HepC BC
Correction: In last month's issue of the hepcBC.bull I stated that there
was now an animal model for HCV. While it is true that they have been able
to infect a chimpanzee with HCV, the virus must first be bound to E. Coli
to be transmitted. This is not a true and exact representation of the HCV
in humans.
Darlene Morrow
Four years ago, I found out that I have hepatitis C. Since then I have not
worked and I am on Income Assistance. At various times in the past 4 years,
I have required some home support. Finding out how to go about getting
some assistance with my household duties has been trying at times, but I'm
hoping that by sharing my experience in this matter and passing along the
information, that other Hep C'ers will benefit and find it easier than I
did. If you are currently on Income Assistance and you need a temporary
home support worker, call your Financial Aid Worker (FAW) and discuss your
needs. I was required to get a letter from my doctor (I chose my
specialist.) The letter had to state my specific medical condition, what
specific help I required, the number of hours per week, and the duration of
help needed (i.e., 6 weeks, or 2 months.) Currently the Homemakers' Policy
(in the FAW's Policy Manual) is in revision. I was told recently that the
FAWs will currently follow the policies in the manual, but that in the
future there will be changes. I recently researched how to go about
getting long-term care, which is handled through the Public Health Unit (on
Cook St. in Victoria) Tel. 388-2230. When I spoke to Gloria at Central
Intake, she gave me the following information: A letter from your doctor(s)
is required, stating what chronic health problem(s) you have. The
letter(s) are looked at by someone in Central Intake, and a decision is
made as to whether or not to go ahead with a referral. Once a referral is
made, it is passed along to a case manager who folllows with a home visit
to assess each individual situation. Long-term care deals only with
personal care (i.e., bathing, dressing.) They do not deal with household
duties (i.e., cleaning.) It was mentioned that if meal preparation should
be required, there are 3 companies (Victoria/Vancouver) that could help
with that need:
1. Meals on Wheels - Victoria - 385-5919 Provides - Hot lunches delivered
(11-1) Monday-Friday $4.80 Frozen meals are delivered on Fridays,
as there is no weekend service. 24 hrs. notice is required. Delivery
included.
2. Better Meals - Vancouver (Providing meals in Victoria, too) (604)
299-1877 Provides - Frozen dinner meals $5.25 Breakfast, sandwiches,
salads, pies Individual dinners and
snacks $2.00 to $4.00
3. Chef on the Run - Victoria - 595-3151 (Providing delivery also to
Brentwood Bay and as far as Parksville once a week. There is
also a store in Sidney.)
Provides - Hot meals $6.00 Delivery is extra Low fat; Low salt Meals
suitable for diabetics and people with heart conditions Menus provided in
Wed. edition of Victoria, Saanich &
Esquimalt newspapers.
I hope that this information will be
helpful to others.
Renee Whitley
ANALYSIS/ Ribozymes
Give Hepatitis-C Virus
The Ax November 3, 1997
Nikkei English News via Individual Inc. : (Nikkei Industrial Daily, Oct.
30, 1997)
TOKYO (Nikkei)--Separate research groups from the Tokyo Medical and Dental
University and Osaka University have synthesized ribozymes that prevent
proliferation of the hepatitis-C virus by attaching to the genetic material
of the virus and cleaving it in half. The successes suggest a type of gene
therapy to treat C-type hepatitis and cirrhosis of the liver. Ribozymes are
the name given to a class of RNA molecules that act as enzymes and have the
ability to cleave other strands of RNA and also DNA at specific sites. The
virus responsible for C-type hepatitis is a kind of RNA virus, which means
it contains its genetic information in a strand of RNA rather than in a
strand of DNA, as is most often the case. The virus infects liver cells and
directs those cells to make the proteins coded by the RNA so that more
copies of the virus can be assembled. Both research groups designed their
ribozyme molecules to attach to a specific site along the RNA of the
hepatitis-C virus and cut the strand in half, destroying the viral
blueprint for reproduction. The Tokyo group, working in cooperation with an
American team from the University of Connecticut, synthesized a ribozyme
that attaches near the start of the virus RNA. When this ribozyme and
simulated virus RNA are inserted into human liver cells in a 10:1 ratio,
the cells produce half the amount of viral protein they would if the
ribozyme were not present. The Osaka group targeted another place on the
RNA with its ribozyme. In tests this molecule reduced viral protein
production in human liver cells by 70%. However, this team has not yet
confirmed that the effect was due to
the RNA being cut apart.
Nihon Keizai Shimbun, Inc. -- 10-31-97
[Copyright 1997, Nikkei America]
On October 20, 1993, my life took a different path from the one I had
previously been taking. Today, October 29th, 1997, I took a moment to
reflect upon the path I came to find myself traveling. Actually, all my
thought processes were imbued with thinking about it. It's always easier
to look back than it is to look forward.
Hindsight is 20/20 (far different from my own!) When I came out of
intensive care, only to discover that my esophagus had burst, that I was in
end stage liver disease, and that it had been caused by hepatitis C, I
thought my life was over. In hindsight, I realize it was just beginning,
although it took over two years and a liver transplant to get comfortable
with the idea. I realize now, in retrospect, that when one door closes,
another one opens, and in my case, the one that opened did so very widely,
and into a world that was vastly different from the one that slammed shut
on that fateful day. Oddly enough, one of the first things I thought about
was whether or not there was a support group for people with HCV. I was
not to find out for another year, and it took yet another year before I
became actively involved in the Hep C Society, when Dr. Powell, our
founder, asked me to. This was 3 months after my transplant, and I was
still trying to understand the grave new world I was unceremoniously tossed
into. As a matter of fact, I'm still trying to figure it all out, because
truth only reveals itself in small doses and occasional false starts, and
sometimes when you're not expecting it. Suffering is a by-product of this
disease. We all suffer to a greater or lesser degree, depending how
symptomatic we are.
When I was waiting for my transplant, I didn't say, "Why me?"I said, "Why
not me?" Why should I be exempt from suffering the slings and arrows that
life hurls at anything or anyone living? In retrospect, this helped me a
great deal because it reduced the sense of alienation that comes from
having a chronic illness. I felt a sense of connectedness to life that I
had never experienced before. Words cannot really express the feeling I
had, but after my transplant, those feelings were further validated when I
saw how other transplant recipients responded to their disease. So does
that mean suffering is good? I can't answer that question for anyone else,
but in the context of HCV and liver transplantation, for myself, it didn't
do any harm. The word suffering never entered my vocabulary, as in, Boy,
am I suffering, but suffer, I did, and suffer, we all do. Enough on this
for now.
Dave Smith
Editor's note: This article is reprinted, with apologies,from the October
issue because of the large number of typographical errors that appeared due
to my forgetting to proofread.
JKD
What options are available to you when you find that you are no longer
capable of working? There are two courses of action. 1. Sick Benefits-
this can be through your employer and/or through the government's sick
benefits from EI (formerly UI - unemployment
insurance).
2. Canada Pension Plan Disability
Before you Start:
1. Your doctor must agree that you cannot work full time for you to
collect either Sick Benefits or CPP Disability. Only you know how sick you
really are. Your doctor will encourage you to continue working for many
reasons. One of these is that depression and related problems are often
seen in people that have been forced to give up their jobs. Much of our
identity is bound up in what we do for a living. When we no longer
contribute in that way, many people begin to doubt their self-worth. The
ensuing depression can be very difficult to deal with. But, if you are sure
that you are no longer able to work, present your case to your physician in
a reasonable and honest way. You should be able to work together and do
what's best for you.
2. Your Sick Benefits are based on the income you earned prior to applying.
Many people have gone on part time instead of full time (myself included),
hoping that the reduction in hours will allow them to continue working.
This often doesn't work out and the individuals apply for Sick Benefits
which are now based on their part-time
earnings.
Sick Benefits
Your employer's Sick Benefits will usually run within a given time period.
The length of time for which you are covered will depend on your employer's
package. When this runs out you can apply for EI Sick Benefits. They run a
maximum of 15 weeks.
Canada Pension Plan (CPP) Disability
1. Be prepared to be turned down. This seems to happen often. Only 7% of
those people turned down actually appeal. Defend your rights!! Include
the decision to appeal in your personal
plan.
2. You must have your doctor's backing! Be sure. You can get a copy of
your file through the Privacy Act much quicker than on your own. If you go
through the Privacy Act they must respond within 30 days or be in violation
of the Act.
3. You must be able to prove that you can not work even 50% of the time at
any kind of job whatsoever. That includes career changes to sedentary
work. You must be able to say that you can do NO type of work and will
never be able to. Otherwise this becomes a matter of vocational
rehabilitation as opposed to a disability
pension concern.
4. Be prepared for what may seem like an invasion of privacy. The
Disability Form includes a page that contains your explanation of the
difficulties/ functional limitations in bowel and bladder habits, personal
needs, remembering, concentrating, sleeping, and household maintenance, to
name a few.
Phone: 1-800-277-9914 Human Resources Development Canada, CPP and OAS
Programs, P.O. Box 1177, Victoria,
BC, V8W 2V2
Disability Benefits FROM THE CPP INTERNET
SITE <http://www.cpp-rpc.gc.ca/>
A disability pension is provided to CPP participants who are unable to work
due to a severe and prolonged physical or mental condition. Disability
pensions are payable until age 65 (when they are converted to retirement
pensions) or until recovery from the disability. To be eligible, the person
must have made CPP contributions for at least five of the last ten calendar
years, or two of the last three calendar years. The chief actuary projects
that payments under the disability benefits in 1996 will be some $3.3
billion, or 17 per cent of total CPP expenditures. The amount of disability
benefit paid is based on two portions: a flat-rate portion, and an
earnings- related portion, equal to 75 per cent of the retirement pension
that the contributor would have received at age 65. The maximum monthly CPP
disability benefit in 1996 is $870.92.
Disabled contributor's child's benefit: Each child of a CPP contributor who
receives a disability pension is also entitled to a benefit, as long as the
child is under 18, or between 18 and 25 and is attending school full time.
The monthly benefit payment in 1996 is $164.17 (the same as the orphan's
benefit). Payments in 1996 will total some $329 million, or almost 10 per
cent of CPP disability expenditures.
by Darlene Morrow
SHARING SUCCESS by
Darlene Morrow
Three years ago I missed my first Khahtsahlano race in 6 years. That was
when I first became ill. My husband refused to run the race without me,
preferring to wait for me to get better. But the next year we had to deal
with the possibility that the still undiagnosed illness might not go away.
And my husband ran the race without me. That was hard. Standing on the
sidelines watching everyone else doing what I wanted to do. But I could
barely walk for a half hour never mind run! But I felt like my life, as I
knew it, was slipping away.
The next year I was diagnosed with HCV and we had to come to grips with the
uncertainty of this disease. By December '96 I was forced to quit work
because of the fatigue and other HCV related problems. My life after HCV
did not resemble my life before. I had to change so many things-anything to
try and feel better.
As I started the interferon and later added ribavirin, I decided that this
disease had interfered enough in my life. Even if it was the only thing I
could do in a day, I was going to start running again. And so began the
slow process of building up my endurance. I would get up to a certain level
of training and then go through a bad phase with the HCV and have to stop.
Weeks later I would start all over again. It became a lesson in listening
to my body. Some days I could run what seemed like forever and on others I
could barely squeeze out a half an hour. And on still other days I would
walk or rest. But I never gave up.
On November 16 '97 I started that long awaited Khahtsahlano run-a 15km
distance. I didn't care if I had to walk because I got too tired. This
disease has taken too much away from my life. It was time to take
something back. As I rounded the corner and saw the finish line, I started
to cry. I cried because I am not this disease. And I made it!! One small
step at a time. I cried in happiness and celebration of this thing we call
the human spirit. So strong. So good. As I passed underneath the Finish
sign a woman hollered to me, "Good effort!" I smiled and thanked her,
thinking to myself-you don't know the
half of it. :-)
Now you'll have to excuse me while
I go have a nap.
by Natalie Rock, RN, BSN Hepatology Clinical Research Nurse Dept. of
Medicine U.B.C. Vancouver General Hospital
Div. Gastroenterology
Question: What about the flu shot
for someone with HCV?
Influenza, more commonly known as the "flu," is caused by a virus that is
spread through the air from person to person or by direct contact with
fluids from the infected person's nose or mouth. Symptoms include fever,
muscle aches, headaches, runny nose, sinus congestion, nausea, vomiting and
diarrhea. Complications may arise from contracting the flu because it
lowers the body's ability to fight other infections. There are some people
who are more at risk of this than others, including children and seniors,
or those who have a compromised immune system. As well, people who have
diabetes, anemia, cancer, heart disease, lung disease, or kidney disease
are at a higher risk of developing complications if they contract the flu.
Statistics from the Ministry of Health report that more than 1000 Canadians
die every year from influenza or its related complications. Fortunately,
there is a flu vaccine that protects against influenza viruses in up to 70%
of those vaccinated independent of exposure to various strains. The
vaccine should be given in November prior to the start of the "flu season"
so that your body has time to develop antibodies. The vaccine requires
annual revaccination to maintain protection from one year to the next.
Local Health Units will provide the vaccine free of charge to those >65
years young, residents of nursing homes or chronic care facilities, persons
with chronic lung, kidney, or heart disease, diabetics, those with cancer,
anemia, immune deficiency (including HIV), those under 18 and on chronic
aspirin therapy, household members of any of the above high risk groups,
and health care workers. For those wishing to purchase the vaccine, it can
be obtained from a pharmacist for approximately $8, no prescription needed.
The vaccine contains egg protein; therefore, those who are allergic to
eggs or egg products should not be vaccinated. There is no reason to
believe that the flu vaccine will adversely affect patients with hepatitis
C, thus there is no restriction for these patients to receive the flu
vaccine.
Of interest is the fact that hepatitis C may stimulate the immune system
and thus actually provide resistance to the flu. As well, many patients
with HCV on Interferon (an antiviral drug), have reported that while on
treatment they did not get the flu.
TO WHOM SHOULD
COMPENSATION BE GRANTED?
To debate whether some people should qualify for compensation because they
have developed severe medical problems while others not qualify-even though
they test positive for hepatitis C, because they do not manifest major
health symptoms right now-is to deny the fact of wrongdoing on the part of
those responsible for the blood supply. Each person transfused with
tainted blood was wronged, regardless of present state of health. The real
issue is, did they, or did they not, all of them, regardless of present
health condition, receive blood that had not been tested, despite the fact
that testing procedures were in existence at the time? To say that some
people who test positive for hepatitis C should qualify for compensation
because they suffer health problems as a result, and others not receive
compensation because their health is presently stable, assumes that such
people do exist. Is hepatitis C a deadly virus, or is it not? Has it been
proven that anyone can have a deadly virus like Hep C coursing through
their veins with absolutely no health damage? If the immune system is
continuously working to attempt to overcome the virus, is it not being
compromised when run-of-the-mill infections, flus, and colds are
experienced? It is quite conceivable that ordinary "bugs" are harder to
eliminate from one's system if the immune system is already concentrating
on a chronic virus over year after year. Suppose that a Hep C positive
person exists who suffers no ill effects and will never exhibit any
health-related problems (I'd really like to meet such a person): what about
their peace of mind? They know that they carry the potential for health
problems. That has to be a burden. One Hep C victim admitted that one's
outlook on life changes the moment they know they are infected. They know
they were a part of a cold-hearted, calculated business decision that put
financial considerations ahead of the value of life. They carry proof that
the blood system was not safe-which is, or should be, distressing and
disconcerting to us all. And what about some other peace-of- mind issues:
contaminating family members, friends, healthcare workers, or emergency
teams such as fire, rescue, police, EMT, etc., should they ever be involved
in an accident? When one becomes a known Hep C carrier, public health
officials ask questions with respect to sexual partners, family members,
and other long-term inhabitants of the household. Obviously they have
concerns about sexual and household transmission to ask and record such
information. Shouldn't the infected person also be concerned about such
possibilities? No one ever mentions the loss of freedom to married couples
who must practice some methods of protecting the uninfected partner for as
long as they live together. Or how about the inability to purchase life
insurance or take out mortgages, or business loans? I'd like to see
lenders who would negotiate loans with those testing Hep C positive even
though they presently manifest no symptoms. Lots of Hep C infected people
might like to know that information in order to rush out and buy life or
travel insurance, or increased health insurance or to take out a mortgage
or a business loan. To await a decision that, at some point in one's slow
but certain demise, there will be some benchmark criteria to qualify for
compensation, is to ride a pretty slippery slope. Reluctant compensators
might be expected to increase the necessary qualifications at some future
time. And, how can a well, uninfected person make a decision as to how
many qualifying symptoms make one "sick enough" to qualify anyways?
Perceptions of what others think and how they react to news that one has
become infected with Hep C can never be predicted in advance. One infected
lady told the writer that most of her friends "hit for the hills" when they
found out. The shunning which is part of human nature, even to someone who
assures their acquaintances that they "feel all right," certainly exists.
The isolation, rejection, and powerlessness associated with disease are
very real. To decide that one's illness has not yet progressed enough to
qualify for compensation is to deny what, at least in North American
society, is somewhat of a normal "right": to enjoy retirement. Ask anyone,
as of Feb. 27, if they are not exhausted by all the RSP and retirement fund
ads in the media. We have all come to "expect" (barring an "act of God,"
dread disease or accident), a retirement. If not at 55, because we
invested early and wisely in some mutual fund, then at least by 65. No one
would think that we should deny some people a retirement at, say 65,
because "you'll still feel well and don't qualify for a pension until you
feel sick; then we'll give you your pension." Most Hep C infected people
won't make retirement age-the time our society "rewards" loyal and faithful
contribution, and the time we all look forward to-or must, for investment
and retirement plans to be advertised so heavily toward the end of February
of each year as the deadline for contributions approaches. Someone who
does not know how long (tomorrow? next year? five years?), might want to
slow down and protect that precious health state and enjoy whatever time
they have left. Some to whom compensation is awarded might choose to change
occupations to reduce stress (extremely hard on patients with compromised
immune systems), to move to less physical labour as energy levels decrease,
or to move from occupations dangerous to the liver, such as those jobs
where the employee is exposed to chemicals or hazardous substances which
put an extra burden on an already failing liver. Or, for those who have
become unemployed because of fears by the employer that contamination of
others might occur (the healthcare system or the food industry, or anywhere
that infected employees are in close proximity to other employees, where
the danger of casual transmission exists), those with stable health
conditions might seek retraining with an education allowance. Those whose
occupation requires long-term planning, such as those who are
self-employed, are put in extremely difficult positions by the news that
they are infected. How does one plan for the future when one doesn't know
how long that will be? The unexpected can happen to anyone, but one can
expect the deterioration of health from the moment of transfusion with
blood tainted with Hep C. What about the effect on family members? Of
course there is stress, pain, suffering, and grief related to watching a
loved one suffer and their health deteriorate. In each story of tainted
blood there is the infected, but also the affected, the family. Knowing
that one lives day-by-day with a deadly virus in the household is
stressful. Watching the health and strength of a loved family member
deteriorate is stressful. Wondering about the future is stressful. So is
wondering when, and if, justice will finally be served. Affected families
are, in some ways, dysfunctional families. Coping mechanisms must be
adopted to deal with Hep C in the family. Family members take on added
responsibilities, decisions, physical tasks, financial burdens, and time
commitments to learn about the disease and attend medical appointments.
There are changes in lifestyle, goals and priorities. That's in the
"ordinary" family. In the self-employed family, especially where the major
breadwinner and decision-maker is infected, healthy family members find
themselves taking on ever-increasing responsibilities and duties, all the
time wondering how long this can go on. To whom should compensation be
granted? Anyone who was transfused with Hep C tainted blood, regardless of
present state of health. That some suffer greatly while others experience
only mild health problems does not negate the fact that all were given "bad
blood." If we say that some shouldn't qualify for compensation because
their problems aren't major, we minimise the fact that someone or some
agency or agencies made a conscious decision to endanger lives for the sake
of bucks. To make compensation conditional is to say it was "okay" to use
tainted blood. Are Hep C sufferers seeking compensation trying to get
something they don't deserve (i.e., some monetary recognition of their
plight)? No. They already got what they don't deserve-a deadly virus from
a blood system that failed them. Big time! Those who think it's such a
good deal-easy money, a free ride-should have gone and begged a unit of
untreated, Hep C contaminated blood. Alas, it's all gone-they used it all
up on unsuspecting victims who must now negotiate for compensation when
they don't feel well, are dying, or just want to enjoy what time they do
have left. Their health, their peace of mind, their dignity, their sense
of security, often even their friends, have been taken away. So has much
of their liberty. And, eventually, so will life. Perhaps the greatest
injustice of all, is the loss of the right to life, liberty, and security
of the person, which are supposedly guaranteed in the Canadian Charter of
Rights and Freedoms. And we want to
deny some compensation for this loss?
Leslie Gibbenhuck
The British Columbia
Transplant Society
The BCTS has a webpage on the internet at <http://www.transplant.bc.ca>.
The website has Newsletters, FAQs, a Research Foundation, Living Donors and
links to other transplant sites and medical sites of interest here in BC as
well as the rest of Canada. Although you can not sign up for the registry
on the internet you can do so through the Motor Vehicle Branch or London
Drugs. The BCTS pioneered the development of regional clinics throughout
the province for post-transplant ambulatory care outside the lower
mainland, incorporating local resources in Victoria, Kamloops, Kelowna,
Prince George, Penticton, and Trail. This minimizes the cost and
inconvenience for patients and their families who are not Lower Mainland
residents, but who previously had to spend lengthy periods of time in
Vancouver for post-transplant treatment and care. Additional clinics are
planned for North Vancouver Island
and the Fraser valley.
The BC Transplant Society East Tower, 4th Floor, 555 West 12th Avenue,
Vancouver, B.C. V5Z 3X7
Telephone: (604) 877-2100 Fax: (604) 877-2111 Toll Free: 1-800-663-6189
email: webmaster@BCTS.HNET.BC.CA
Email: hepcbc@sprint.ca
Internet: http://www.geocities.com/HotSprings/5670
HepC BC