Hundreds turn up for National Rallies

Another watermark in HeCSC history was achieved on Monday April 20, 1998,
when two national rallies were held in Ottawa and Victoria. HeCSC members
came together united and told our politicians that we will not be divided.
Media coverage was excellent at both rallies. Many members are now telling
their stories to the media with bravery and dignity, if not a little bit of
discomfort. I feel honoured and privileged to be a supportive witness to
the struggle, to see a community come together and fight for their lives.

Here are the remarks of our President Jeremy Beaty at the Ottawa press
conference:

“We waited patiently for Krever to write his report; we waited patiently
for the governments of Canada to tell us how they would help us. We have
publicly been witnesses to our heartaches from within very private
families. As sick people we have been patient and reasonable in believing
we would be cared for to ease our suffering through social justice and
compassion. The wait is over. Today, we express our anger, frustration and
outrage that decisions have been made to divide us when we will not be
divided. That money is being held out as a salve to our needs without
anyone caring about what are these needs.

April 20, 1998, will be a day long remembered for the coming together
undivided of all Hepatitis C victims who were harmed through no fault of
their own.

We are gathering together on Parliament Hill as one voice from across
Canada to say publicly that we will not be divided. Those who cannot be
here today have told us we will not be divided.

Today we are taking the following actions:

I will be hand carrying a letter to our Prime Minister asking him to
personally intervene to ensure a just and fair resolution of the issues
arising from the Krever Report that directly affect Hepatitis C victims who
have been harmed through no fault of their own.

I will be hand carrying a letter to our Health Minister, Allan Rock asking
for independent legal representation, funded by the Government, for the
Hepatitis C Society of Canada to access professional advice on behalf of
all Hepatitis C transfused victims.

We are asking for a full Parliamentary debate so that the victims and the
people of Canada can hear the Government justify why it proposes to
artificially and arbitrarily divide and create barriers among people who
have the same viral illness through no fault of their own.

We are asking for open discussions with the provincial Ministers of Health
to provide for health guarantees that allow priority access to treatment
and therapies for persons infected with Hepatitis C through blood and blood
products.

Since the compensation plan was announced last month we have heard how any
additional dollars will damage our health care system. The maintenance of
the health care system has no more to do with Hepatitis C than it does with
foreign aid, flood and ice storm relief, or the purchase of submarines or
helicopters.

We have also heard how the Government of Canada, in defending its Hepatitis
C position, cannot compensate all those harmed through health care. We
agree. That is the responsibility of those who deliver babies, set broken
legs and provide anesthetics. However, the Government directly provides the
blood that has harmed us and must take the responsibility for the harm caused.

We are simply average Canadians expressing our expectations with dignity.
Our demands are precise. We expect a positive response--now.”

We need everyone's involvement to help galvanize governments into action.
Your future depends on it.


Until next month,


Tim McClemont

Executive Director

-----------------------------

Positive Action, Ireland

Positive Action is the support group for Irish women infected with
Hepatitis C through the contaminated Blood Product Anti-D. This was a
product given to Rhesus Negative women who were carrying or giving birth to
a Rhesus Positive child. It was a routinely administered blood product and
accepted as safe by around 60,000 women who received the product made by
the Irish State Blood Bank from 1970 to 1994.

In 1994 it emerged that certain batches of Anti-D were contaminated with
Hepatitis C but it took nearly three years for infected women, through
Positive Action, to learn the full truth about this contamination with a
Tribunal of Inquiry into the Blood Transfusion Service Board conducted by a
former Irish Chief Justice, Mr. Tom Finlay. Positive Action members were
represented by the group's legal team at this Inquiry.

It was a member of Positive Action, Mrs. Brigid McCole whose brave fight
through the courts was to uncover the first hidden information about the
contamination. She died of Hepatitis C in October 1996 just days before her
court case was due to be heard but the courage and struggle of this mother
of 12 was to awaken huge public interest in the scandal and turn the
political and moral tide to support Positive Action in its search for
justice and the truth. A hidden scandal had now become an matter of public
outrage.

This report highlighted that this contamination need never have happened if
basic donor selection procedures had been adhered to by the BTSB. Instead
the BTSB knowingly took plasma in 1976 from a pregnant woman who had
naturally occurring high levels of Anti-D and who was undergoing plasma
exchange treatment while she was clinically diagnosed as having infective
hepatitis. Hepatitis C had not been identified at this time, but Hepatitis
non-A, non-B, was well documented in medical literature. It also emerged
when the first jaundice reactions from women who received Anti-D were
notified to the Blood Bank in 1979 they were not followed through.

In 1991 Hepatitis C testing became available and a London Hospital showed
the clear link between Hepatitis C and the archived blood samples from
women who were jaundiced in 1977. Despite having clear evidence the Irish
Blood Bank did nothing.

There was a second major contamination of Anti-D from 1991 to 1994. Then
the BTSB ignored positive Hepatitis C tests on Anti-D samples and put the
product into circulation.

The compensation scheme negotiated by Positive Action is now on a Statutory
basis and therefore cannot be abolished without reference back to the Irish
Parliament by any Government. Positive Action also negotiated a detailed
health scheme, which includes home support services, for those infected.
These schemes also apply in a similar fashion to persons who received
Hepatitis C through transfusions, dialysis treatment or through blood
products used to treat hemophiliacs. The group also coordinated contact
between legal teams who represent individual women on compensation issues
under a lead team which dealt with central issues.

Positive Action has been a multi-faceted organization for Anti-D Mothers.
It has dealt with medical, legal and welfare issues and most importantly it
has provided a forum for women to meet with each other and gain support and
friendship from others in a similar situation. It is now developing a
psychological service for members and operates from an office in Dublin
staffed by a coordinator and Secretary . Just over 1,000 women have now
screened positive for Hepatitis C antibodies and or virus in Ireland to date.


hepcsc@island.net April 20, 1998

-----------------------------------------------------

COMING UP: Victoria Chapter 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: May 27th.

Penticton Chapter Meetings: Third Thursday of every month, 7-9 PM,
Penticton Health Unit - Board rooms. NEXT MEETING: May 21st.

Kelowna Chapter Meetings: Last Saturday of every month, 1-3 PM, Rose
Avenue Education Room in Kelowna General Hospital. NEXT MEETING: May 30th.

Nanaimo Chapter Meetings: Second Thursday of every month, 7 PM, Health
Unit-Central Vancouver Island, 1665 Grant St. NEXT MEETING: May 14th.

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 May 14th. 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: May 7th.
Contact Carol for more information: 886-4298 or email her at
<ryker@cheerful.com>

HOW TO REACH US:

EDITORS

TEL:(250) 388-4311 Joan Diemecke

pdiemecke@compuserve.com

Darlene Morrow hepcbc@sprint.ca

http://www.geocities.com/HotSprings/5670

C.D. Mazoff squeeky@pacificcoast.net

VICTORIA CHAPTER OFFICE:

hepcvic@pacificcoast.net TEL:(250) 388-4311

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

PENTICTON CHAPTER:

LESLIE GIBBENHUCK TEL:(250)490-9054

bchepc@bc.sympatico.ca

KELOWNA CHAPTER:

ELAINE RISELY TEL:(250)768-3573

eriseley@bcinternet.com

CASTLEGAR/GRAND FORKS/TRAIL:

ROBIN TOMLIN TEL:(250)365-6137

NALA PAQU CHAPTERS:

RIA KLOMP TEL:(250)248- 6072
(Parksville)

TED KILLOUG TEL:(250)752-1718

gjones@qb.island.net (G. Joneson)


(Qualicum Beach)

HELEN HUBBARD TEL:(250) 245-8759

(Ladysmith/Nanaimo)


----------------------------------

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

Name: _____________________________

Address: ____________________________

City: _____________ Prov. ___ PC______

Home(___)________Work(___)_________

One Year Subscription: Donation $10.00 Member of: Victoria
Chapter__________[] Vancouver Chapter________[] Okanagan Chapters________[]

"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 the
meetings, as well.)

-----------------

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 hepcBC.bull is the 22nd of each
month. Please contact: Joan Diemecke at Tel (250) 388-4311,
<pdiemecke@compuserve.com>,

Darlene Morrow at 1203 Plateau Drive, N. Vancouver, BC, V7P 2J3, <
hepcbc@sprint.ca> 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 hepcBC.bull is
the 15th of each month. Rates are as follows:

Newsletter Ads:

$10 for 1/6th page, per issue

$100 for 1/6th page, 12 issues (in advance)

$20 for 1/3rd page, per issue (vertical or horizontal)

$200 for 1/6th page, 12 issues (in advance)

whole page: $60 per issue $600 for 12 issues

1/2 page: $30 per issue $300 for 12 issues

-------------------------------------

Dear Editor:

I've just been talking to the Capital Health Office - Kate Darling - at
388-2225 about Hep B and Hep A vaccines - Immunization Program for Hep A
will start after April 1st - call their office after that date. Can you
arrange to have this info put in our Victoria Bulletin and on the web site?
The Hep A vaccine (series of two shots over 6 months and lasts 20 yrs.)
will be given free to any/all people with Hep C. For uninfected people who
are living in a house with a Hep B carrier they can have the series of 3
shots free also but have to call Kate Darling at the Health Office to make
arrangements.

Lisa in Victoria

--------------------------------------

Vancouver Support Group

On May 14th the Liver Support Group will have a guest from the Self Help
Resource Association attend and facilitate the support group. The goal is
to establish group norms and objectives for a cohesive support group. A
second support group for the Fraser Valley/Delta area will also be
discussed. Meeting time is 7:30pm. All interested participants are
invited to attend.

--------------------------------

CANADIAN LIVER FOUNDATION

Evening in the Clouds: A Gospel Dinner for Charity Experience the music of
the Cloud Nine Gospel singers at Mango's Restaurant in the Pacific Inn
White Rock on Monday, June 8th at 7 PM. Tickets are $45.00 and can be
purchased at the CLF office or any Hagan's Travel. Proceeds benefit liver
disease research.

CLF Second Annual Charity Golf Classic Westwood Plateau Golf and Country
Club. Tuesday June 2nd with a 6:30 AM tee off. Join avid golfers for a
full round of golf and raise funds for liver disease research> This is a
pledge event and registration packages can be obtained by calling the CLF.

---------------------------------

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

-----------------------------------------

FROM THE OKANAGAN

Ahhh, spring in Washington, D.C. It truly was a remarkable experience and
an opportunity I will not soon forget.

The three day conference was held at Georgetown University - the home of
the Hoyas. I was greeted by many I had spoken with only via email. It was
great to meet these wonderful people face to face. I met Thelma King Thiel,
founder Hepatitis Foundation International, Ron Duffy founder HCV Global
Foundation, Trish Parnell, founder of PKIDS, Alan Franciscus, founder
Hepatitis C Support Project, Cynthia Hoff VP, Hepatitis Education Project,
Carol Craig and many others who post to the HEPV-L.

Saturday, all participants were invited to share what they do best. What a
room full of motivated talent, representing almost every state! Hearing
everyone's secrets was truly inspirational! We created a Patient Advocacy
Panel whose goal will be patient empowerment. We identified 6 priorities of
this panel. We will be meeting regularly to accomplish the goals we set for
ourselves and our groups.

Despite the border it became very evident we have the same issues, problems
and needs. As we can not individually do much to advance research, it was
decided prevention through education and awareness be our main goal.

Sunday we got to hear the leading US doctors and researchers tell us what
is new. They were an inspirational group. The panel included (all doctors)
John Lamontagne - NIH, Harold Margolis - CDC, Leonard Seeff - Veterans
Administration, Blaine Hollinger - Baylor College of Medicine, and Jay
Hoofnagle - NIH. Probably the loudest messages these gentlemen brought to
the delegates were: 1) we must push for doctors and health care workers to
be better educated about Hepatitis C and 2) yes, Hepatitis C carriers DO
experience liver pain - it is very real!

The highlight of the weekend was listening to Dr. C.. Everett Koop speak at
the Awards dinner and to actually meet the four researchers who discovered
the Hepatitis C genome.

Dr. Koop has been working on a process, hyper thermal therapy, for 8 years,
a process where he extracts the infected person’s blood, heats it, then
replaces it. This effectively kills the virus. It sounds very promising
and I hope to be able to share more with you at a later date.

We spent our last day learning how to approach politicians and practising
our newly learned skills. We also made an impromptu visit to the Canadian
embassy where we were not made to feel very welcome. I suppose we should
have made an appointment!

I am looking forward to attending again next year...God willing.

Until next month, take good care of yourselves.

Love,

Leslie

-------------------------------------

Background document on Irish Compensation Scheme for all Hepatitis C
victims infected through blood and blood products

In Dublin, two panels of the Compensation Tribunal sit five days a week
hearing compensation awards. Each claim is determined individually and in
private. 1,792 claims for compensation under this statutory scheme have
been lodged.

The scheme is open to all persons diagnosed with Hepatitis C from tainted
blood or blood products. The children or spouses who become secondarily
infected can claim. No time periods are specified

Two national screening programs have taken place in Ireland inviting people
who have received blood and blood products to come forward for Hepatitis C
testing.

The Compensation Scheme is enshrined in law - meaning no future Irish
Government can dissolve it by claiming hard economic times.

Only the legal team representing the victim asks questions at
non-adversarial hearings.

Claimants can decide whether they wish a full and final payment or a
provisional award - this allows an individual to return to the Compensation
Tribunal in the event of a specified deterioration in health.

Loss of income and other associated costs can be claimed.

If an offer of compensation is unacceptable to an individual then a
claimant can appeal all or part of that award in private to the Irish High
Court.

All legal and other costs associated with a successful claim are met by the
State.

The scheme does not prejudice the right of an individual to go directly to
the High Court and claim compensation there instead of from the
Tribunal.Background document on Irish Compensation Scheme for all Hepatitis
C victims infected through blood and blood products

Hepatitis C Society of Canada (HeCSC), April 1998.




---------------------

DAVE'S COLUMN

Someone a long time ago said that "Canada needs only to be known in order
to be great." Once upon a time, Canadians were known for their compassion,
therefore its standing in the world was a model for other countries to
emulate.

Compassion: What does it mean exactly? According to Collins’ Thesaurus it
can mean clemency, commiseration, condolence, humanity, kindness, mercy,
sorrow, sympathy, tender- heartedness, and tenderness; qualities sadly
lacking in today's government and, by extension, throughout our whole society.

Our nation is becoming a country full of special interest groups competing
for an ever decreasing slice of the economic pie. This is exactly what our
governments want to see happen. It's the old divide and conquer routine.
That way, the government can have an easier time controlling us, even
though its more chaotic and everyone always seems to be in crisis mode.

Now, I don't want to believe this. It seems to offend my innate but very
British sense of decency and decorum. Are we not placed here upon this
earth ultimately to help each other, especially within the confines of our
national borders? Sure, we'll help individuals wronged by the "system".
We'll give aid to those whose economic and ecological systems have failed
them. We'll provide for flood and ice victims. We will correct the
injustices done to those in our society who've been wrongly convicted of
crimes. We will give millions if not billions of dollars to other countries
to give them a leg up when needed. But for some strange reason, our
governments will throw a paltry few thousand dollars to some, only some,
not all of those of us who have been poisoned by a medical system that gave
us no reason to distrust or fear it. This is becoming a travesty of
Canadian justice. How the scales of our political will can tip so far out
of balance to favour the bottom line instead of compassion and human
decency is beyond comprehension. How these people can actually get up in
the morning and look at themselves in the mirror is mind-boggling to say
the least .

Our esteemed leaders are so far out of touch with reality, they think that
we will actually swallow their swill about dates and times of eligibility
for compensation. Their insistence that 1986 was the benchmark year for
admissibility of fault and a bonafide cut-off point for compensation is, to
my mind, a conscious effort on their part to confuse the issue and mislead
the public away from the truth. the truth being that both the Red Cross and
the federal government AND the pharmaceutical companies engaged in a
campaign to hoodwink the general public.

We know that the truth about the blood supply was well known as early as
1978 given that it was already being reported in the media. I ask the
question at this time. Did it really take 12 years to build the
infrastructure to implement the test that would have avoided this
scandalous and avoidable sin against the Canadian public, or did those
responsible just care less about the consequences of their actions and let
the chips fall where they may, which has lead us to the present horrible
state of affairs ?

David Smith, Chair

------------------------------

WARNING FOR PEOPLE TAKING CESAMET (Nabilone)

I spoke with Dr. Anderson this morning. He was very concerned about
something that he had heard. It appears that some people with HCV are
taking Cesamet (nabilone) for nausea. This drug is very toxic to the liver
and should NOT be used by HCV patients.

Nabilone is used in the treatment of nausea associated with chemotherapy.
Nabilone should be used in extreme caution in patients with severe liver
dysfunction (HCV).

In addition, the side effects of Nabilone include depression, loss of
appetite, confusion, fatigue and headache. These side effects are already
common in HCV patients especially those taking interferon. A decrease in
the white blood cells is also seen with both the nabulone and interferon.

If nausea is a problem, it is recommended that ginger be used. You can buy
standardized, organic ginger in the health food store ($10.00 for 100-500mg
capsules). Take 3 capsules as needed. If this doesn't work, Gravol would
be the second choice.

Darlene Morrow

---------------------------------------

Hepatitis C Victims Define Their Expectations

Media Release Hepatitis C Society of Canada (HeCSC) Ottawa, April 20.

Prime Minister Jean Chrétien has, today, been requested by the Hepatitis C
Society of Canada to personally intervene to ensure there is a just and
fair resolution of issues arising from the Krever Report on the Blood
System in Canada.

The Society has taken this action in its bid for compassion and justice for
all Canadians infected, through no fault of their own, with Hepatitis C
through blood and blood products. Members of the group will gather this
morning from all parts of Canada on Parliament Hill to publicly show their
anger and sense of outrage and how the Government proposes to resolve
compensation issues.

On March 27, 1998, the Government excluded many sufferers of this
Hepatitis C tragedy from its compensation plan. The Hepatitis C Society of
Canada has also asked the Prime Minister and Federal Health Minister Allan
Rock, as well as their Government colleagues, to re-open the compensation
plan and ensure there is full consultation in advance of a negotiated
settlement.

Joining the rally will be two representatives from the Irish Hepatitis C
campaign group, Positive Action. Josephine Mahony and Jane O’Brien will
tell Canadian victims how the Irish plan includes health and compensation
for all infected through blood and blood products. The Krever Report
described the Irish solution as the world’s most advanced system for
righting wrongs perpetrated by the State.

The Hepatitis C Society of Canada is now stepping up it’s campaign to
ensure there is an immediate political will to address current issues
through consultation with victims. Prime Minister Chrétien was told by the
Society President that “it is not adequate or acceptable to simply offer
money to a selected group in an attempt to absolve your responsibilities”.

In particular the group is now seeking:

Re-opening of the Compensation Plan to address the cruel offer and to
ensure there is full consultation in advance of a negotiated settlement.

Independent legal representation for the Hepatitis C Society of Canada,
funded by the Government, to enable it access professional advice on behalf
of transfused victims. This is sought in a letter to Federal Health
Minister Allan Rock. The Society has told the Minister that the solutions,
with cruel and unjust exclusions, will not work and an immediate meeting is
sought with Minister Rock.

A full parliamentary debate to allow Canadians to hear the Federal
Government try and justify why it proposes to artificially divide and
create barriers among people who have the same viral illness, through no
fault of their own.

The Hepatitis C Society of Canada is now stepping up its actions to ensure
politicians and our fellow citizens understand the anger, frustration and
outrage victims feel at the inadequate plan put forward by the Governments.

Today we have written to all Provincial Health Ministers and all Cabinet
Ministers in the Federal Government clearly stating our anger and outrage
at what is proposed. Other actions planned include:

-A national recruitment campaign to give victims and their families a voice
in reaching a just and fair resolution of this issue.

-Developing an intensive communications network to communicate with
provincial, and Federal Government politicians to ensure they are fully
aware of the our strong views and concerns.

-President of the Hepatitis C Society of Canada Jeremy Beaty said today
victims have been patient too long. “As sick people we have been patient
and reasonable in believing we would be cared for to ease our suffering
through social justice and compassion. The wait is over. Today we express
our anger, frustration and outrage that decisions have been made to divide
us when we will not be divided”. He described the April 20 Rally of
Hepatitis C victims as a day that will be long remembered for the coming
together of all Hepatitis C victims who were harmed through no fault of
their own.

Tim McClemont,

Executive Director


------------------------

AGE-RELATED RESPONSE TO INTERFERON-ALFA TREATMENT IN WOMEN VS MEN WITH
CHRONIC HEPATITIS C VIRUS INFECTION

Background: Interferon alfa is used widely for patients with chronic
hepatitis C virus (HCV) infection. Little is known, however, of the
relationship between patients' sex and the effectiveness of interferon alfa
treatment in these patients. Methods: We treated 311 patients (199 men and
112 women) with human lymphoblastoid interferon (6 million units
subcutaneously every day for 2 weeks and 3 times a week for 22 weeks) and
observed them for an additional 6 months. Serum HCV RNA levels and genotype
were tested by polymerase chain reaction before treatment. A liver biopsy
was also done. For the purposes of this study, a complete response was
defined as the elimination of HCV RNA for at least 6 months after the
termination of treatment.

Results: The rate of complete response was 27.1% for men and 24.1%
for women. With multiple logistic regression analysis, the HCV RNA level
(P<.001), genotype (P<.001), patients' sex (P<.05), and the interaction
between sex and age were associated with a complete response to interferon
alfa. The rate of complete response was 33.3% in men aged 39 years and
younger, 25.0% in men aged 40 years and older, 75.0% in women aged 39 years
and younger, and 15.6% in women aged 40 years and older. The odds ratio by
group was 1.00, 0.72, 4.38, and 0.21, respectively.

Conclusions: Our finding that women aged 39 years and younger are
responsive to interferon alfa treatment suggests that hormonal activity, in
particular the level of estrogen, may be associated with the sustained
elimination of HCV.

AUTHOR: HAYASHI J, KYUSHU UNIV HOSP, DEPT GEN MED, HIGASHI KU FUKUOKA
81282, JAPAN SOURCE: ARCHIVES OF INTERNAL MEDICINE 1998
JAN26;158(2):177-181


-----------------------




*************************************************************

HepC BC
http://www.geocities.com/HotSprings/5670
Email: hepcbc@iforward.com
Hepatitis C Education and Canadian Support

*************************************************************

HepC BC

HepC AB

1