July 1998 - hepcBC.bull
Research
and HCV- How YOU Can Make a Difference by Darlene Morrow, BSc
At the hepc.bull we are making a concerted effort to become
directly involved in our own therapies and research into HCV. We
are pushing for more HCV research and ultimately a cure. With
that in mind we have sent out letters to the drug companies that
are directly involved in research into HCV. A copy of a similar
letter appears on page 5 of this newsletter. We have sent letters
to over 25 companies and will follow through, unrelentingly,
until we get a response and help. We want YOU to send the
letters, too. You can copy the letter here, write it in your own
hand, or write a different one altogether. We must take charge of
what is happening with the research and/or treatment. The more of
us that get involved, the more likely we are to succeed.
Let’s all work together for a CURE. I am listing the
companies, their addresses and a brief description of what they
are researching.
1. SciClone Donald R. Sellers 901 Mariner's Island Blvd.,
San Mateo,CA, 94404 Zadaxin, Zadaxin/IFN.
ZADAXIN (thymosin alpha 1) was originally isolated from the
thymus gland and is now produced through chemical synthesis.
ZADAXIN has been shown to stimulate the human immune system by
promotes the maturation of T cells, which are involved in the
control of various immune responses.
2. Schering-Plough, DNAX Research Institute 901 California
Ave., Palo Alto, CA, 94304-1104
Pegylated IFN, Rebetron (Intron A and ribavirin combination),
Intron A, IFN/iron reduction, Rebetron in treatment naive
patients, Induction Combo- high dose IFN for 30 days followed by
traditional dose for 11 months.
Intron A-Interferon, Alpha-2b [Recombinant] - a water soluble
alpha-interferon protein produced in recombinant E. coli
containing the interferon alfa-2b gene from human leukocytes.
Pegylated (PEG) Interferon is a long acting interferon that only
requires a once a week injection.
Ribavirin— a guanosine analogue antiviral drug with actions
against a wide variety of DNA and RNA viruses including HCV.
3. Amgen Gordon Binder 1840 DeHavilland Drive Thousand
Oaks, CA, 91320-1789 Infergen, Maxamine (see Maxim for details)
Infergen; Interferon Alfacon-1; consensus interferon,
recombinant. A non-naturally occurring, recombinant,
"consensus" form of interferon-alpha protein derived
from E. coli.
4. Amarillo Biosciences Joseph Cummins 800 W 9th Avenue,
Amarillo, TX 79101-3206
Sublingual IFN, Non Oral IFN. Studying the effects of low dose
oral IFN with high dose injectable IFN.
5. Nabi David J. Gury 5800 Park of Commerce Blvd. NW, Boca
Raton, FL, 33487
Nabi-Civacir (human polyclonal antibodies to HCV).
6. Chiron Corporation Sean Lance 4650 Horton Avenue,
Emeryville, CA, 94608
Beta IFN (recombinant).
7. Interferon Sciences, Inc. Mei-June Liao 783 Jersey
Avenue, New Brunswick, NJ, 08901-3660
Alferon N (Interferon Alfa n-3). Alferon is a natural, human
leukocyte-derived interferon alpha protein for use by injection.
8. Viragen, Inc. Gerald Smith 865 SW 78th Avenue, Suite
100, Plantation, FL, 33324
Natural Human IFN.
9. Glaxo Wellcome Dr. Richard Sykes Lansdowne House,
Berkeley Square London W1X 6BQ, UK
Wellferon (Lymphoblastoid IFN). A highly purified blend of
natural human alpha interferons, obtained from human
lymphoblastoid cells following induction with Sendai virus.
10. Hoffmann-LaRoche 340 Kingsland Street Nutley, NJ 07110
Roferon-A (IFN alpha-2a, recombinant), PEG IFN Roferen:
Recombinant E. coli-expressed interferon alpha-2a.
Pegylated (PEG) Interferon is a long acting interferon that only
requires a once a week injection. The interferon has been
covalently bound to polyethylene glycol and is slowly released as
these covalent bonds degrade. This offers the effect of a steady
level of IFN in the blood.
11. Biogen Corp. James R. Tobin 14 Cambridge Center,
Cambridge, MA, 02142
Avonex— Interferon beta-1a, recombinant. Produced by
mammalian cells (Chinese Hamster Ovary cells) into which the
human interferon beta gene has been introduced.
12. ICN Pharmaceuticals Milan Panic 3300 Hyland Avenue,
Costa Mesa, CA, 92626
Ribavirin— see Schering
13. Maxim Pharmaceuticals Larry G. Stambaugh 8899
University Center Lane, Suite 200, San Diego, CA, 92121
Maxamine is a form of histamine, in combination that is used with
Amgen's Infergen. A recent publication demonstrated that patients
with chronic hepatitis C (HCV) with low levels of histamine in
blood did not respond to IFN-alpha. Maxamine is a histamine
analog and has been shown to enhance or synergize with cytokines
such as interferon-alpha.
14. Immunex Corporation Edward V. Fritzky 51 University
Street, Seattle, WA, 98101 Granulocyte-Macrophage
Colony-Stimulating Factor (GMCSF) used with Interferon.
Investigational
Research Looking for Novel Treatments for HCV
by Darlene Morrow, BSc
There are well over 20 companies doing research into the
following areas:
1. Protease Inhibitor Therapy— A protease inhibitor would be
any substance which partially or completely blocks the ability of
a proteolytic enzyme to carry out its activity. In HCV we have
identified serine proteinases, HS3 helicase and HS5b polymerase.
These enzymes are essential for viral replication.
2. Antisense Based Therapy—Antisense oligonucleotides are
molecules that are highly charged that form DNA- RNA or RNA-RNA
hybrids. The hybrid formation inactivates the viral replication
by preventing the transcription of HCV proteins from the HCV
genome.
3. Ribozyme Gene Therapy—RNA molecules that selectively
degrade RNA, including viral RNA. When directed against HCV RNA
it has the ability to destroy the virus’s replicative
material. These compounds are highly unpredictable and
non-specific and therefore may be potentially toxic.
4. Vaccine Based Therapy— Using DNA-based immunization to
study the immune responses against HCV.
SAMPLE
LETTER
[YOUR ADDRESS] [DATE]
[RESEARCH COMPANY'S ADDRESS]
Dear Sir or Madam:
I am writing to you as a person infected with HCV. I would like
to find out how my friends and I can get more involved in the
clinical trials and sharing of information with regard to HCV
therapy and research.
We are very interested in the work that you are doing on
_________ and would like to see more clinical trials conducted
here in Canada and would appreciate any direction that you can
give us.
Sincerely,
[YOUR SIGNATURE]
[YOUR NAME - PRINTED OR TYPED]
Shall
We Dance?
Come support the Victoria Chapter of HeCSC. Mark the date on your
calendars now: October 10, 1998 (subject to change,) place to be
announced. Bring friends, and dance to the music of the band
"Rukus."
Volunteers are needed for decorations and food. Please call (250)
388-4311 to sign up.
HCV-
The Taboo Subject
Some people may have skeletons in their closets, and when I was
diagnosed with hepatitis C in September 1995, mine all came back
to haunt me. It was in the fall of 1977 that I first tried
injection drugs—cocaine was the first drug of choice. I
would classify myself as an experimenter, rather than a
physically-dependent drug addict. I never learned how to inject
myself, sharing needles with either my heroin-addicted boyfriend
or my girlfriend. When you're young, you do some stupid things
sometimes. I always thought I was being careful, though. Not
careful enough. Eighteen years after I first had a needle in my
arm, I learned during a routine physical exam that I was infected
with hepatitis C, an insidious deadly blood-borne virus that
attacks the liver. I am among the highest-risk group, which is
composed of people who have shared needles to use drugs. The
virus is not only spread by using intravenous drugs but also,
some experts believe, by sharing the straws used to snort
cocaine—a drug many North Americans in their forties and
fifties have tried. Microdroplets of blood, dislodged when a coke
straw bumps the delicate capillaries inside the nose, can be
passed on the end of the straw. Hepatitis C is already an
inner-city and drug-user epidemic. Infection among IV drug users
is estimated at up to 90% and in the prison population in Canada,
hepatitis C infection accounts for a third of the inmates. The
virus has infected not only people who are at the lower end of
the social and economic scale, but also plenty of those in the
middle class. With the prevalence of recreational drug use in the
sixties and seventies, and the two- to three-decade progress of
the virus, many people are just discovering now that they are
infected with this stealth disease, known as "the
dragon." I'm among those tax-paying, law-abiding solid
citizens today paying the price for the sins of my youth. While
IV drug use, past and present, is the leading cause of HCV
infection, other modes of transmission are blood transfusions,
tattooing, body piercing, acupuncture, accidental needle stick
injures to health-care workers with a contaminated needle,
manicures, pedicures, sharing razors or toothbrushes, snorting
drugs, sexual contact, childbirth and breast-feeding. No matter
how low the risk is, the possibility is there. I also have read
that HCV has been found in stored blood from the forties. Some
people go even further implying the possibility of chemical
warfare, a conspiracy. Who knows for sure? I decided after a lot
of pondering to tell my liver specialist at my first visit that I
had used IV drugs in the past. I assumed revealing this fact
would benefit my care and their research. I didn't have to reveal
my sordid history, since the virus was possibly caused by the
injection of gamma globulin that I had received, after I
contracted hepatitis B, two years prior to any drug use. That
makes it acceptable in the eyes of the society. I am disturbed by
this self-righteous attitude a lot of people have towards ex-drug
users and others who don't fit into society's perfect vision. My
mistakes occurred over twenty years ago! Do I have to pay for
those mistakes with my life? I am no less deserving of medical
care than anyone else. I would like people to understand the
stigma involved with being an ex-drug user. I have honestly
admitted to my past history of two years of illegal drug
experimentation to my doctors. It seems irrelevant to the doctors
that I had received a blood product prior to any drug use. The
label is there and I'm stuck with it. It doesn't matter that I
used drugs twenty years ago either. It is frustrating to always
be on my guard, that I am not being overlooked for inclusion in a
treatment program because there are other people "more
deserving." I have come forward to dispel the perception of
former drug-users. With the support of my immediate family, I
have been able to forgive myself for my past transgressions. I am
not that person anymore. People can change to better themselves.
I am trying to see the positive out of the negative. What I have
learned from my past is compassion and tolerance for others. I
have been watching the news and reading the paper daily regarding
the Krever report and the tainted blood issue. I sympathize with
the people who did receive infected transfused blood and hope
there is a light at the end of the tunnel, and you are all
compensated accordingly. My point is to show you the other side
of the coin. I just want everyone to walk in my shoes and
understand my feelings. Injustice is when the mere mention to
someone that I probably acquired HCV through IVD use is met with
a certain demeanour of repugnance. It is like I get pushed back
twenty years over and over. I am suddenly stuck in a mold that no
matter what I'm like today, it doesn't seem to make a difference
with a person's attitude towards me. Especially a doctor's
opinion. I can't change my past. I need compassion and support
just like anyone else. It is important to concentrate on
enlightenment in education, to speak out for research money for a
cure for HCV, and to not exclude people from treatment just
because they may have acquired HCV through drug use. These issues
are just as important as the fight for compensation for the
"innocent victims." More research should be done for
the numerous people that got hepatitis through other means. The
blood scandal is bringing to the forefront the disease which was
not talked about, and hopefully, through the press it is getting,
there will be more funds for research. Today I am a respectable,
middle class, 41-year-old wife and mother of two sons, 8 and 16,
presently living in Toronto, Ontario. I am university-educated,
and over the years I have worked as a nutritional consultant. My
volunteer community service has involved being a parent teacher's
assistant in primary classes, a French language teacher's parent
assistant for grades 7-9, a Beaver leader and group secretary for
Scouts Canada, a Sunday school teacher and church secretary. I
really want more than anything for people to get a different view
of those HCV sufferers who may have acquired the disease from
past drug use. A majority of us experimented decades ago and are
only now manifesting symptoms of the disease. We are the baby
boomers with respectable positions in society today. We have
various careers including teaching, social work, computing,
office work and truck driving. We deserve just as much respect
from doctors and availability to treatment as the next person. No
matter how we contracted this deadly virus, whether through blood
transfusion, unclear reasons, or past IV drug use like myself, we
are all in the same predicament. We are a large group of Canadian
HCV sufferers who deserve mutual respect and all our voices to be
heard. Feel free to e-mail me. I will not judge you but support
you in your struggle not only with this "dragon" but
with the acceptance of you as a person. You are not alone in this
battle.
Smilin' Sandi
FOUR HCV CLINICAL TRIALS IN BC
Dr. Anderson at
604.876.5122
1. Interferon and Ribavirin Combination Therapy
Non-responders or relapsers to interferon alone are being studied
in a combination therapy trial using 3 million units of
interferon injected three times a week (which the patient pays
for) and 1000-1200 mg of ribavirin orally twice a day (which is
paid for by the drug company.) THIS STUDY WILL BE CLOSING SOON.*
This is now done on compassionate grounds, i.e., it isn't a
study.
2. Amantadine Therapy in Combination with Interferon in
non-responders or relapsers.
This trial is looking at amantadine in the treatment of HCV. THIS
IS AN OPEN STUDY.
3. PEG Interferon Trial
Pegylated (PEG) Interferon is a long acting interferon that only
requires a once a week injection. Patients are randomly assigned
to one of two therapies: a) PEG interferon injection once a week
OR b) induction of Interferon at a high dose for one month
followed by the standard dose of 3 million units three times a
week for the duration of the trial. This trial is for a period of
one year and the cost of the drug is paid for by the drug company
and is OPEN to naive patients only (not previously treated with
interferon).
4. Low Dose Maintenance Schedule with Interferon
This trial will begin sometime in the new year and will look at
low dosage maintenance therapy of interferon.
New Vice Chairs
David Smith was chosen Vice-Chair of the National Board of HeCSC
Dr. C.D. Mazoff was elected Vice-Chair of the Victoria Chapter of
HeCSC.
Marjorie
Harris Re-elected President of HepCURE by Darlene Morrow
Marjorie Harris was recently elected president of HepCURE for a
second term. The Hepatitis C United Resource Exchange (Hep CURE )
is a registered non-profit organization. The executive has five
members drawn from the hepatitis c and academic communities.
Their application for federal charitable status is still in
process. HepCURE has a research list on the internet, indexes of
articles on HCV, and provides educational and support group
activities. The internet research group is a closed list of
scientists from various specialities that review the latest
journal articles and discuss the connections between them in the
hope of finding a cure for HCV.
HepCURE’s mission statement is to cultivate an international
network promoting Hepatitis C education, support and research.
Donations go to cover internet and telephone costs at present. In
the future they would like to rent a small office space in Vernon
so that volunteers can help with the ongoing work and to give a
public focal point to work from so that funds can be generated to
aid HCV researchers directly as is done similarly by other large
campaigns for cancer and diabetes.
Hepatitis
C Society of Canada Message from the Chairman of the Board of
Directors
June 17, 1998 The last few weeks have been particularly busy with
compensation issues. This message is being sent to HeCSC Board
Members and Chapter Heads as a way in which to keep HeCSC
volunteers and members up-to-date with the issues. It is expected
that an update will be sent on a bi-weekly basis to all of you
for the next couple of months. Jeremy Beaty, HeCSC Chair,
continues to lead the organisation on compensation matters.
Jeremy Beaty and David Smith, HeCSC Vice-President (Victoria
Chapter Head) attended a meeting in late May in Edmonton of the
Federal/Provincial/Territorial (F/P/T) Working Group on Hepatitis
C. No decisions were made at this meeting; however, it was
important for HeCSC to be there. Thanks to the Edmonton Chapter
for organising a small rally during these meetings. It was widely
covered by the press. HeCSC has begun to investigate the
possibility of establishing a HepC Carrier Compensation Advisory
Group to provide the HeCSC Board with input. More information
will be available in the near future. HeCSC has been invited to
participate in an Expert Panel hosted by Health Canada.
Epidemiologists will present their assessment of the number of
individuals infected with Hep C from blood transfusions. Jeremy
Beaty, HeCSC Board Chair, and Tim McClemont, HeCSC Executive
Director, will be representing HeCSC at these meetings later this
week. The Kitchener-Waterloo Chapter held an informal, private
meeting with The Honourable Alan Rock last week. Chapter Head
Carolyn Cavaney lead the HeCSC delegation for this meeting, where
personal stories of the challenges people faced as a result of
Hep C were recounted to the Minister. Jeremy Beaty and other
members of the HeCSC Compensation Task Force have met with
officials of the Ontario provincial government to discuss and
further clarify the position of the Ontario government on
compensation for all persons infected with HepC as a result of
tainted blood. Jeremy Beaty and Durhane Wong-Reiger (CHS)
appeared on Mike Duffy’s Sunday Edition June 7th to discuss
the issue of compensation. Joey Hache began his Cycle for
Conscience on June 15th in Nova Scotia. He will be cycling across
Canada to increase public awareness about Hep C. He is hoping to
collect One Million signatures from Canadians coast-to-coast.
More details will be available in the June edition of the HeCSC
newsletter. The Webpage to track his progress is:
www.igs.net/~reflect/joey/schedule.htm Debi Ripley, HeCSC Board
Member from New Brunswick, met with the NB Premier and Health
Minister recently. It was a productive meeting and we are looking
forward to a public announcement of support for compensation of
all persons infected with Hep C as a result of tainted blood.
That’s the news for now! If you wish to discuss any of the
above, please feel free to contact the HeCSC national office.
Jeremy Beaty, HeCSC Chair
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: July
29th.
Penticton HeCSC Meetings: Third Thursday of every month, 7-9 PM,
Penticton Health Unit — Board rooms. NEXT MEETING: July
16th.
Kelowna HeCSC Meetings: Last Saturday of every month, 1-3 PM,
Rose Avenue Education Room in Kelowna General Hospital. NEXT
MEETING: July 25th.
Nanaimo HeCSC Meetings: Second Thursday of every month, 7 PM,
Health Unit-Central Vancouver Island, 1665 Grant St. NEXT
MEETING: July 9th.
Vancouver CLF Support Group Meetings: Second Thursday of every
month, 7:30 PM, Nurses’ Residence of VGH (12th and Heather).
Signs will direct you. NEXT MEETING: July 9th. Contact the CLF
681-4588 or Herb 241-7766.
Sunshine Coast Support Group Meetings: First Thursday of each
month, 7:30 PM, Coast Garibaldi Health Unit in Gibsons. NEXT
MEETING: July 2nd. Contact Carol: 886-4298
<ryker@cheerful.com>
Vernon HepCURE Meetings: 1st Tuesday 12-2 PM and 3rd Tuesday 6-8
PM of each month, the People Place, 3402 - 27th Ave. NEXT
MEETING: July 21st. Contact: Marjorie 558-7488
<www.junction.net/hepcure>
Enderby HepCURE Meetings: Last Sunday of each month 2-4 PM for
High Tea, The Raven Gallery, 701 George St. NEXT MEETING: June
28th.Contact: Marjorie (250)558-7488 www.junction.net/hepcure
HOW
TO REACH US:
EDITORS TEL:(250) 388-4311
Joan King-Diemecke joan_king@bc.sympatico.ca
Darlene Morrow hepcbc@sprint.ca http://www.geocities.com/
HotSprings/5670
C.D. Mazoff squeeky@pacificcoast.net VICTORIA
HeCSC OFFICE: hepcvic@pacificcoast.net TEL:(250) 388-4311
http://www.pacificcoast.net/~hepcvic/hepcvic~1.htm
PENTICTON HeCSC: LESLIE GIBBENHUCK TEL:(250)490-9054
bchepc@bc.sympatico.ca
KELOWNA HeCSC:
ELAINE RISELY TEL:(250)768-3573 eriseley@bcinternet.com
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 gjones@qb.island.net (Qualicum
Beach)
HELEN HUBBARD TEL:(250) 245-8759 Ladysmith/Nanaimo)