPONSE TO INTERFERON-ALFA TREATMENT IN WOMEN VS
MEN WITH
CHRONIC HEPATITIS C VIRUS INFECTION
*************************
Pharmacare Deductible to Increase
As of April 1998, the BC provincial government has increased the
annual
pharmacare deductible from $600 to $800. To keep this in
perspective—
Saskatchewan residents must pay $850 every 6 months or $1700 per
year.
-------------------------------
April 20, 1998
Delivered by Hand
The Honourable Jean Chrétien
Prime Minister
House of Commons
Ottawa, ON
Dear Prime Minister
We have come here today to Parliament Hill as Hepatitis C
sufferers to ask
you to personally intervene to ensure there is a just and fair
resolution
of this blood tragedy.
Compassion and justice are what we seek. The offer of
compensation before
us artificially divides us and creates barriers among people who
have the
same serious viral illness, through no fault of their own. The
Government
must now re-open the compensation plan offered in March, which
excludes so
many sufferers, and ensure there is full consultation in advance
of a
negotiated settlement. We stand united as victims of the Canadian
blood
tragedy.
Justice Krever in his Report spoke for us all when he concluded:
“Compensating some needy sufferers and not others ... cannot
be justified”.
He had your confidence when he was appointed by you to
investigate the
blood scandal in Canada. He uncovered a catalogue of decisions
made poorly
and in bad faith that have left us, the victims, bearing the
consequences
of this tragedy. We are sick, many of our friends have died and
Hepatitis C
will claim many more Canadian lives.
Today, people have traveled from all parts of Canada to show
publicly to
you, your Government colleagues, and all politicians their sense
of outrage
at how you propose to resolve this issue. Others had wished to
join us but
were too ill to travel. Compensation and other recommendations of
the
Krever Report must be addressed urgently by the Federal
Government. Our
voices are raised today for a just and fair resolution of the
health and
compensation issues. It is not adequate or acceptable to simply
offer money
to a selected group in an attempt to absolve your
responsibilities.
We ask you to accept the responsibility, as Prime Minister, of
seriously
addressing the consequences of what is acknowledged as an “unprecedented
public health disaster in Canada”. This must be done through
full
consultation with representatives of the victims, without undue
delay, and
to the satisfaction of those infected. We now seek an immediate
meeting
with you so you can hear first hand of our concerns. We are
available to
meet with you at any time and our members throughout Canada
eagerly await
your response.
Yours sincerely,
Jeremy Beaty
Chairman and President
-------------------------------
April 20, 1998
Delivered by Hand
The Honourable Allan Rock
Minister of Health
House of Commons
Ottawa
Dear Minister Rock
Hepatitis C sufferers, from all parts of Canada, are gathered on
Parliament
Hill, to ask you to provide us with a compensation plan for all
victims
that matches your words in dealing with this issue in a fair and
humane way.
Our presence is a symbol of the anger and injustice members feel
at the way
this issue is being handled. We oppose the creation of artificial
divisions
among victims. Today we are also writing to Prime Minister Jean
Chrétien,
and other Government Ministers, to highlight the urgent need for
a fair and
just resolution of this blood tragedy. The Government must now
re-open the
compensation plan offered in March, which excludes so many
sufferers, and
ensure there is full consultation in advance of a negotiated
settlement.
As representatives of the largest Hepatitis C through transfusion
group in
Canada, the Hepatitis C Society of Canada asks that you to
provide funding
for independent legal representation to enable our Society to
access
professional advice on behalf of Hepatitis C transfused victims.
This is an
issue you can immediately address, and show clear good faith,
through a
willingness to assist us in our efforts to reach a just
resolution.
Health issues are also of serious concern to our members and in
particular
the need to provide priority access to drug treatment and
therapies, that
are not included in today’s health care.
All victims suffer equally from the same debilitating and
uncertain
condition and attempts to provide simple solutions with cruel and
unjust
exclusions will not work.
Representatives of our group now seek an immediate meeting with
you at any
time to discuss our position and to personally hear your
proposals on
resolving this issue. We await your immediate response to matters
raised in
this letter.
Yours sincerely
Jeremy Beaty, Chairman and President.
------------------------
SQUEEKY’S CORNER
________________________
“April 20, 1998: Making a difference”
When I first became really ill with hep, my horizons diminished
accordingly. I began to see myself as increasingly incapable of
any
meaningful activity. Slowly, however, things began to change; and
what
changed me most was getting involved with an on-line hepatitis C
information network and the Hepatitis C Society of Canada.
At first things were slow. About 2 years ago in Montreal, not
much was
happening. A few of us tried to organise, and we had some
successes.
Slowly it began to dawn on me that I could do some things. Become
informed,
for one—and pass it on, for two (I think that’s
Canuck-eh?). But I kept
having this idea: since I was so tired most of the time, if
somebody were
to plop me down somewhere (like in front of some parliament
buildings) with
a sign in my hand (or around my neck) and the weather weren’t
TOO bad
(we’re not talking Miami here), then, well, I’m so
tired I really wouldn’t
mind and maybe, just maybe somebody out there would begin to
understand
that what we were going through demanded attention!
On April 20, 1998, I got my chance. Boy did I ever. What a day in
the
life of a hepper! Thank you Tim. Thank you Jeremy. Thank you
Leslie &
thank you Dave for your leadership, and for getting the message
out. And a
special big thanks to Helen Hubbard and the others who spoke out
from their
hearts and moved many of us to tears. Thanks also to all of you
whose
names I don’t know, or can’t remember, for the letters
(Ron Thiel, Peggy
Daisley, Gary Joneson) and faxes that you have sent to
politicians and the
media, and for your encouragement. Thanks to all on various
phoning
committees for doing your job and getting the message out. Thanks
to those
of you who answered phones, printed out fliers, paid for
photocopying and
postage out of your own pockets......etc. etc. etc.
I don’t have the exact numbers--but we had well over one
hundred people
show up at the Rally in Victoria. We had media coverage from the
beginning
of our walk from the office all the way through the downtown core
and on to
the Provincial Legislature. We had politicians, people and the
press. We
had people stopping to take notice and cars honking their support
for us as
we marched for justice.
It’s funny, but on April 20, 1998, I felt proud to be a
hepper. Instead of
feeling on the outside, I realised that I was part of a family of
people
just like me who were ill and who needed treatment, a cure—and
justice. If
we didn’t succeed in driving that point home to all the
politicians on
April 20, I am positive that we did succeed in getting through to
some of
them.
The point is that the fight has just begun, and we can’t
back down now.
So, if you don’t know what you can do, or if you feel too
tired, I’m pretty
sure that somebody can pick you up and plop you down right where
you’re
needed. And, guess what? There’s a pretty good chance that I’ll
be the
guy next to you.
Keep fighting!
Squeeky
----------------------------
IVAN’S INPUT
A lot is being said about compensating ALL victims of Hep C
tainted blood,
which is fair enough, but I thinks its now time that
we/you/someone come up
with some facts and figures for that compensation.
In other words, its one thing to jump up and down about how
unfair the
present compensation package is, but something else again to
actually quote
monetary figures on what we/you/everyone would like to see for
compensation, and to have the media also quote these monetary
figures. I
think the more specific we make our claim, the better chance we
have of
getting what we want.
To that end, the following is what I as someone who was unjustly
infected
by tainted blood would like to see as a compensation package.....
Since the Government is quite adamant that '86 is the cut off
date, which
means they won't simply compensate everyone from the beginning of
time, I
think it is fair to ask for a two or three tiered package, those
before a
test was available ('80, '81, or '82) depending on who you
believe on when
a test was available, '81 to '90, (when they SHOULD have been
testing) and
after '90 when they actually did start testing.
I think some sort of package like that offered to the HIV victims
is the
kind of thing we should be pushing for, not a small one time lump
sum.
Something like the following....
The Federal Government should compensate those that were infected
from '81
or '82 to '90 with $75,000.00 over 3 years ($25,000.00 a year).
Those
infected before '82 should get something like $25,000.00 or
$30,000.00 as a
one time payment. (Even though we are talking about two different
groups,
we are STILL talking about compensating EVERYONE)
The Provincial Governments should be compensating those from '81
or '82 to
'90 with AT LEAST $12,000.00 a year (if not more) for as long as
the person
is infected with Hep C. Remember this is a life long debilitating
progressive liver disease. Many people infected with Hep C are
already on
some form of Provincial Disability, and many more will be on some
form of
Disability in the near future. Having the Province's put this up
front as a
compensation package means those infected would not have to go
through the
arduous task of claiming Disability. Those infected before '82
should get
free access to drug therapy and medication, as well as ANYONE
infected with
Hep C, regardless of how they became infected (just as is done
for HIV
infected people). This still calls for compensation for everyone,
but is a
multi-level package.
There should ALSO be a SURVIVOR BENEFIT provision made for
children and
spouses of people who die due to being infected with HEP C. In
other words,
whatever compensation package is provided, should continue to go
to the
children or spouse after death for a certain time period,
something like 10
years. (Provided either by Federal or Provincial Governments.)
The Federal and Provincial Governments should undertake to fund
research
for a cure for HEP C.
For those that have been infected AFTER 1990, these will have to
be dealt
with as individual legal action suits, the blood supply is not
safe even
today, but many people now know the risks of blood transfusions.
Something like the above plan, LIKE THAT OFFERED TO HIV VICTIMS,
is in my
humble opinion, a FAIR one. It DOES NOT bankrupt any of the
Governments nor
OVER BURDENS the Healthcare System, but shows SUPPORT and
COMPASSION for
those that were UNFAIRLY INFECTED with Hepatitis C.
Again, as I stated, simply calling the present offered package a
joke, I
believe will get us nowhere, but actually asking for specific
amounts of
money, and specific compensation for specific groups shows that
we actually
KNOW what we are talking about, and shows that we KNOW WHAT WE
WANT, and
that we will not except anything less.
- Ivan Good
Victoria Chapter
---------------------------
IT'S TIME TO STEP INTO THE RING
I've been putting this off for sometime now; always successful in
finding
some valid excuse to offer the inquiring minds who want to know
if I've
been writing lately. But being a writer with an imagination makes
my
offered excuses (because that's exactly what they are) totally
plausible -
even to myself. So I'm a great one for believing my own reasons
for not
writing, which makes me a fantastic procrastinator. And
procrastination is
a wonderful luxury to bask around in, if you have the time.
But as the years since 1983 go by, and all of a sudden reach 15
years with
a potentially fatal disease called hepatitis C, I am realizing
that, like a
lot of "luxuries" slowly exiting my life, time is
becoming less and less of
a commodity. So it seems, this would be the time I have had
enough. It's
now my time to step up and join with the crowds who are becoming
instrumental in taking away the "silent" in what's
called "The Silent Killer."
Upon sitting down to write this, I realize a lot of you aren't
ready, for
one reason or another, to stand up and be counted, to be loud and
proud,
vocal or seen. I understand this because I also realize that I
have had a
lot more time than some of you to get over the anger and
helplessness. No,
let me rephrase that. To deal with the anger and helplessness. No
longer
can I literally take this lying down.
I am, of course, talking about the (lack of) compensation in the
package
offered down from Allan Rock that excludes and separates a group
of
innocent victims who could have also had this infection
prevented.
To the many of you who have been brave enough to allow their
status be
publicized, "Right on!" Definitely, this is the way to
go. I believe it is
no coincidence that as I write, the demonstration in Victoria has
just
appeared on the noon news as a headliner. Cool. I have to
thank-you all for
being there. Most well done. I am proud of you, and wish I could
be there;
but I'm doing what I can, here.
Which brings me to this call to the people: You do not have to
get
publicized to do something about this - if you don't want to.
Write
letters. Make phone calls. Do it horn the privacy of your own
home. Get
your friends and family to write letters and make those annoying
phone
calls with demands for answers to your question of "What is
going to be
done?" Never underestimate the power of the people. And that
would be us
-because there's no cavalry charging up the hill to the rescue.
Are we all
quite mad enough yet?
So, with anger being such a great motivator and all ... Have we
all written
our letters to Prime Minister Chretien? And how about flat Allan
Rock?
Well, okay. But there's still Premier Glen Clark? And Penny
Priddy? And of
course, you've contacted your MLA? Your MP? Hhhhmmmm... all
right... No
letters. Well, what about some phone calls?
Have you asked your friends and family to write and call?
Hey, don't feel bad. I'm just starting to do it now myself.
I only recently sent my one-page letter to all the above MP's,
etc. I would
think one page - for now~. We should follow up our letters with
more phone
calls and then send copies of previous letters along with any new
ones.
Also, the Hep C Society of Canada (and your lawyer, if you have
one) would
like copies of your letters as well. Just for your convenience,
and so you
no longer have a excuse, the addresses are included at the end of
this
column. No stamps needed MP's -just your local MLA.
As for phone calls, try these 1-800 numbers out... very
interesting. Yes,
it's really quite amazing how deftly those government agencies
can pass you
around so quickly that, in just under 15 seconds, you have talked
to all
three secretaries of our Premier, Provincial Minister of Health
and local
MP, and not learned a thing. Call back. They have mastered the
art of
passing-the-buck rather well with our tax dollars. So don't stand
for it.
Make these secretaries take a message with your name and your
concerns
BEFORE they transfer you down the line - and be prepared for a
"We need
something in writing."
With action, we become involved in our own destiny. We therefore
become
instrumental and effective. We cannot wallow in self-pity,
sadness or anger
- well, not all the time anyway... So, in rising above the
negatives, by
doing something positive, we can feel better about ourselves
spiritually,
which is just as important as looking after ourselves physically
by eating
properly, avoiding alcohol and beings as active as possible -
which we will
get into later, amongst other things. Until then, "Take
special care of
yourselves - and keep up the good fight."
The Right Honourable Jean Chretien
Prime Minister of Canada
Langevin Block
80 Wellington Street
Ottawa. Ontario, KIA OA2
Thu Honourable Glen Clark
Premier of B.C.
Parliament Buildings
Victoria, B.C., V8V 1X4
The Honourable Allan Rock
Minister of Health
Brooke Claxton Building
Postal Locator 0916A
Ottawa, Ontario. K1A 0K9
The Honourable Penny Priddy, MP
Minister of Health
Parliament Buildings
Victoria, B.C., VSV 1X4
For the name and address of your MLA and Prov. MP offices call
#1-800-661-8683.
For the name and address of your MP call #l-800-667- 3355 (No
stamps needed.)
: Victoria McClelland
Monday, April 20,1998
-----------------------
We would like you to meet Hopsy the HepC bunny.
My husband and I decided that I would paint this bunny for his
quilt
square. The original Hopsy is painted on a 12"x12"
square of yellow
broadcloth. It was sent to Hawthorne, California and is now part
of Marie
Stern's Hepatitis C quilt project. The message from Hopsy #1 is:
Have you
been tested? / "Hop to it!" / KEN / Saint John, N.B.
Our second Hopsy arrived in Penticton, British Columbia on
December 14th,
1997. Leslie said her smiling young son was thrilled to realize
that a
stranger would paint something just for him. So, this Hopsy is
being
framed and will hang on the bedroom wall of a nine year-old boy
who has
Hepatitis C. The message from Hopsy #2 is: "Hi Jarad".
The third Hopsy was painted as a poster which could promote
awareness about
Hepatitis C and would urge people to be tested for this virus if
they have
any of the risk factors. On February 3, 1998, I telephoned our
local
Public Health Nurse and told her about Hopsy the HepC bunny. I
told her
that this poster was suitable for doctors’ offices or
bulletin boards.
Within the hour, I had a meeting at the Public Health office. So,
this
Hopsy poster was on display at an Information Meeting, on March
5, 1998.
This Hopsy is painted on a 14"x13" piece of yellow
broadcloth. The message
from Hopsy #3 is: Have you been tested? / "Hop to it!"
/ Hepatitis C.
I offered to paint another Hopsy poster for the upcoming meeting
and my
suggestion was approved. The fourth Hopsy poster was displayed at
the
entrance area for the Information Meeting about Hepatitis C. This
meeting
was held on March 5, 1998 at the Public Library, Market Square,
Saint John,
New Brunswick. This Hopsy is painted on a 14"x22" piece
of white Bristol
board. The message from Hopsy #4 is: "Anybunny can have
Hepatitis C".
Ken & Audrey Knight
kknight@nbnet.nb.ca
http://www.geocities.com/yosemite/6419
For more information about the Hep C quilts, please contact:
Marie Stern <stern@flash.net>
Leslie Gibbenhuck<bchepc@bc.sympatico.ca>
----------------------
New Technique for Designing Antivirals to Help HIV Patients May
Also Help
Hepatitis Patients
SOURCE: AIDS TREATMENT NEWS
New Antiviral Technology in Human Testing; Article Available From
AIDS
TREATMENT NEWS
SAN FRANCISCO, April 15 /PRNewswire/ -- A new technology for
designing
antiviral drugs, developed by Trimeris, Inc., a biotech company
in Durham,
NC, and largely ``off the radar'' of the media and Wall Street,
is
explained in the April 17 AIDS TREATMENT NEWS, a twice-monthly
newsletter
on HIV treatment research. T-20, the first such drug and the only
one now
in human testing, reduced HIV viral levels as well as the
approved protease
inhibitors, in a proof-of-principle trial in patients; no side
effects were
seen. The technology is not limited to HIV, but may also produce
drugs
against other enveloped viruses -- a group including influenza,
hepatitis
B, hepatitis C, and Ebola.
Because it targets a different viral mechanism than any drug now
in use,
T-20 may work equally well even for the patients who are hardest
to treat
those who have already become resistant to all available HIV
treatments.
T-20 was discovered unexpectedly at Duke University during HIV
vaccine
research. This drug must be given by injection, and will probably
be
delivered by MiniMed portable infusion pumps like those now used
with
diabetes, allowing precise control of blood levels. Later, orally
available
equivalent drugs may be developed.
An in-depth description of this antiviral technology is available
without
charge from AIDS TREATMENT NEWS; ask for a preprint of ``T-20 and
Trimeris.'' Contact AIDS TREATMENT NEWS at 800-TREAT-1-2 or
415-255-0588,
fax 415-255-4659, or email aidsnews@aidsnews.org. Back issues of
AIDS
TREATMENT NEWS -- which has been published continuously for over
10 years
-- are available at http://www.immunet.org/atn.
-------------------
Legal Fees
I am concerned about those of you who are currently eligible to
make a
claim for compensation! I do agree that it is wise to obtain
legal advice,
but that when it comes to retaining a lawyer to represent you in
making a
claim for compensation, then personally, I refuse to pay any
lawyer between
30-40% of any money I may receive. If, in fact, the matter
proceeds to
litigation, only then I can see paying a lawyer this outrageous
fee.
Unfortunately, this process has become an agreement between
lawyers and
politicians, and, as a result, it has prejudiced so many people.
I think
that the issue surrounding legal fees in the recent passing of
the Class
Action Act has been overlooked by both Parliament and the
Legislative
drafters in a rush to have this Bill enacted as a response to
those women
claiming compensation for breast implants.
As far as I understand the current situation is as follows: Once
retained,
your lawyer may charge up to 30% of your award for legal fees
only. Then
they add disbursements filing fees, and other related expenses,
the total
of both of these not to exceed 40% of the total award. This type
of legal
fee does work in cases where the lawyer represents only one
person as is
the norm in most retainer agreements. In contrast though, a law
firm
representing hundreds of victims and communicating once on behalf
of many
victims, should not be able to charge these high rates on an
individual
basis. In some cases, this means that the lawyer will receive
more than the
victim after taxes has been paid. I find this offensive and a
violation of
what justice and fairness is meant to be.
In my recent letter to Allan Rock, Reed Elly MP and others, I
have
suggested that this matter needs prompt revisiting. If any of you
have
hired lawyers, do not be afraid to ask questions and make sure
you read
those retainer agreements carefully. If, in fact, you have a
similar point
of view, please write Allan Rock and our Attorney Generals
provincial and
federal.
Phoebe McCulloch
April 21, 1998
(Editor’s note: Please address any replies to this article
to Ms.
McCulloch, c/o the Victoria Office of HeCSC)
------------------------
CLASS ACTION SUITS:
BRITISH COLUMBIA
Camp Church and Associates
Sharon Matthews / Kim Graham
4th Floor, Randall Building
Vancouver, B.C. V6B 1Z5
1-800-689-2322
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, B.C. V5Z 1K1
(604)874-7171
(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).
ONTARIO
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
TRACEBACK PROCEDURES:
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.
TRACEBACK INQUIRIES
Contact:
Dr. Lisa Jeppesen, Dr. P Doyle, or Glenda
The Canadian Red Cross Society
4750 Oak Street
Vancouver, BC, V6H 2N9
1-888-332-5663 (local 207)
-----------------------
Class Action/ Compensation
If you would like more information about the class
action/compensation, you
can contact:
Tricia Plunkett. Tel. (250) 479-5369
e-mail: plunket@islandnet.com
Meetings will be set up so that we can share our experiences
dealing with
lawyers, the results of our own investigations, and so that we
can decide
what is in our own best interest as far as legal steps to take.
========================