"Our Readers Ask"
One of our
readers, Cian Bulioni, wants us to let you know that he cannot understand why
the National Office of HeCSC stated the following in its last newsletter: "Our society at all levels was rewarded
for our advocacy, with a federal transfer to the provinces of $300 million…so
that provincial health care programs to people with hepatitis C will be
provided."
When Mr.
Bulioni telephoned the Toronto office to ask what this meant for him, he was
given the Compensation Hotline number.
Asking for succour, but feeling like a sucker, Cian forwarded us his
complaints and asked that we share this little "incident" with you,
our readers.
In case you
don't know, our local office in Victoria—one of these "levels"— has seen
NONE of this money. Our "individual" members—another level—have
received no increased health benefits, no extra homecare, no easier access to
treatment, no increased subsidies, no food allowances and so forth. Treatment for most of us is inadequate, and
for some, non-existent—especially if you are poor and live in BC.
We continue on
a shoestring, struggling to get the bulletin out, and to provide literature and
help to all who ask. Requests for
official funding from the federal government and from our national office for
help with our publications and services continue to go UNANSWERED.
On the other
hand, we have recently received a cheque from
the inmates at Vancouver Island Correctional Centre to help us continue
with our work. Now that's what I call
all levels. Way to go boys! Thanks for the reward!
PS: Cian, you wanted details about the
program. Well keep reading this bulletin. Darlene has the latest on our attempts to
get treatment for persons in BC (see page 8).
As well, as soon as Ron or Leslie hear anything about compensation
issues, I assure you we will give you
reliable and timely information.
On the level
C.D. Mazoff
In
the July issue of the Bulletin, we posted an announcement that both Dr. Anderson
and Natalie Rock had joined the medical advisory board of HepC BC. We had
spoken to them in their office, where they had requested that we send them an
official request by fax. In our enthusiasm we thought that they had agreed to
be on our medical advisory board and made that announcement prematurely. To
date, we have not received official acceptance or refusal from Dr. Anderson or
Natalie Rock. They have promised that we will hear from them shortly. We
sincerely regret any embarrassment that the premature announcement caused. At
such time that we receive an official response from them, we will post this
information in the bulletin.
The
medical advisory board of HepC BC at present comprises Dr. Martin Schechter,
National Director of the Canadian HIV Trials Network, and Dr. Mel Krajden,
Associate Director of the BC Center of Disease Control Laboratory.
Dr.
Aslam Anis, PhD., Assistant Professor of Health Economics, Department of Health
Care and Epidemiology at the University of British Columbia is on our Academic
Advisory board.
Greetings
to everyone from the Sunshine Coast! Our September meeting is put on hold for
now. If there are any changes, please watch Cable 11.
I
will be moving to Dean Park on October 1st. and I am hoping someone can give me
referrals for doctors. I would like to find someone who is up to date with
information on Hep C and who really cares for their patients’ needs. During the
month of September ONLY I can be reached @ 383-9234 (Victoria), and as of
October 1st. our new phone number will be 655-9468. My email for September is
karen_felske@sunshine.net. Thanks for any support! I would like to say farewell
to everyone I have met at our meetings on the Coast. Good luck to everyone.
Ian, take care of yourself, OK?? Kathy, keep an eye on him!! Good luck to you
Kathy. I am sure that everything will work out just fine. Thank you!
I
hope the meetings will carry on (I am sure that they will) and I wish all my
friends love, health and happiness. You can still e-mail me, and to those who
do, I will send you my new address. Bye for now.…
Karen
Felske
The
first meeting of the Prince George hepatitis C support group took place on
September
7th.
HepC
BC will be at the meeting on October 12th to answer questions and offer
support. 7:00 PM Room 102 of Prince George's hospital.
Canadian
Liver Foundation, Central Alberta chapter:
Hepatitis B&C Support Group
Every 2nd Thurday 6-8 P.M.
Provincial Building
Rm. 109, 4920 51st., Red Deer
Call Shane Bower for more Info (403)
309-5483
______________________________________________
Kitchener
chapter contact:
Edmonton, Alberta Hepatitis C Informal
Support Group Meetings will be held the third Thursday of each month (Next Meeting Thursday,
September 16th/99) from 6-8 PM at 10230-111 Avenue Edmonton, AB, in Conference
Room "A" (the basement of the building).
Contacts:
Tracey Peddle: NitNGale@telusplanet.net
Jackie Neufeld: (780) 939-3379
Parking: Meter Parking
(underground and surface)... roughly $3 per evening. There is some street
parking free if you're willing to walk.
Hepatitis C Montreal meets every 3rd Tuesday of the
month at the Dawson Community Center, 666 Woodland Avenue, Verdun, Quebec.
In
the last Bulletin a number of people were thanked but some were left out, which
I feel was a mistake. Both Gary Lunn, MP and Dr. Keith Martin
participated in the run and they have both been very strong spokespersons on
our behalf in parliament.
Also,
Murray Coell, MLA was present at the fun run. Murray has been present at
all rallies and functions we have held and he makes sure the Legislature knows
what is going on.
I
feel these three deserve special mention.
Ron
Thiel
By
Will Lawson
There
is currently no vaccine against hepatitis C virus (HCV) infection, but two
research projects which have been ongoing since 1998 may soon change that. The studies
are being conducted independently by an American company, Chiron Corporation,
and Innogenetics, a Belgian biotechnology company.
Chiron,
which discovered the hepatitis genome in 1987, plans to complete data analysis
this year on a Phase I trial of its HCV vaccine.
Its
vaccine comprises a recombinant HCV antigen preparation in combination with
Chiron's MF59 IFN enhancer, which is designed to induce viral neutralizing
antibodies as well as other potentially protective immune responses.
The
trial was a double-blind, dose-escalating study in which forty-eight healthy
adult volunteers received three immunizations over a six-month period. It was
intended to evaluate the safety and tolerability of two different doses of the
vaccine. The company also intends to look at parameters that will indicate
whether the vaccine stimulated an immune response within the subjects.
Chiron
believes its HCV vaccine has potential both as a prophylactic and therapeutic
product.
Developing
an HCV virus is also one of the highest priorities of the Belgian firm
Innogenetics. In June, 1998, it said its researchers had administered several
trial vaccines to chimpanzees known to have been chronically infected with HCV
for 10 years.
Scientist
Geert Maertens said in a statement that the vigorous immune responses recorded
turning the severe chronic active hepatitis into more moderate liver disease
were “very positive” and without side effects. “Such results have never been
recorded before,” he said. “Our approach opens new perspectives for the
treatment of chronic hepatitis C. Since liver histology markedly improved in
the vaccinees, the progression towards more severe forms of liver disease may
be halted or even reversed.”
Innogenetics intends to start
additional pre-clinical investigations to maximize the potency of the candidate
vaccine and to begin human trials as soon as possible.
Enhancing
the Effectiveness of Alpha Interferons
By
Will Lawson
The
standard treatments for chronic hepatitis C (HCV), alpha interferons (IFNs),
effect a sustained response in only fifteen to twenty-five percent of patients
who qualify for treatment—roughly 8% of the total HCV population (Mel Krajden,
BCCDC).
Although
the causes of IFN resistance in various categories of HCV-infected patients are
still unknown, both viral and host factors have been involved, including
defects in IFN signal transduction and IFN-alpha/beta receptor down-regulation.
In
order to improve responses to IFNs, several drugs have been investigated alone or
in combination with them.
Of
these agents, ribavirin is currently the most promising IFN enhancer. The most
commonly used alternatives to ribavirin are amantadine, rimantadine, (or triple
therapy with either amantadine or rimantadine plus an IFN and ribavirin),
ursodeoxycholic acid (UDCA), and nonsteroidal anti-inflammatory drugs (NSAIDs).
So
far these agents have proven ineffective on their own, and the same may be said
for the combination of IFN and UDCA. The effectiveness of NSAIDs in combination
with IFN is still unclear.
In
1997, for example, the UBC Faculty of Medicine administered a combination of
IFN-alpha 2b and the NSAID ketoprofen on seventeen patients who had been
nonresponsive after six months’ treatment with IFN-alpha 2b alone. The researchers
monitored the patients’ ALT, AST, and HCV serum levels before and throughout
the four-month study. They found no convincing evidence that the combination
had improved any of the patients’ responses to IFN.
However, researchers at the
University of L’Aquila (Italy) claimed recently (Hepatology 1999 Aug;
30(2):510-16) that at least one NSAID, indomethacin, does potentiate IFN
signaling. “Our data indicate,” they reported, “that [a] blockade of
arachidonic acid (AA) metabolism by indomethacin activates a signaling pathway
that converges on STAT1 activation to potentiate IFN-alpha-dependent gene
activation.”
LIVING WITH
LIVER DISEASE PROGRAM
Vancouver
General Hospital, Nurses Residence
2851 Heather
Street
7:00 - 9:00 pm
September 20 —Losing Your Health: Judy Capes , Living through Loss
Counselling Society
September 27—Choosing Complimentary Medicine ; Barb Finley, Tsu
Chi Institute
October 4—Your Liver, Your Health: Dr. Frank Anderson, MD, FRCPC,
Gastroenterologist, Vancouver Hospital, Associate Professor, UBC
October 18—Diet and Nutrition for the Liver Patient: Speaker TBA
To register, please contact the Canadian Liver Foundation at
681-4588