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 cheques payable to HeCSC
Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 926 View St.,
Victoria, BC V8V 3L5. 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
cheque for a donation of $2, if you can afford it. Mail to the address above.
Disclaimer:
The hepc.bull and/or HeCSC cannot be held responsible for any
interaction between parties brought about by this column.
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. 14
Victoria area man (48), HepC & B (healthy carrier), non-symptomatic. Brown hair, blue eyes, smoker, non drinker/drugger, 210 lbs. physically fit. Seeking female (30's to 40's) for companionship/possible relationship. Are you, like me, accepting of this affliction, and focussed on moving forward in a positive and healthy manner?
Ad No. 15
X-addict
I'm 5'9", 160 lbs, brown hair & eyes, tattoo's, HIV neg, non-symptomatic, honest & sincere. I've cleared the slate, lost the baggage and starting fresh. I'm looking for that special lady that's been there and made it. Come on take a chance, I might be the one!!
A while back, I asked you (yes, you!) for a
contribution for our recipe book. Think about it It would be an excellent fundraiser. It would help those living
with Hep C to have recipes which are good for them and easy to make. The
stories would help spread the word about Hep C. And the sales of the book would
bring much-needed money into the organisation.
Please,
please, take a bit of time and send me your favorite recipe. It should be
original. (You can change an ingredient
or two to avoid "plagarism"). Or it could be a family recipe from a
couple of generations back, perhaps even converted to a low-fat version.
We
need a little story about you to go along with it How are you handling the Hep C? How did you find out about it?
How does this recipe help? What is your favorite hobby? What would you
recommend that others do about the disease (no medical advise, though.) Do you
have a funny brain fog antecdote? Anything like that would be great.
Let's
get this off the ground. We can't do it with only 5 recipes, guys.
Please send your recipes &
photos, if you’d like to:
HeCSC
Victoria
926
View Street
Victoria,
BC V8V 3L5
or to jking@pacificcoast.net
______________________________________________
It's not too late for you to add your square to the
Hep C Quilts.
The
squares should measure 12" by 12". For the Canadian quilt, you
should use red cloth with a yellow hand print, or yellow cloth with a red hand
print. You should use black for your name and any message. You may use
different colors on your square for the International quilt, but it should be
the same size as the Canadian square. For both quilt squares, please leave a 1
inch border, so that a seam is possible.
You may also make a memorial
square for a family member who has passed away with Hep C. You should mention
the date of death, and any other pertinent data. A family member may place a
square on either quilt, as well, preferably stating how s/he is affected, for
example: "My mom has Hep C."
Send your square for the Canadian quilt to:
HeCSC
383 Huron St.
Toronto,
ON M5S 2G5
Send your square for the International quilt to:
Marie Stern
4918 W. 135th Street
Hawthorne, CA 90250
Thank you, Tim at HeCSC and
Marie!
“I’ve never been part of an epidemic…”
USHA The
United States Hepatitis Alliance Inc. and Hepatitis Education Project of
Seattle are proud to announce a Symposium on Hepatitis C in Seattle, Washington
at the Seattle Center Olympic Room on November 6, 1999, 11 am to 4 pm. Lunch will be provided at
12:30 pm.
Speakers will include:
Marv Nordquist Jr., CEO of USHA, Dr. Pierre Nader, MD, Liver Specialist,
Legislators, a representative from the Social Security Administration, Attorney
of Law Jim Douglas, the “Caring Ambassadors,” Dr. Jeff Duchin, MD Chief, Communicable
Disease Control and Epidemiology, Public Health, Seattle & King County, Dr.
Martha Davis, Ph.D. HCV-HIV Co-infection issues will be addressed. A veterans
advocate will speak about the situation with our Veterans who have hepatitis C.
Marjorie Harris, “Amberose,” from Canada will speak about how the virus affects
the body as a whole.
Contact : Ane Palmo,
USHA Washington State Chair, lamapalmo@w-link.net 1 (888) 634-6877 or Dave77@emeraldnet.net
THE GENERAL PUBLIC IS WELCOME
AS WELL AS THE PROFESSIONAL COMMUNITY. ADMISSION IS FREE, DONATIONS GLADLY
ACCEPTED. Ane will be out of the country 9/14 to 10/4 Contact David Lang during this time with questions. (206) 242-8577.
Who is USHA? We are a national grassroots,
non-profit organization formed to assist humans affected by HCV find
information and receive support in their local areas. USHA was founded in October
1998 with a grassroots format:
For the people and by the people is our creed. “WAKE UP AMERICA” is our theme. It is the intent of the Alliance
to attempt to bring together all the varied organizations, as well as
individuals themselves who are affected or infected by HCV with the common goal
of putting an end to the disease of hepatitis C. We made or first presence
known on May 3, 1999 when we held awareness rallies in 24 states at their
respective Capitols at the same time.
We do not restrict ourselves to the HCV virus. Some of our members have
other forms of hepatitis.
by Darlene Morrow
As many of you will
already know—Rebetron has yet to be funded by Pharmacare. We have been very
active in this area and need your help. First of all let me tell you what we
have already done. At issue here is the high cost of the drug ($1500 per month)
as well as the fact that this is a bundled product of Schering Plough's brand
of interferon, Intron A and ribavirin. It is now possible to get different
kinds of interferon in Canada—consensus interferon (Infergen) by Amgen and
lymphoblastoid interferon from Glaxo Wellcome. We should be able to choose the
brand we want.
Let's address the pricing issue
first. Intron A costs about $500 per
month. That means that the ribavirin costs $1000 for a month's supply. Now
ribavirin has been around for a long time and, in fact, the patent has just run
out on it. If we look to other countries we can see that in Mexico it costs $2
per 200 mg capsule, and in Great Britain we can get it for less than $1!! In
Canada we are paying over $7! This is outrageous. So we have filed a claim with
the Patent Medicines Price Review Board stating that Schering Plough is guilty
of exorbitant pricing. They have received our complaint and just last week they
told me that they are continuing to investigate and that our claim has merit.
Step 1.
Now, moving on to the bundling
issue. We felt that if it were possible to unbundle the two drugs, this would
take care of step 1 because the ribavirin on its own could not be so highly
priced. So we went to Industry Canada and filed a complaint that Schering
Plough is guilty of Tied Sales. Tied Sales are illegal in Canada and are
defined as a sale that forces a consumer to buy one brand of a product when
they purchase a second product. Industry Canada has been very helpful, and when
I spoke to them again last week, they said they are actively looking into our
claim and that it has merit. So, we're doing pretty well on both issues.
But having said that, how long
will this take? The answer is too long. We don't know for sure, but it is
possible that it could take a year. We must do something else in the interim.
So, now I'd like to ask each of
you to write a letter to Penny Priddy (see page 5). We have to get
Pharmacare moving. BC is the only province that is not funding Rebetron. We
have some good news. Ken Winiski worked very hard and managed to get coverage
for some of us—if you are on welfare AND were in the clinical trial AND then
got cut off when the Health Canada approval came through—you are now covered.
But what about the rest of us? Not so lucky. So we need to let the government
know that this is not acceptable. Writing to Penny Priddy will help us all.
For a small subgroup of people,
this delay could be devastating. If your platelet count is borderline and,
while you are waiting for the government to do the right thing, your platelets
drop to a level that excludes you from treatment with Rebetron, then you would
have a very good legal case against the government. Of course that's not what
we want to see—we want to see you getting treatment.
While
you're writing Penny Priddy, we also need to let her know how much this
province needs a Centre for Hepatitis. The proposal will be going to the
provincial government sometime this month, so let your voices be heard.
Please Copy or Write your
Own Letter and Mail to Penny Priddy
Hon. Penny Priddy
Minister of Health
and
Minister
Responsible for Seniors
133, Parliament
Buildings
Victoria, B.C.
V8V 1X4
Dear Ms. Priddy:
The
hepatitis C community is deeply in need of action on your part. We must have funds allocated to Pharmacare
to pay for Rebetron therapy. This
therapy is the only one that has the potential to return hepatitis C infected
people to an improved quality of life (QOL).
While the success rate is around 42%, almost all people that have been
on therapy (even those that have failed) have a notable improvement in
QOL. This means that many of these
people can return to their jobs and becoming tax paying members of the
community and province once again.
As
a community, we have addressed the issue of the high price of this drug in two
different ways. We are trying to break
apart the bundling of the two drugs that make up the Rebetron package (Intron A
and ribavirin). In doing so, we hope to
bring down the price so that we (and the Province) will not have to pay such an
exorbitant amount. We have filed a
claim with Industry Canada that Schering Plough (SP) (the drug company that
makes Rebetron) is guilty of Tied Sales which is illegal in Canada. We have also filed a claim with the Patent
Medicines Price Review Board stating that SP is guilty of excessive pricing
because it is possible to get ribavirin for $0.96 in Great Britain or $2 in
Mexico and SP is asking for over $7 in Canada. Both of these claims are in
process with the respective branches of the Federal government.
But
now we must wait. And you know the
wheels of government move slowly. In the interim we implore you to move forward
and do your part—cover Rebetron so that people infected with Hepatitis C in
this province can begin the step that may lead to a better life.
Platelet
counts are often low in people who have hepatitis C, especially those with
advanced disease. Rebetron has a
further depressive effect on that platelet count. There are individuals currently hovering around the cutoff
mark. Waiting for treatment, they could
drop below that mark and no longer be able to go on Rebetron. You can see, then, the seriousness of this
situation and all of its implications including the legalities.
We
also wish you to support us in the upcoming proposal for the BC Center for
Hepatitis. BC was a leader in Canada
when they began the Lookback Program.
They became a model for the other provinces to follow. Now there is a chance to do the same again. Be a leader and set forth a model example of
health care for people infected with hepatitis. We are in desperate need of such a Centre. The BC CDC estimates that there are over
40,000 people infected with hepatitis C in this province. Direct action is needed so that we might
curb the devastation that will surely follow if the quality of care for people
with HCV does not improve. Please do
what you can to help us.
Respectfully,
Darlene Morrow
President, HepCBC
My mother
died a few weeks ago (not of hep C) and I thought the following information
might be of interest to my fellow heppers. The doctor who signed the death
certificate was not my mother's regular doctor; it was a doctor who, at the time my mother died, was working
alone in the emergency department and rushed over when he got a free moment. He
was probably tired and made a minor mistake in the certificate. It wasn't of
great importance, but I thought, "What if a mistake was made when one of
us dies."
I
have suggested before that any of us who suspect we may die of liver failure
due to hepatitis C discuss the matter with their doctor. My doctor has stated
that I wouldn't have the end-stage liver disease if it hadn't been for the
hepatitis C, and he will put this on the certificate. In my opinion this could
be critical to those who are involved in litigation, or at least to their
families.
What if it isn't your doctor who
signs the certificate, or if your doctor has forgotten his commitment? My
suggestion is that to be sure that at least one member of the family be present
when the death certificate is signed and try and get a photocopy right away
because the official death certificate, at least in B.C., does not indicate
cause of death.
I must remind you again that I am
not a lawyer, and should you have any doubts, please discuss them with your
legal representative.
Sincerely,
Ron
Thiel
Editor: We at
HeCSC Victoria extend our heartfelt sympathy to Ron, our co-chair, and his family
in this time of grief.
BRITISH COLUMBIA
Camp Church and Associates
Sharon Matthews / Kim Graham
4th Floor, Randall Building
Vancouver, BC V6B 1Z5
1-(888)-236-7797
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, BC V5Z 1K1
(604) 874-7171 or 1-(800) 468-4466
(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 AND OTHER PROVINCES
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
CLASS ACTION FOR CHILDREN
Poyner Baxter
Blaxland
Jim Poyner or Ken
Baxter
Tel. (604) 988-6321
Fax (604) 988-3632
poyner.baxter@bc.sympatico.ca
or
Siskind, Cromarty,
Ivey and Dowler
Michael Eiazenga
Tel. (519) 672-
2121 Local 332
Tel. 1-(800) 461-6166
TRACEBACK PROCEDURES:
INQUIRIES-CONTACT:
The Canadian Red Cross Society
4750 Oak Street
Vancouver, BC, V6H 2N9
1-(888) 332-5663 (local 207)
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.
CLASS ACTION/COMPENSATION
If you would like more information about class
action/compensation, you can contact:
Ron Thiel Tel. (250) 652-0608
E-mail: thielron@pacificcoast.net
National
Compensation Hotline
Tel. 1-(888)
780-1111