Amgen Building HCV Support Group Data Base
by Darlene Morrow
Amgen is gathering information for a patient HCV support group
database. If you wish to have your support group listed, please
include the following information:
Group Name Contact Address City State Zip Telephone Number Fax
Number Email Address What day and how often What time Notes-such
as men only, woman only, group size, etc.
For more info call Melissa at: (805)447-3339 Fax: (805)480-1268
Email Melissa at <melissa@amgen.com>
Snail mail: 1840 DeHavilland Drive. Bldg. 36-1-B Newbury Park, CA
91320
ARE YOU GETTING THE BEST
TREATMENT? by Joan King-Diemecke
"Cindy" was diagnosed with hepatitis C. "Don't
worry," her doctor told her. "Your LFTs (Liver Function
Tests) are stable and low. You don't want a biopsy, do you?"
Of course she didn't. However, when her tests showed a gradual
change for the worse, she reconsidered. Although her enzymes had
never climbed above 80, much to her doctor's surprise, her biopsy
showed grade II fibrosis. This is common. She started treatment,
but did not respond, perhaps because she had the disease too
long. Studies show IFN (interferon) works better when begun
sooner.
1 A letter from Leah Hollins, the Assistant Deputy Minister, to HeCSC Victoria Chapter states, "...liver biopsy is expensive, is not appropriate in some patients, and is associated with some morbidity." "Carl" asked his doctor to prescribe interferon for him. His doctor informed him that his enzymes weren't high enough for Pharmacare to approve treatment. Studies have shown that IFN may be beneficial in these cases.
2 Carl had to face paying the cost himself, about $600 a month, and the treatment normally runs for 12 to 18 months. "Jane," a victim of tainted blood, was denied IFN by her local specialist. Her family doctor finally referred her to a specialist at UBC, after a long and tedious battle, and she was able to receive treatment. "Jim" took IFN. A non-responder after 3 months, the doctor took him off treatment, although studies show that even in non-responders, IFN can help prevent liver cancer.
3 "Andrea," another non-responder,
officially qualified for the IFN + Ribavirin combo. She has been
waiting now for 9 months for her local doctor to begin her
therapy. In the meantime, her disease is progressing.
"Marian" was a partial responder to IFN, and a complete
responder to the combo, but she relapsed upon finishing the 12
month treatment. She would like to try treatments which have
shown promise elsewhere, such as the more effective high-dose
IFN4, IFN combined with thymosin, or consensus IFN, but they are
not yet available here in clinical trials. Not all hepatitis C
sufferers are suited for treatment, and even those who are may
not wish to be treated. Even those who do wish to be treated
often have their desires thwarted by the government's worries
about cost. This is where we, the infected, must step in, to
ensure our best treatment. The AIDS groups in the US have
pressured the FDA into fast-tracking the approval of the drugs
that may save their lives. No one is going to do this for us. We
must step in—each one of us—and take action, as we have
with the compensation issue. We must write our MLAs and MPs, and
other politicians who can influence the bureaucrats responsible
for the decisions that will affect our treatment options. (You
can get their addresses from your local support group.) We must
write to the pharmaceutical companies, urging them to bring
clinical trials here to Canada. (You can find a sample letter and
addresses in this month's newsletter.)
Remember: Compensation is satisfying; a cure is forever!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
1 M. Sata, M. Kage, O. Inoue, et. al., "Duration of chronic
HCV infection and efficacy of interferon in chronic hepatitis C
patients with a history of blood transfusion." Kansenshogaku
Zasshi 71(5) (May 1997): 405-411.
2 E. Orito, M. Mizokami, K. Suzuki, et. al.,
"Interferon-alpha therapy for individuals with normal serum
alanine aminotransferase levels before treatment." J
Gastroenterol Hepatol 12(1) (Jan 1997): 58-61.
3 T. Ichida, "Risk-factors and the effect of interferon
therapy in the development of hepatocellular carcinoma - a
multivariate analysis in 343 patients." Journal of
Gastroenterology and Hepatology 12(2) (Feb. 1997): 149-155.
4 P. Ferenci, R. Stauber, R. Fiedler, et. al., "Dose
increase augments response rate to interferon-alpha in chronic
hepatitis C." Dig Dis Sci 41(12 Suppl.) (Dec. 1996):
103S-108S.
CAN HCV BE TREATED?
HEPATITIS C - A SILENT EPIDEMIC
Introduction:
The estimated number of new hepatitis C virus (HCV) infections
annually in the United States is approximately 150,000 although
the true incidence is probably greater. Screening of healthy
blood donors indicates that the minimum prevalence of chronic HCV
infection is 1 per 200 in this low-risk population. The true
prevalence may be closer to 1.0 - 1.5%. An estimated 3 - 3.5
million Americans are carriers of the hepatitis C virus.
Transmission of Virus:
Transfusion of blood products used to be the primary source of
transmission of the virus. Use of volunteer donors and screening
of blood for the antibody to the virus has reduced the risk of
acquiring hepatitis C from a transfusion to 1 per every 3000
units of transfused blood. Currently only 4% of patients with
chronic HCV acquire the infection by blood transfusion, hence
screening of transfused blood for HCV contamination is unlikely
to reduce the prevalence of chronic HCV. Thirty-eight percent of
chronic HCV infections are due to intravenous drug use, 1% are
dialysis patients, 10% are patients with a history of sexual
contacts or a household contact with someone with hepatitis C.
Although 30 - 45% of infected patients deny any discernible risk
factors for the disease, many of these individuals have histories
of high risk behaviors such as multiple sexual partners, illicit
non-intravenous drug use or prior imprisonment.
Occupational Hazard:
Hepatitis C is a known occupational hazard. Two percent of cases
of hepatitis C are due to occupational percutaneous exposures,
mostly in the form of needle sticks in health-care workers. The
risk of acquiring the virus from a single needle stick from an
infected individual is estimated to be approximately 10%. There
have been numerous studies of the prevalence of hepatitis C in
different health-care populations. Some groups such as oral
surgeons who are often exposed to aerosolized blood may have a
prevalence of HCV as high as 10%, 4 - 6 times the national
average. Dialysis and operating-room nurses are higher risk than
non-surgical hospital personnel with prevalences ranging from 1.5
to 4%. The majority of infections with HCV are clinically silent.
The infected individual may have no symptoms for 30 - 40 years.
The infection is often discovered accidentally during routine
physical examinations or during applications for life insurance.
The disease will occasionally present as new-onset liver failure
or liver cancer. The natural history of chronic HCV disease is
still being defined. The virus has only been identified and
sequenced within the last four years. It is generally accepted
that 20 - 30% of patients with chronic HCV will progress to
cirrhosis (scarring and malfunction of the liver), and liver
cancer develops in about one fifth of patients with cirrhosis.
The slowly progressive nature of this disease is apparent from a
retrospective study of post-transfusion HCV showing that chronic
hepatitis, cirrhosis and liver cancer developed after a mean of
10, 21 and 29 years respectively. Once cirrhosis develops the
risk of liver cancer is from 3 - 6% per year. HCV accounts for
25% of patients undergoing liver transplantation. The best
current data suggest that the risk of developing clinical liver
failure is 5 - 15% and the risk of dying from liver-related
complications 3 - 9%. Conversely, 80 - 90% of infected
individuals will probably live normal life spans without
symptomatic liver disease.
Can HCV Infection be Treated?
The goal of anti-hepatitis C therapy is to ameliorate symptoms
and halt the progression of disease to cirrhosis and possible
liver cancer. Alpha 2b-Interferon was licensed for the treatment
of chronic hepatitis C in 1991. It is the only agent which has
shown efficacy against the virus. Although 40 - 50% of patients
respond to a 6 month course of treatment with normalization of
liver enzyme levels, the relapse rate after therapy is at least
50% and as high as 80%. Unfortunately, three to four years after
successful interferon treatment only 8 - 15% remain free of virus
and have normal liver function tests.
Interferon therapy is associated with considerable morbidity. It
must be administered subcutaneously. At the beginning of therapy
60 - 80% of patients have a flu-like illness which resolves
within three weeks. Additional side-effects include irritability,
fatigue, depression, anorexia, nausea, rashes and hair loss.
Migraine headaches may increase in severity and frequency. A
history of anxiety or depressive illness is a relative
contraindication to interferon treatment.
At current Food and Drug Administration approved dosing 85 - 92%
of treated patients will not ultimately benefit from interferon
treatment. Since the best current estimates are that clinically
significant disease will occur in only 5 - 15% of infected
individuals, the vast majority of infected individuals will not
benefit from interferon therapy. Assuming a "cure" rate
of 8 - 15% in the 5 - 15% who would potentially benefit from
treatment, one comes to an estimated improvement in outcome in
only 0.4 - 2.25% of patients. Even this higher number is doubtful
since the group with the most aggressive disease tends to have
the lowest response to interferon.
Recent studies indicate that a mere six months of treatment at
three million units may be suboptimal. Treatment with high doses
(up to 30 million units per week) for 12 - 18 months have
produced "cures" in 22 - 45%. To get sustained
remission in over 50% of patients on a consistent basis may
require several years of interferon therapy.
Summary:
In summary HCV infection is a serious viral epidemic affecting
1.5% of the United States population. Health-care personnel are
at risk for occupational exposure, especially those exposed to
blood products on a regular basis such as dialysis and operating
room nurses. Although treatment is available it is associated
with considerable expense and morbidity and fails to cure the
disease in up to 90%. The infection can lead to liver failure and
liver cancer in a substantial minority of infected individuals.
The disease is becoming an important issue in workers
compensation for health-care employees. Extensive research is
underway in an attempt to develop more effective therapies.
This article brought to you by Dr. Steven E. Lerner &
Associates & The 'Lectric Law Library™ http://www.lectlaw.com/med/
med17.htm
FROM THE OKANAGAN
Cycle for Conscience - Joey Hache Crosses Canada
Following the ‘free vote’ on April 28th in the House of
Commons, to extend compensation to all hepatitis C victims of
tainted blood, Joey told the Prime Minister—“I am your
conscience.” Joey told him he would not go away until the
government extends compensation to all victims. This summer Joey
will be biking across Canada to raise awareness about hepatitis C
in general and the tainted blood issue in particular. His goal is
to collect one million signatures in support of extending
compensation equally to all tainted blood recipients. “We
were all infected the same; we should all be treated the
same.” Joey Hache, a fifteen-year-old young man decided
there was only one way he could really make a difference. So he
decided to spend his summer enjoying the freedom that youth
brings on a bicycle—crossing Canada. Everyone is invited to
join in, as Joey rides across Canada. This is a perfect time to
show Canadians that children have hepatitis C, too. Families are
invited to join the ride and to encourage children to show
support for Joey. When he arrives in your town, please be there
to welcome him, and arrange a party, complete with politicians.
Joey left Nova Scotia on Monday, June 15th, plans to arrive in
Ottawa for July 1st and then head west. He will be travelling
along the Trans Canada Highway, making stops to educate people
about hepatitis C as well as to collect the one million
signatures he has set as his goal. Please help Joey attain his
goal by copying the petition form. Pass it around, fill it out
and then either hand it to him when he gets to your town or send
it directly to his home. You can visit his Website for petitions,
itinerary, hepatitis C facts and other info about Joey at:
http://www.igs.net/~reflect/joey/schedule.htm. Or you can contact
his Mom, Connie at (613) 445-0467, Jo-Anne Manser at (613)
828-3636 or Leslie Gibbenhuck (250) 490-9054 for further
information. If you should decide to plan something along the
way, please make sure you let his Mom or Jo-Anne know so they can
add your stop to the itinerary as soon as possible. Another new
web site has been launched. It is there for all blood injured
Canadians. As well, we have started the Canadian Blood Injury
Coalition, an organization to fight for the rights of all
transfused Canadians. We will be fighting for accountability in
Government, so another such tragedy never happens again. You can
find the web site at http://www.igs.net/~reflect/ Have a great
summer. Until next time ...
Take good care of yourselves,
Leslie
Duract: Painkiller Linked to
Deaths is Withdrawn
UPI Science News Monday June 22 2:54 PM EDT
WASHINGTON, June 22 (UPI) - The manufacturer of the painkiller
Duract says it it withdrawing the drug because of reports of rare
severe liver failure and deaths. Wyeth-Ayerst Laboratories, of
St. Davids, Pa., says Monday it is advising doctors to
discontinue prescribing and dispensing the drug, generically
known as bromfenac, immediately. The drug was approved in July
l997 for management of acute pain for 10 days or less. The
company says the reports of deaths and injuries were associated
with long-term use, beyond 10 days. In a statement, the company
notes the drug was never approved as a treatment for longer term
use for chronic conditions such as osteoarthritis or rheumatoid
arthritis. Also, it says, no cases of serious liver injury were
reported in clinical trials. But because researchers recorded a
higher incidence of liver enzyme elevations in patients treated
long term in clinical trials, the product was approved for use
for 10 days or less. The information about the elevated liver
enzymes was included in the product labeling. After Duract was
marketed, the Food and Drug Administration and the company
received reports of several cases of rare severe hepatitis and
liver failure, some of which required transplantation, in
patients taking the drug for more than 10 days. In February l998,
in response to the reports of severe liver failure, and
transplants, the FDA and the company strengthened the warnings in
Duract's labeling with a special black box warning and
Wyeth-Ayerst issued a Dear Doctor letter. The revised label
re-emphasized that patients should not take the drug for more
than 10 days and alerted physicians and other health care
professionals to the cases of severe hepatitis and liver failure,
and cases in which patients required a transplant, in patients
who had taken Duract. Despite these efforts, the agency and the
company continued to receive reports of severe injuries and death
with long-term use of Duract. In the statement, the company says,
given the availability of other therapies, the FDA and
Wyeth-Ayerst concluded that it would not be practical to
implement the restrictions necessary to assure the safe use
limited to less than 10 days of Duract. The company and FDA
agreed that it would be prudent to withdraw the drug from the
market. Questions about withdrawal of Duract can be addressed to
Wyeth-Ayerst's hotline at 1-(800) 281-9260.
Copyright 1998 by United Press International All rights reserved
MELATONIN WARNING
"Is melatonin associated with the development of autoimmune
hepatitis?"
Melatonin is a neurohormone produced by the human pineal gland
that plays a role in the regulation of many physiologic processes
and has been proposed as a therapy for everything from insomnia
to metastatic carcinoma. Melatonin is available in the United
States without prescription, and adverse effects appear to be
uncommon. However, because melatonin appears to have
immunomodulatory properties, the potential exists for the
development of autoimmune-related side effects. We describe a
patient in whom characteristic clinical and laboratory features
of autoimmune hepatitis developed after beginning melatonin
therapy for the treatment of insomnia. Liver biopsy demonstrated
histologic features of autoimmune hepatitis. Rapid symptomatic
and biochemical improvement resulted from the initiation of
immunosuppressive therapy; however, hepatitis recurred after the
withdrawal of steroid therapy. The temporal relation observed
between melatonin use and the development of autoimmune hepatitis
raises the possibility that the drug might be involved in the
pathogenesis of this patient's autoimmune disease.
Hong YG, Riegler JL Department of Gastroenterology, Wilford Hall
Medical Center, Lackland Air Force Base, Texas, USA. J Clin
Gastroenterol 1997 Jul;25(1):376-378 PMID: 9412927, UI: 98074407
A heartfelt thanks is
extended this month to the people at CompuSmart in Victoria, for
exceptional discounts on computer software and hardware. Thanks
to Brian Norton and others who helped lower prices and get us the
tools we needed to keep all of us informed and up to date.
-------------------
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., Mid-Island Realty, Questar
Holdings Unity Business Machines Ltd.
--------------
SUBMISSIONS:
The deadline for any contributions of hepc.bull is the 22nd of
each month. Please contact:
Joan King-Diemecke at Tel (250) 388-4311,
<joan_king@bc.sympatico.ca>,
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
hepc.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
--------------------
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
-------------
REPRINTS Past articles are available at a low cost. For a list of
articles and prices, write to the hepc.bull, via Darlene Morrow
at 1203 Plateau Drive, N. Vancouver, BC, V7P 2J3 < hepcbc@sprint.ca>
CUPID'S CORNER
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 checks payable to HeCSC
Victoria Chapter, and mail to HeCSC, Attn. Squeeky, 1611 Quadra
St., Victoria, BC V8W 2L5. 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 check for a
donation of $2, if you can afford it. Mail to the same address as
above.
Disclaimer: The hepc.bull and/or HeCSC cannot be held responsible
for any interaction between parties brought about by this column.
Ad No. 7
Sense of humour? Are you intelligent, articulate, fit and funny?
So am I. What I miss is a romantic buddy to go out and play with.
Slim, brunette, 48, financially secure, looking for SWM 48 to 55,
Vancouver-based, for whatever.
The Quiet and Deadly Game by
Connie Lake
As I laid in my hospital bed
And watched the blood drip into my veins
I was not aware of the risks
And the quiet and deadly virus was born.
In the new vessel it called home
It silently began to invade
Never quite showing its vengefulness
While it played its quiet and deadly game.
When I was caring for my babies
It watched and waited
For just one little chance
To continue its quiet and deadly game
When I made love to my husband
It watched in hopefulness
Waiting for for the opportunity
To play its quiet and deadly game
As the years followed
I would feel achy and tired,
Not aware my body had an invader
Playing its quiet and deadly game.
Then one day I turned yellow
And felt pain beneath my ribs
I could no longer get out of bed
And the virus began to show its face.
While having routine bloodwork done
My liver enzymes began to climb
I was tested for hepatitis C
And the virus was no longer quiet
For seven years it conquered and destroyed
It made my liver its home,
Unwilling to release its strong grip
And continued its quiet and deadly game.
When I was found positive
I had two choices in life.
I could continue to be its victim
Or I could be a survivor in the quiet and deadly game.
I chose to stand up and fight.
I would learn to be strong.
I would not allow it to have my family
And I would not let it attack society through me.
I give my body the best fuel to fight.
And through the desperation and pain
I continue to walk through the fog
Because it is my turn to play the quiet and deadly game.
Keray Regan Sings for Hepatitis C
by Darlene Morrow
Country Music singer/songwriter Keray Regan gained local fame in
1948 for his hits My Home By the Fraser and Poor, Poor Farmer.
In 1986 Keray received tainted blood (HCV) during open heart
surgery. After struggling with numerous health problems, Keray
decided to write a song to raise HCV awareness and funds for
research. The CD has two songs on it- I have Hepatitis C from
Tainted Blood They Gave to Me and Thank the Good Lord. You can
email Elaine, Keray's long time friend at
<eljoco@junction.net> for more info or call Keray at
250.503.1595
In addition, Keray has donated 25% of the sales from his new
country/western tape, "How's Everything at Your Place."
towards hepatitis research, education and awareness through the
HepCURE Society.You can order a copy of this tape from Tyra Regan
McMahon at 250-549-3359.