| I
ended up seeing a locum for the antibody test, and when it returned
after 2 terrible weeks of uncertainty, it returned positive.
The locum’s 'post test counseling' remains a blur. The
only thing I can remember is a continuing reference to fatal.
I had already been infected five and a half years, so he thought
I was a goner, and soon. Fourteen years later I am still here,
and healthy.
Many others have stories like this, if not
quite the same in detail. For heterosexual men and women there
was, and to a large extent, still remains, an additional burden
of being on the margin of the HIV community. Knowledge of
and access to resources has remained limited, often through
a service being perceived as unfriendly to straights, or never
really having considered heterosexual HIV+ or their children
and families as an issue.
In this kit we have tried to pull together
details of services and issues which those of us who have
been positive a long time would have liked to have seen many
years ago. We have also endeavoured to make it easy to update,
and simpler to post on the internet, both in English, and
other community languages.
In later additions to this kit we plan on
adding some of the experiences others have had in dealing
with their infection and the reactions of others to that infection.
HIV is a part of our lives, but it is not
the only or defining part. We are more, much more than a home
for a nasty little virus, or a research tool. We are individuals,
we are parents, we are partners. We have aspirations and goals,
dreams and dreads. We come from all backgrounds and are not
limited by other people’s stereotyping, ignorance and
bias.
We hope you find this kit useful.
INDEX
SUPPORT SERVICES
Straight
Arrows
Formed in 1995, Straight Arrows is run by and for HIV Positive
heterosexuals and their families. Straight Arrows provides
services and support including:
• Treatment information from a Treatments Officer (in
conjunction with Positive Women) fortnightly
• Medical and paramedical services information
• Legal services referral (HALC)
• Social contact
• Assistance with housing needs, and referral to AHAG
• One-to-one peer support
• Massage
• Hospital/ward visits
• Outreach/home visits
• Monthly lunch (free of charge)
• Speakers for education in wider community
• Drop in space for coffee and/or a chat
• Financial relief and Child Care reimbursements.
Fairfield
House
The Alfred
Moubray Street
Prahran 3181
Hours: Monday – Friday 10am – 4pm
Tel: (03) 9276 3792
Fax: (03) 9276 3817
Anytime Arrowline 24hrs/365days (03) 8302 7222
Email: straightarrows@bigpond.com.au
Web: http://www.straightarrows.org.au
People
Living With HIV/AIDS (PLWHA - Vic.)
PLWHA provides advocacy, representation, information and support
for all HIV/positive people in Victoria. It focuses its attention
and energies on advocacy, particularly in the areas of health
service delivery, treatments activism, housing, anti-discrimination
and quality of life issues for people living with HIV/AIDS.
Membership in PLWHA also entitles a person to a free regular
newsletter, notification of upcoming events (including social
functions) and gives the right to vote at the AGM or any special
meetings of the organisation. PLWHA has a variety of ways
in which HIV+ people can be active, including the Speakers
Bureau, Treatments Action Group, HIV+ Radio or the Board of
Management.
Ground Floor
6 Claremont Street
South Yarra 3141
Tel: (03) 9865 6772
Fax: (03) 9804 7978
Email: plwha@netspace.net.au
Web: http://www.gaynet.com.au/plwha
HIV
Support Services – Victorian AIDS Council
• Services offered include:
• Support for partners, family and friends
• Information and advice in relation to your health
care
• Referral to other agencies
• Social and emotional support and outings
• Financial assistance
• Legal assistance
• Advocacy on behalf of clients
• Personal care in your home
• Assistance with gardening, shopping, washing and other
domestics tasks
• Transport to medical appointments
Check
you eligibility with the Victorian AIDS Council on
(03) 9865 6700 and speak to a Regional Support Officer (RSO).
An initial assessment will be made over the phone. If eligibility
is probable then an appointment will be made for a formal
assessment.
If appropriate a Care Team Coordinator will be assigned who
will then discuss your support needs, and develop a care plan.
All client records are maintained confidentially, and the
program is non-discriminatory. Services are targeted to those
PLWHAs most in need. Straight Arrows has always found the
service to be a boon to HIV+ people, and the RSO's friendly
and approachable.
Positive
Women
This is a State-wide service in Victoria offering confidential
information and support group for women with HIV/AIDS. Positive
Women offer:
• one-to-one contact in person or by phone
• group support
• a monthly newsletter
• a drop-in centre 5 days a week
• information and referrals
• retreats and social events
• hospital and home visits on request.
Positive
Women also:
• advocates and lobbies for the rights of women with
HIV/AIDS
• provides speakers for educational purposes in the
wider community and networks with other women’s and
AIDS groups in Australia and overseas.
Fairfield
House
Alfred Hospital
Moubray Street
Prahran 3181
Tel: (03) 9276 6918
Fax: (03) 9276 6092
Email: info@positivewomen.org.au
Web site: http://www.positivewomen.org.au
AIDS,
Hepatitis and Sexual Health Line
Originally known as AIDSLINE and formed in 1985 in response
to the HIV/AIDS epidemic. The name was changed in 1998 to
reflect the fact that as well as dealing with sexually transmitted
diseases other than HIV, they also offer services on viral
hepatitis, in particular hepatitis C.
AH&SHL offers anonymous, free and extended hours telephone
help. The service is staffed by trained staff and volunteers,
and has been a backbone of HIV information services since
its inception.
AIDSLINE: (03) 9347 6099 or Freecall 1800 133 392
HEP C Helpline: (03) 9349 111 or Freecall 1800 00 241
Vietnamese infoline on Hep C Freecall 1800 456 007
Email: info@aidshep.org.au
Web: http://www.aidshep.org.au
National
Association for Loss and Grief (Vic)
NALAG can assist with information and referral to accredited
Loss & Grief Practitioners (Counselors, Educators, Supervisors,
Care and Support workers), Support Groups and Self Help Groups
and services available. For further information:
National Assoc Loss & Grief (Vic)
PO Box 214 Essendon 3040
Tel: (03) 9351 0358
Fax: (03) 9351 0802
Email: Info@nalagvic.org.au
Web: http://www.nalagvic.org.au
Lifeline
Australia
This is a telephone counseling service that is available 24
hours a day, 365 days a year.
Calls are connected automatically to the nearest available
Lifeline centre for the cost of a local call, from anywhere
in Australia.
Tel: 13 11 14
Web: http://www.lifeline.org.au
Country
AIDS Network (CAN)
CAN is a statewide organisation which represents regional
and rural interests.
Its aim is to be a resource for people affected or infected
by HIV/AIDS or other blood borne diseases, and it can be accessed
by agencies or individuals across Victoria.
CAN also acts as a facilitator for education, training and
events, support and care to be run by local communities for
local communities in rural Victoria.
Tel: (03) 5443 835
Email: ewe2@can.org.au
Web: http://www.can.org.au
back to index
HOUSING
Access to appropriate and safe housing is an extremely important
link in the management of HIV. Housing authorities recognise
this and HIV+ people can apply for priority if they are eligible
for public housing.
Housing options can also include private rental, share accommodation
and community housing.
Additionally, there are full residential services available
for HIV+ men and women, particularly for respite, and temporary
accommodation such as after hospital admission. Straight Arrows,
or any of the other support services can arrange referral
to these.
The principal housing service for HIV+ people is AHAG:
AIDS Housing Action Group Vic. Inc.
365 Hoddle Street, Collingwood, 3066
(Collingwood Community Health Centre, Cnr Sackville &
Hoddle St's)
Tel: (03) 9531 2722
Email: ihspahag@vicnet.net.au
Web: http://home.vicnet.net.au/~ahag/
Public
Transport:
Tram 86, Stop 17 Smith Street
Train – Victoria Park Station
Buses – 246 (Hoddle Street)
200,201,203,205,207,257-262,264-266,276- 281,299,300 (Johnston
Street)
Wheelchair
Access: Yes
Appointments: Yes, there is no drop in facility.
Services
are for those with HIV/AIDS include:
Housing Advice and Referral
Staff are able to discuss housing options, including assistance
for private rental may include information regarding Housing
Establishment Funds (HEF) for rent in advance and the Bond
Loan Scheme (Office of Housing).
Referrals to other housing agencies will also be arranged
where appropriate.
Transitional
Support Program
This program supports those that are homeless or at risk of
becoming homeless. People will need to be assessed by staff
as suitable for the program and be willing to receive support
whilst in the program.
John
R Stroop Housing Program
This community-housing program provides long-term housing
for People Living With HIV/AIDS.
back to index
LEGAL
ISSUES AND DISCRIMINATION
Over
the years, particularly early in the epidemic, people with
HIV have faced some significant hurdles. One of these has
been in relation to discrimination, and other legal areas
where their status has been an issue.
There is Federal and State legislation dealing with equal
opportunity and discrimination generally. PLWHA (Vic), Positive
Women and the Victorian Law Foundation have produced a guide,
“Don’t Just Take It”, which is very helpful.
In Victoria, the Equal Opportunity Act (1995) makes it unlawful
to discriminate directly or indirectly against someone because
of their:
• Age
• Carer status
• Disability
• Lawful sexual activity/orientation
• Personal association with a person who could be discriminated
against
• Physical features
• Political or industrial activity or beliefs
• Pregnancy, parental or marital status
• Race
• Sex
In
particular, this means it is unlawful to discriminate against
a person who is living with HIV, assumed to be living with
HIV, or is an associate of a person living with or assumed
to be living with HIV. (This also applies to Hepatitis C)
It is unlawful to discriminate against a person with HIV in
the areas of :
Accommodation
including buying, renting, providing temporary or permanent
accommodation such as business premises, a house, flat, hotel
or motel room, boarding house or hostel, caravan, mobile home
or campsite.
Clubs
covering social recreational sporting or community service
clubs that are located on Crown Land, or receive any financial
assistance from the State Government or a municipal council.
Employment
and Sport
Goods
& Services & Disposal of Land
which includes refusing to supply a person with goods and
services, or on less favourable terms. It does not matter
if the goods and services are provided for money or not.
Discriminatory
requests for Information
If you feel you have been discriminated against, you can:
Contact an HIV Support Service or HALC
Contact
the Victorian Equal Opportunity Commission
Level 3 380 Lonsdale St Melbourne
Tel: (03) 9281 7100
Fax: (03) 92817171
Web: http://www.eoc.vic.gov.au
HIV/AIDS
Legal Centre (HALC)
What is HALC?
The HIV/AIDS Legal Centre (Victoria) is a community legal
centre, providing legal advice and referral to people infected
by HIV/AIDS.
The aims of HALC include:
• To provide free legal services to people living with
and affected by HIV/AIDS
• To involve people living with and affected by HIV/AIDS
in the recognition, understanding and solution of their own
legal problems.
• To take part in the process of laws related to HIV/AIDS
that are unjust or difficult to understand.
• To raise awareness of the laws and processes that
affect PLWHA through information and education
• To encourage participation in running the Centre by
people living with HIV/AIDS
Who
can use the HALC?
HALC provides free legal advice and assistance to all people
living with HIV/AIDS. It also provides free legal advice and
assistance to partners, carers, family and close friends of
people living with HIV/AIDS, where their legal problems relate
to HIV/AIDS.
What
types of problems does HALC assist with?
HALC can assist with legal problems, including:
• Making a will
• Medical and Enduring Powers of Attorney
• Immigration and travel
• Tenancy disputes
• Social security
• Family law
• Superannuation and insurance
• Discrimination of all types
• Police charges
• Debt
• Employment
When
can I see a lawyer?
HALC is open for appointments every Wednesday night from 7
pm to 9 pm.
You
need an appointment to see a lawyer. Appointments can be made
by contacting the Positive Living Centre on (03) 9863 0444
Is
it confidential?
All staff at the centre are specifically trained so that they
understand the need for confidentiality. Confidentiality is
our PRIORITY.
The centre has special facilities so that your file and all
personal details are secure and can not be assessed by anyone
except HALC staff.
HIV/AIDS
Legal Centre Victoria
6 Claremont Street, South Yarra 3141
Tel: (03) 9525 4455
Fax: (03) 9534 2708
back to index
THINGS
THAT GO BUMP IN THE NIGHT
Everyone
has things sometimes that seem to spin around in their minds
keeping them from sleeping. And, in the middle of the night,
things can also feel overwhelming. Often, in daylight hours,
we can take some positive action to fix these worries, but
we often put them off only to have them return and keep us
awake.
The things can cause us concerns often relate to what may
happen many years from now – things like the need for
a Will, finding out what continuing care is available if needed,
etc.
These sheets will look at some of the things that can be done
making it easier to just get on and live life with fewer sleepless
nights! The funny thing is, everybody should have a grip on
these issues, not just people with HIV. If you deal with them,
whatever your situation, they are done with and you can get
on with life.
Making
a Will
Everybody needs a will! If a person dies without a Will, their
assets are divided up according to a statutory formula. If
you want a choice in what happens to your assets, you need
to make one.
There are many ways to organise this. Most of them simple!
1. Contact your local AIDS Council for free legal assistance
2. Speak with any private lawyer/solicitor who will usually
be able to prepare a Will for less than $100.
3. Attend a local Community Legal Centre who will assist you
for a small fee.
4. The Public Trustee or State Trustee will prepare your Will
for free as long as they are appointed as your Executor. They
deduct fees from estates for carrying out the duties of the
Executor.
POWERS
OF ATTORNEY
What
are they?
There are 3 types of Power of Attorney:
• A general power of attorney
• An enduring power of attorney
• An enduring power of attorney for medical treatment
To
ensure that any Power of Attorney is prepared and witnessed
correctly it is best to follow the guidelines for advice and
preparation given previously under the ‘Wills’
section of this document.
back to index
CHILD
CARE
There
may be times when your circumstances mean that a sudden and
unexpected need for childcare arises. The following are some
guidelines as to who to approach at these times:
Straight Arrows
Straight Arrows has limited financial resources available
for emergency care of children. That is, when circumstances
arise other than regular arrangements. An example of this
would be when you are required to attend a medical appointment
at short notice, or if requiring admission, again at short
notice, whilst you make firmer arrangements.
Straight Arrows also endeavours to assist with childcare when
running an adult function.
Phone: (03) 9276 3792 or Anytime Arrowline: (03) 8302 7222
Victorian
AIDS Council
The Council has a Child Care policy that states its commitment
to:
• Facilitating the access of parents and guardians to
the processes and services of VAC, and also to
• Providing parents and guardians who have HIV/AIDS,
or whose children have HIV/AIDS with access to occasional
respite child care.
Requests
for childcare will be assessed on a case-by-case basis with
reference to the level of demands on the service.
Phone: (03) 9865 6700
Hospital
The Social Work department of your treating hospital may be
able to help with arrangements through local councils, etc,
and at times infants have been accommodated in the hospital
with a parent. You might want to make enquiries at the hospital
to plan for such a contingency.
Remember, you can contact Straight Arrows at almost anytime
to discuss possibilities.
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FINANCE
Good
financial planning, and knowledge of the resources available,
can provide a sense of security for anyone, and particularly
people with HIV. The planning needs of HIV+ people depend
on their personal circumstances, their current resources,
and future needs. A person working full time, for example,
has different resources and planning needs to a person who
is unwell and unemployed. People can also have circumstances
which can include periods of employment mixed with periods
of inactivity:
Long Term
For people who are well and/or working, particularly those
with children, there is the issue of medium to long term savings
and planning.
Cash
Usually cash, such as a bank account, is considered to be
a very short term investment. The interest rates paid on savings
accounts and the like is extremely low, and term deposits,
whilst having a better rate, lock money up for a fixed period.
On the other hand, cash in accounts is readily available.
There
is an alternative to these, however – Cash Management
Trusts. These are usually run by large investment
companies, and offer a reasonable rate together with good
access to funds, including cheque access. The catchs with
CMTs are they often require a minimum deposit, or a minimum
balance. If you have some savings they are a good place to
park money with a 12 month to 2 year horizon.
Shares
and the stock market
The roller coaster ride. The stock market can offer good returns
in the medium to long term if you pick a good company or portfolio
of companies. The market has two factors affecting your investments
– risk and volatility. Risk is the possibility of your
investment going belly up, like some of the new technology
companies. Volatility, on the other hand, relates to the rise
and fall of the market, and, providing there is a general
upward movement in your investment, not such an issue for
medium to long term investors.
One way of investing in shares, or property for that matter,
is to spread your investments not just by number, but also
within individual investments through managed unit trusts.
There is a multitude of these unit trusts, offering a diverse
range of investment options, such as Australian and International
Equities, and with a variety of outlooks, including bias towards
income or capital growth, lower or higher risk and volatility,
etc. The investment company employs professionals to manage
these investments, and their performance history can be assessed
from a prospectus.
The best way of accessing these products is to find an experienced
and reputable investment advisor. In particular look for an
independent advisor, and one who discloses the initial and
trailing commissions they receive, or an advisor who charges
a consultation fee only. The Victorian AIDS Council has produced
an excellent guide on managing finances, “the Positive
way to stay afloat”. You can obtain a copy from Straight
Arrows or directly from the VAC
Centrelink
At various times, many of us need to access the social security
system.
For advice as to Benefits to which you or members of your
family are entitled it is best to directly contact Centrelink.
Centrelink staff also visit the Alfred Hospital twice a week
providing a very discrete link to the social security system.
The following are central numbers – Australia-wide –
for the designated Benefits:
131021
To make an appointment to see someone in your local office
132717
Disability, Sickness and Carers benefits
136150
Family/Parenting Payments
131202
For information in other languages
132850
Employment Services
132490
Youth Allowance
132490
Austudy Payment
Freecall
1800 810 586
Teletypewriter
Service
A TTY service for hearing and speech impaired people. A TTY
phone is required to use this service.
Depending
on your situation the following Benefits may well apply at
various times:
• Disability Support Pension
• Mobility Allowance – not means tested
• Child Care benefit
• Parenting Payment
• Carer Allowance
• Sickness Allowance
• Telephone Allowance
David
Williams Fund - Project of the HIV Services Unit
of Victorian AIDS Council
This fund was established in 1987 by the friends and family
of David Williams, and provides emergency financial assistance
and relief to HIV+ people experiencing hardship.
To be eligible for financial assistance through the David
Williams Fund you must:
• Provide proof of your HIV status
• Demonstrate that you are in receipt of a Social Security
Benefit or Pension
• Demonstrate financial hardship, and
• Be a resident of Victoria for the previous 3 months.
David
Williams Fund Application forms are available from:
•The Victorian AIDS Council, 6 Claremont Street, South
Yarra
• The Social Work Department of the Alfred Hospital,
Prahran
• Straight Arrows
Straight
Arrows
Straight Arrows provides a limited amount of emergency financial
relief to people within our service category: HIV+ parents
and HIV+ heterosexuals and their families. This is usually
by way of voucher or utility assistance.
back to index
LIVING
WITH CHANGE AND TRANSITION (and dealing with Loss and Grief)
Every
person’s life contains change and transition. From our
earliest months we experience (whether we are conscious of
it or not) massive changes - physically, emotionally and mentally.
Sometimes there is resistance to change and it is often expressed
through crying. Any who have witnessed a small child being
put to bed against their will understands this very well!
As we grow older we often feel the same emotions when faced
with changes and transitions, but we have learned what is
‘appropriate’ or ‘inappropriate’ behaviour
in our society at such times. However, we do still respond,
despite what our public face shows.
Very often we don’t recognise the changes as being a
cause of grief in our lives. We perhaps, although incorrectly,
think that humans only grieve when a death occurs. Of course
it is true that we do grieve when bereaved. However, there
are many other changes and transitions that can arouse similar
emotional and other responses.
Some
common changes and transitions are:
• Finishing school
• Leaving home
• Breakdown in a relationship
• Lost dreams/hopes
• Divorce
• Loss of friendship
• Unemployment
• Ill health
• Infertility
• Loss of accommodation
• Loss of financial security
• Changes in role and sense of identity
One
of the realities of life is that we are all individuals with
our own unique way of feeling and expressing ourselves. While
responding to change and transition is a universal experience
the way in which we respond is almost inevitably different
to anyone else. Even when a similar change is experienced
the responses may differ enormously.
So
what are the various factors that help to create these different
responses within us?
• Our age and previous experience in dealing with change
and transition
• Our gender - with all the social pressures to conform
to ‘male’ or ‘female’ ways of showing
emotion.
• Our cultural background
• Our ethnicity
• Our belief system (religious and spiritual values)
• Our sense of personal identity
• Our current health situation
• Our current financial situation
• Our support systems
• Access to information that can assist us
• Our relationship with the person or thing that has
been lost to us
So
how do we express our response to change and transition?
It is helpful to recognise the impact on our lives in all
aspects of our experience, ie in the physical, emotional,
sexual, economic, social, psychological and spiritual spheres.
And so we may respond with tears, or we may not. We may experience
physical aches and pains, headaches, digestive problems. We
may withdraw socially or become hyperactive in our activities.
We may feel abandoned by God, or may seek out spiritual support.
We may seek casual and anonymous sexual encounters or we may
long for a committed relationship. We may experience poverty
for the first time and be ashamed or embarrassed to admit
our needs.
Some
strategies for coping with change and transition.
• Do not carry the burden alone. Find a trustworthy
person with whom you can share your feelings.
• Seek out information to assist you with your specific
needs. For example, financial counseling, spiritual guidance,
medical attention. Whatever it is that will offer ease to
anxiety and uncertainty.
• Recognise that whatever you are feeling is normal,
that responding in these ways does not mean you are ‘going
mad’ (which is how many people describe themselves as
feeling when under stress). Your responses show you are in
touch with the reality of the pain of the change.
• Utilise the phone book, the Internet and other resources
to put you in touch with organisations, counselors, or other
forms of support in the community. They are there to be utilised
and their very existence is evidence that you are not the
first to feel in need of their expertise.
Those
around us grieve too.
When we are experiencing change and transition that brings
with it loss and grief, then it is sometimes easy to forget
that those who know us can also be feeling the impact of the
changes we are experiencing. None of us lives without others
in our lives. We may (or may not) have families; many have
neighbours, friends, social groups, colleagues at work (ie
in paid or voluntary work places), professionals who offer
support and care. Any person with whom we share some sort
of relationship will affect us by their attitudes and feelings
just as we affect them with ours.
Experiencing grief can create feelings of isolation because
we look around and see others who are behaving, acting, speaking
differently to us even if they share a similar situation.
But no two people are the same, and no two people’s
circumstances are exactly the same.
It can be tempting to judge ourselves against others and think
that we are not coping if, for instance, we shed tears and
others do not. ‘Coping’ can mean that we feel
angry, or cry, or feel sad, or happy. Coping is acting on
our feelings. We are not coping when we hide our feelings
– especially when we try to hide them from ourselves!
If you feel that you would like to access support as you work
with the feelings arising from any changes and transitions
in your life then contact a Social Worker/Counselor at your
local HIV/AIDS service, your General Practitioner or a grief
counselor.
Accredited grief counselors can be contacted through the National
Association for Loss & Grief (Vic.) on (03)9351 0358 or
Country Vic. Freecall 1800 100 023.
back to index
DEPRESSION
Depression
can be a common reaction to a stressful event in life, especially
loss. It may also be a symptom of a chronic medical illness,
or a reaction to medication. It is not uncommon for people
with HIV to experience depression.
The
most important aspect of depression is that it can be effectively
treated.
Signs
of Depression:
There are many signs associated with depression, though experiencing
each of these things separately does not indicate that you
have depression:
• A feeling of sadness lasting for an extended period
of time
• Loss of appetite, significant weight gain or loss
• Irregular sleeping patterns and difficulty getting
out of bed
• Anxiety, irritability, impulsive behaviour
• Feelings of worthlessness, helplessness or that there
is no future
• Finding you do not enjoy previously pleasurable activities
• Suicidal thoughts
• Frequent crying, or inability to cry
• Difficulty concentrating and loss of interest
• Loss of sexual desire or sexual difficulties
Factors
which can aggravate depression:
If you are feeling depressed, you need to be aware of things
that can increase feelings of depression. Some of these are:
• Drug use
• Alcohol use
• Certain HIV medications
• Extra stress
• Social isolation
• Dwelling on the current feelings of unhappiness
Practical
ways that may ease depression:
• Seek supportive company
• Try to achieve a small task each day
• Take things one day at a time
• Do something special for yourself
• Mild exercise. Eat and sleep sensibly.
• Talk to a health professional
Seeking
Help:
An accurate diagnosis is important to assist in treating and
monitoring your depression. There are a number of services
available to do this. Many that specialise in HIV and depression
will be free of charge.
Your
options include:
• Seeing a GP, counselor or a social worker who will
refer you to the appropriate services if extra treatment for
your depression is needed
• Seeing a psychologist or a psychiatrist is an option
many people choose (a referral is usually required to a psychiatrist)
• There are other services that deal with these issues
indirectly, by providing ongoing support, such as peer support
groups
• There is more than one option available for you.
HELPFUL
RESOURCES:
The Alfred HIV Psychiatry
(03) 9276 6081
The Alfred HIV Social Work Team
(03) 9276 3026
Bouverie HIV Counseling Team
(03) 9376 9844
Melbourne Sexual Health Centre Counselor
(03) 9347 0244
Victorian AIDS Council Counseling Team
(03) 9865 6700
(provides services for a minimal cost)
The Victoria Infectious Disease Service
(Royal Melbourne Hospital) Social Worker
(03) 9342 7418
Internet
site:
Beyond Blue http://www.beyondblue.org.au
back to index
PEOPLE
LIVING WITH HIV AND AIDS (PLWHA)
NAPWA
(National Assoc of PLWHA)
Darlinghurst 1300
Tel: (02) 9281 2511
Fax: (02) 9212 5322
ACT
Tel: (02) 6257 4985
Fax: (02) 6257 4838
N.S.W.
Tel: (02) 9361 6011
Fax: (02) 9360 3504
Northern
Territory
Tel/Fax: (08) 8948 0810
Queensland
(Qld Positive People)
Tel: (07) 3844 1990
Fax: (07) 3846 1283
South
Australia
Tel: (08) 8293 3700
Fax: (08) 8293 3900
Tasmania
(Positive People TAS)
Tel: (03) 6234 1242
Fax: (03) 6234 1630
Victoria
PLWHA
Tel: (03) 9865 6722
(03) 9804 7978
Positive
Women
Prahran
Tel: (03) 9276 6918
Fax: (03) 9276 6092
Straight
Arrows Inc.
Tel: 03 9276 3792
Fax: 03 9276 3817
AIDSLINE
Melbourne: (03) 9347 6099
Country Vic: 1800 133 392
TTY: 1800 032 665
back to index
AIDS
COUNCILS AND ORGANISATIONS
Aust.
Federation of AIDS Orgs.
Level 4, 74 Wentworth Ave
Surry Hills 2010
Tel: (02) 9281 1999
Fax: (02) 9281 1044
AIDS
Action Council of the ACT
Canberra
Tel: (02) 6257 2855
Fax: (02) 9281 1044
AIDS
Council of Central Australia
119 Todd St.
Alice Springs 0871
Tel: (08) 8953 1118
AIDS
Council of NSW
9 Commonwealth St
Darlinghurst 2010
Tel: (02) 9206 2000
Fax: (02) 9206 2069
AIDS
Council of SA
64 Fullarton Road
Norwood 5067
Tel: (08) 8362 1611
Fax: (08) 8363 1046
N.T.
AIDS Council
6 Manton St
Darwin 0800
Tel: (08) 8941 1711
Fax: (08) 8941 2590
Qld.
AIDS Council
32 Peel St
Sth. Brisbane 4101
Tel: (07) 3844 1990
Fax: (07) 3844 4206
Tas.
Council on AIDS & Related Diseases
319 Liverpool St
Hobart 7001
Tel: (03) 6234 1242
Fax: (03) 6234 1630
Victorian
AIDS Council
6 Claremont St
South Yarra 3141
Tel: (03) 9865 6700
Fax: (03) 9826 2700
W.A.
AIDS Council
664 Murray St
West Perth 6005
Tel: (08) 9429 9900
Fax: (08) 9429 9901
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TREATMENT
FOR HIV
Drug
treatments for HIV offer some people the chance to control
the virus and stay healthy for much longer. Treatment options
have had a huge impact on the lives of people with HIV and
those who care for then, due to reductions in AIDS illnesses,
admissions to hospital and death rates. Treatment has also
enabled some people with HIV to go back to work and plan for
the future, Unfortunately, the drugs do not work as well for
everyone, and they also have quite a lot of side effects.
Deciding whether or not to take treatment is an individual
decision which you should consider carefully and discuss all
of the options with your doctor.
Types
of Treatment
Drug treatment is usually called “HAART” which
stands for “Highly Active Anti Retroviral Therapy”.
HIV is a type of virus called retrovirus, so antiretroviral
drugs are drugs which work against retroviruses.
There are three main groups of drugs:
• Nucleoside reverse transcriptase inhibitors (NRTIs)
• Non-nucleoside reverse transcriptase inhibitors (NNRTIs)
• Protease inhibitors
Usually,
three different drugs from at least two of these group are
taken together, two or four times a day.
How
treatment works
The drugs control the virus by stopping it from making copies
of itself inside the cells of the body. The virus gets into
a body cell and starts to make more copies of itself, which
then spread out of that cell and into another. Drug treatments
interfere with the chemicals that the virus uses to make these
copies. One of these chemicals is called ‘reverse transcriptase’,
and the other is called ‘protease’. So reverse
transcriptase inhibitors stop reverse transcriptase from working,
and protease inhibitors stop protease from working.
The virus can become resistant to the drugs, which means that
they won’t work as well. The treatment may then have
to be changed to a different combination of drugs.
People taking drug treatment for HIV will probably need to
take it for the rest of their lives. Stopping drug treatment
even for short periods of time can cause the virus to become
resistant to those drugs. A lot of research is being done
in this area, to see if people with HIV will be able to take
short breaks from treatment without harmful effects. This
may be a possibility for the future, but at the moment, it
is not recommended that anyone interrupt drug treatment without
medical advice.
The drugs cannot eliminate all of the virus in the body, but
they can control it. People on treatment will still have HIV
in their body, even when blood tests show the virus is “undetectable”.
Although an “undetectable” result is good news,
it means that as far as that test can tell, it can’t
find virus in the blood. A more sensitive test could possibly
still find some virus, and also the virus may still be found
in the semen or in the lymph glands.
Treatment does not stop someone with HIV from being able to
pass on the virus through unprotected sex or sharing needles.
Side
Effects
Some of the most common side effects are:
• Nausea (feeling sick)
• Diarrhoea
• Tiredness
• Difficulty sleeping
• Headaches
• Peripheral neuropathy (problems with the nerves in
the legs, such as pain)
• Lipodystrophy (changes in the way body fat is distributed
around the body)
Side
effects are a big problem with treatment, although it would
be unusual for someone to get all of them at the same time.
Sometimes the side effect can be controlled with other medication,
or is not too severe and can be tolerated. Sometimes treatment
regimes need to be altered because of side effects. There
is some good advice about side effects available on the Internet
from Project Inform, access through www.thebody.com
You could also talk to your doctor, the Straight Arrows Treatment
Officer, Jenny McDonald, or a Treatment Officer at your State
HIV/AIDS office.
Testing
The two blood tests which are used to see how well the treatment
is working are the viral load test and the CD4 count.
The viral load test measures how much virus can be found in
the blood. Usually, people who are just starting treatment
will have high levels of the virus. One of the aims of the
treatment is to reduce this level until it is ‘undetectable’,
which means the test cannot fin any virus. It doesn’t
actually mean that all of the virus is gone, but it does mean
that it is under control.
The CD4 count measures how many of a certain type of white
blood cell can be found in the blood. This is also sometimes
called the ‘t-cell count’. The CD4 count is one
way of seeing how well the immune system is working. The higher
the CD4 count, the healthier the immune system is. This means
that the risk of other infections, such as pneumonia, is much
less. One of the aims of treatment is to see the CD4 count
go up, showing that the immune system is getting stronger.
Some people with HIV use other types of therapy, either alone
or with their treatments. (see Complementary Therapies information
sheet)
For
More Advice:
• A doctor who specialises in HIV
• Access Information Centre – Tel. (03) 9276 6993
• Melbourne Sexual Health Centre – Tel. (03) 9347
0244
• Straight Arrows – Tel. (03) 9276 3792
• Victorian AIDS Council – Treatment Officer –
(03) 9865 6700
• Victorian HIV/AIDS Service, The Alfred, Infectious
Diseases Outpatient Clinic – Tel: (03) 9276 6081
• Victorian Infectious Diseases Service, Royal Melbourne
Hospital Tel: (03) 9342 7212
back to index
CONSIDERING
TREATMENTS – TREATMENT OFFICERS
Over
the past decade or so there have been many changes in the
way HIV is understood and managed. These changes have led
to great improvements in treatments and management and have
greatly increased the options available to people today with
HIV.
As a consequence of these developments many people are living
longer and staying well with HIV.
The changes which have led to these improvements include:
• A clearer understanding of how HIV works inside the
body
• A range of antiretroviral drugs which can act in different
ways against the virus and are used in combination to treat
HIV
• The use of the viral load test measuring the amount
of HIV circulating in your blood has become standard practice
in Australia. The results of this test can help in making
treatment decisions. It can also show how well the treatments
are working against HIV.
Your
principal source of information on treatments will be your
specialist. People often find, however, that they want to
discuss at length the various issues surrounding treatments,
including how there lifestyle may impact on the sometimes
very strict compliance required by the drugs. People are also
often interested in how to deal with side effects, and other
issues such as diet.
Treatment
Information Officers available in the Straight Arrows/Positive
Women Positive Edge Project, other HIV related organisations
throughout Australia are able to discuss such issues as:
• When to start treatments
• What combinations are best for you
• Viral load
• Antiretroviral treatments
• Resistance
• Tips to help stop the development of resistance
• Compliance
• Monitoring and changing combinations
• Treatment breaks
• Tips to help manage side effects
• Nutrition
• Complementary therapies
• New developments
• Other resources and support services available
Some
contacts:
Positive Edge
A Straight Arrows and Positive Women (Vic) Project
Tel: (03) 9276 3792
Mob. 0401 922 419
Fax: (03) 9276 3817
Jim
Arachne
Victorian AIDS Council
Tel: (03) 9865 6700
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COMPLEMENTARY
THERAPIES
What does the term ‘Complementary Therapies’ mean?
(def.) complementary …. “that which completes”
Complementary therapies are those that can be used to supplement
or replace traditional medical treatments.
Complementary therapists are specifically trained practitioners
who can assist you in assessing which of a wide range of therapies
can be of benefit to you.
What
are the most commonly used of the wide range of complementary
therapies?
National surveys in recent years have highlighted the following
as the most frequently utilised:
• Nutritional supplements, i.e. vitamins and minerals
• Massage
• Herbal therapies
• Meditation
• Acupuncture
Detailed
information can be accessed via the internet.
COMP_THERAPIES_HIV,
a free, monthly e-mail newsletter focusing on research into
complementary therapies that are relevant to people with HIV/AIDS.
To register for automatic delivery send a blank email to:
Comp_therapies_hiv-subscribe@yahoogroups.com
Or phone your email address to Jim Arachne - Complementary
Therapies treatment Officer at Victorian AIDS Council on (03)
9865 6700.
The newsletter is produced at the Victorian AIDS Council.
WITH
COMPLEMENTS. This magazine has been the only one
in the world with a sole focus on complementary therapies
and HIV. It was produced by the HIV Complementary Therapies
Collective based in Sydney. Unfortunately, it ceased production
in 2000.
DAAIR
- Direct Access Alternative Information Resources.
Based in New York, this site has large amounts of information
on complementary therapies and HIV - with a main focus on
nutritional supplements. DAAIR’s (expensive) protocols
for dealing with drugs side effects are included.
Search this site at: http://www.daair.org
Organisations
Check if your local state or territory AIDS council or PLWHA
organisation has a designated person to help you with treatment
queries.
Victorian AIDS Council - Jim Arachne - Tues - Fri - (03) 9865
6700
PLWHA N.S.W. - Mac McMahon - Mon and Friday, 2-6 pm - (02)
9519 6830
Books
Many books are available, however these two are highly recommended
for a start:
Living With HIV/AIDS - A Practical Guide for Staying Well
- Peter de Ruyter - 1996 Allen & Unwin
Peter de Ruyter has been Australia’s leading naturopath
in the treatment of people with HIV since the early 1980s.
Healing
HIV - How to rebuild your immune system - Dr Jon Kaiser -
1999 - Health First Press
Dr Kaiser is an American medical doctor with a large HIV practice
who combines medical drugs with complementary therapy protocols.
back to index
HIV
& Hep C Coinfection - A Guide
The
liver, hepatitis and viruses:
Hepatitis means inflammation of the liver, a condition where
the liver gets hot, swollen, red and painful. Many different
things (alcohol, drugs, viruses, bacteria, poisons) can cause
inflammation of the liver.
The
liver is part of the digestive system. An adult’s liver
is about the size of a football and is located behind and
slightly below the right side of the rib cage. Millions of
liver cells do the essential work of filtering poisons (including
drugs and alcohol) from the bloodstream and changing the foods
we eat and drink into chemicals that the body can use for
energy, maintenance and growth.
A
virus is a microscopic parasite. 5 different viruses can invade
and reproduce inside the liver, causing hepatitis. The different
viruses that inflame the liver are called Hepatitis A, Hepatitis
B, Hepatitis C, Hepatitis D, Hepatitis E and Hepatitis G.
All 5 hepatitis viruses infect the liver, but all are completely
different from each other in terms of how each virus is spread
and the long-term effects for the person who is infected.
Hepatitis
C is one virus that reproduces itself inside the liver cells
of infected people. If the virus infection is long term the
ongoing inflammation of liver cells can cause permanent damage
to the liver.
In
the liver of the person who has Hepatitis C, the virus is
multiplying and damaging the cells, meanwhile the body is
constantly repairing itself with new cells. Chronic Hepatitis
C is like a marathon race between the Hepatitis C virus and
the liver, with the immune system always trying to stop the
virus.
You
can assist your liver to win this race by treating your body
well with good low fat diet, lots of fruit and veggies, little
or no alcohol and a balanced combination of exercise, rest
and relaxation. Getting vaccinated against Hepatitis A and
B will also be useful (because it protects your liver from
other invaders).
There
is also the option of Interferon based treatment which aims
to clear Hepatitis C out of the body altogether. (See information
on treatments).
None
of these are measures guaranteed to stop the progress of Hepatitis
C liver damage, but for co-infected people all are worth a
try.
What
does Hepatitis C do to people who are co-infected with HIV?
If Hepatitis C reproduction continues unhindered, causing
continual liver inflammation the outcomes are serious. Fibrosis
is the scar tissue that forms in the liver after it has been
inflamed for a while. Cirrhosis occurs when the liver has
been inflamed and has been forming scar fibrosis for a long
time. At this stage the liver cannot filter the blood due
to loss of liver cells and scarring that blocks the flow of
blood between the cells.
Cancer is the end product of years of inflammation, fibrosis
and cirrhosis. Surgery to remove tumours does not extend life
for long.
What
happens if a HIV positive person also has Hepatitis C?
HIV causes immune suppression, this allows Hepatitis C to
reproduce rapidly, increasing the rate of damage to the liver.
Destruction of liver cells is indicated by abnormally high
levels of ALT (Amino Alaninetransferase ) in the blood (revealed
on Liver Function Tests). Some destruction (and replacement
) of liver cells is normal, but raised ALT levels indicate
that more than the usual numbers of cells are being destroyed.
The destruction of liver cells may (or may not) be caused
by Hepatitis C; Other things like drinking too much alcohol
can also destroy liver cells (and even too much coffee or
stress can cause raised ALT levels, so can strong medicines
such as anti-retroviral medicine for HIV).
But
even if ALT levels seem to be continuously high, this does
not measure the level of permanent damage that has been done
by inflammation. It also important to know that once the liver
is severely scarred (cirrhosis) ALT levels can read “normal”
even though the liver is quite damaged. People can feel very
sick or fatigued with Hepatitis C but their ALT levels read
“normal”; this is quite common and reflects on
the shortcomings of ALT readings as a precise diagnostic tool.
Some
broken liver cells would have been replaced by perfect new
liver cells, others replaced by scar tissue which eventually
accumulates causing blockages between liver cells and the
bloodstream. Only a liver biopsy (where a tiny piece of liver
is pinched off by a needle) viewed under a microscope can
show exactly how much damage (fibrosis) has accumulated. Liver
biopsy results are graded on a scale of 0-4. 0= no damage
1=mild fibrosis (scarring) 2=medium fibrosis 3=bridging fibrosis
4=cirrhosis fibrosis. Cirrhosis is a serious illness. At that
stage the liver is struggling to perform any of its vital
functions.
One
of the liver’s functions is to process medicines. People
who are HIV positive may require combinations of Antiretroviral
drugs to keep the HIV load down allowing their CD4 count to
stay high. All medicines are processed by the liver in order
to have the required effect in the body. Some antiretroviral
drugs are especially difficult for the liver to process. If
the liver is damaged its capacity to process drugs is also
damaged. A scarred liver is severely impaired and that liver
may not process medicine properly (thus preventing the body
from getting the full benefit of the drug). The liver may
even be poisoned by a medicine that would not be poisonous
to a healthy liver.
Why
look after my liver when I have HIV anyway?
People who are co-infected with Hepatitis C and HIV need to
keep their liver intact so that their liver will be able to
process any Antiretroviral drugs that can fight HIV to keep
the immune system intact. Where possible, co-infected people
may wish to take the chance (through Interferon based Treatments)
to eradicate Hepatitis C from their system. There is no way
to cure HIV, but there is a chance of getting rid of Hepatitis
C.
What
are the odds of clearing Hepatitis C on Ribavirin and Pegylated
Interferon?
The success rate of this treatment varies from 28% - 69 %
and depends upon:
• which genotype of Hepatitis C the person has (detected
by PCR blood test)
...• Genotype 1 around 28% clearance after 12 months
on treatment
...• Genotype 2 or 3 around 69% clearance after 6 months.
• length of treatment for 6 or for 12 months
• amount of virus in blood before treatment (measured
by PCR -low viral load is better)
• age of person (under 40 years old better outcomes)
• gender: male or female (females better outcomes)
55%
of people in Australia with Hepatitis C have genotype 1.
Hepatitis
C Helpline recommends that you consult with a doctor who is
expert in co-infection and ask if there is any good reason
why you should not be prescribed combination Pegylated Interferon
with Ribavirin. If there is good reason (perhaps a heart condition
or potential for bad interaction with your HIV drugs) then
ask for the next most effective treatment.
Pegylated
Interferon & Ribivarin
This medicinal drug treatment involves shallow injections
(Interferon) once a week, as well as tablets (Ribivarin) for
period of six months or a year. The success of any treatment
is usually measured by the evidence of no Hepatitis C virus
detectable in blood at the end of treatment and then 6 months
later.
Interferon
based treatments are often associated with serious side effects;
up to 15% of people who commence these treatments stop taking
them because of side effects. Some people experience few or
no side effects. Because of the potential for severe depression,
anxiety and mood swings, good clinics are ensuring that clients
are not depressed before commencing treatment and monitoring
patients carefully throughout the treatment.
It
is highly recommended that people undergoing Interferon treatments
have supports in place such as close and expert monitoring
of depression, anxiety and irritability; access to good counseling
and support groups for the person undergoing the treatment
and also those who live with them.
Side
effects of Interferon based treatment may include:
• “flu like” symptoms (fevers/chills,muscle
aches, joint aches, fatigue)
• headaches
• nausea and/or vomiting,
• insomnia
• hair loss
• depression, anxiety, mood swings
• thyroid disorders
• blood disorders including serious anaemia
• heart complications related to serious anaemia
NB:-It is strongly recommended that clients (male and female)
do not attempt pregnancy while on Rebetron or for 6 months
afterwards because birth defects are likely to occur.
Interferon
is a neurotoxic drug ; that means it is irritating of the
brain. Depression, anxiety and irritability can be very serious
side effects. Remember if you are freaking out on Interferon
it is not you it is the drug- call the clinic or your counselor
and get help immediately. If you are watching your partner
freak out on interferon- get help. Side effects can be managed,
but don’t try to do it alone.
Before
commencing Interferon based treatments ensure that the Liver
Clinic send you to a psychiatrist for expert assessment and/or
treatment of depression. Even if you are assessed as “not
depressed” before commencing Interferon based treatments,
it important to be aware of the signs of depression in case
it overtakes you during the treatment.
If
you are overwhelmed by such feelings, seek help immediately.
It is important to remember that Interferon induced depression
does not mean that you are losing your mind; it is a side
effect of Interferon and therefore can be quickly relieved
with professional assistance.
Hepatitis
C Transmission
Hepatitis C is transmitted only when the blood of a person
with Hepatitis C gets out of their bloodstream and into the
bloodstream of another person. Even tiny specks of blood can
carry Hepatitis C into the bloodstream when there is an open
break in the skin.
It
is perfectly safe to live with a person who has hepatitis
C. Hepatitis C is not transmitted by sharing cups, glasses,
food, drinks, eating utensils, bathrooms, soap or towels with
people. Hepatitis C is not transmitted through hugging, kissing
or touching people. Hepatitis C is not transmitted through
the semen, vaginal fluids, saliva, tears or sweat of people
who have the virus. Hepatitis C is transmitted only when the
blood of a person with Hepatitis C gets out and into the bloodstream
of another person, this requires that both people must have
open wounds, because hepatitis C must enter the second person
through an open break in the skin.
Hepatitis
C can be passed from person to person in any of the following
activities.
-Injecting with un-sterile injecting equipment for example
by sharing drug injecting equipment or through an accidental
needle-stick injury where the needle has just been used.
-Un-sterile tattooing, body piercing, acupuncture needles
-Receiving unscreened blood transfusion (in Australia before
1990)
-Use of un-sterile medical, surgical or dental instruments
where blood is exposed.
-Ritual blood exchange, for example “blood brothers”
-Sharing razors, tooth-brushes or manicure equipment with
a person who has hepatitis c
-Hepatitis C positive mother delivering baby but ONLY if mother’s
blood gets under baby’s skin.
If
you are co-infection with HIV and Hepatitis C, the risk of
transmitting Hepatitis C greater because co-infection increases
the HCV viral load in your blood.
What
does this mean for sex…
-Co-infected people may pass on Hepatitis C through unprotected
sexual penetration if blood gets out and into the bloodstream
during sexual penetration. However HIV is the greater concern
for sexual penetration. Correct condom use can prevent the
spread of HIV.
If a person has both HIV and Hepatitis C, only safe sex barriers
such as condoms can protect sex partners from transmission.
What
does it mean for childbirth…
•A mother who is co-infected with Hepatitis C and HIV
is more likely to pass HCV onto their babies during birth.
While there are now are very effective drugs to prevent maternal
transmission of HIV, only avoidance of breaking baby’s
skin can prevent Hepatitis C transmission.
What
if my baby does get Hepatitis C?
So far the evidence suggests that babies and young children
who get hepatitis C usually do not get sick from it during
childhood. Generally children with hepatitis c grow quite
normally. Children with hepatitis c should get regular medical
check-ups by expert paediatric liver doctors (most Children’s
Hospitals have clinics) to make sure that the child’s
liver is coping well with hepatitis c infection. There are
medicines available to treat Hepatitis C but these medicines
have serious side effects and are not available for children
(because children are usually not sick from Hepatitis C).
Prevention
–how to stop the spread of Hepatitis C.
Because Hepatitis C is only a blood-borne virus, people with
Hepatitis C pose no threat to anyone in the home or workplace
as long as everyone is “blood aware”. Blood awareness
means always treating everyone’s blood as potentially
able to cause infection:
• Cover up any open cuts and sores with band-aids.
• Do not share razors, nail files or toothbrushes with
other people.
• Always wear disposable rubber gloves when giving first
aid or cleaning up blood spills.
• When injecting drugs, do not share needles, syringes,
swabs, tourniquets, filters, water or spoons
• When injecting, clean the table and wash your hands
before and after each hit
• When you get a piercing, tattoo, acupuncture or dentistry;
make sure the job is done by a professional who uses new needles,
properly sterilised equipment, gloves, and (for tattoos) individual
ink pots.
• Dispose of bloody needles or sharp instruments in
a strong plastic sealed container such as a plastic drink
bottle with a lid (or the yellow Sharps Disposal containers
that are available free at the local Needle & Syringe
Service)
• Dispose of soft blood stained material a leak-proof
plastic bag
• Clean up blood spills with paper towel; then wash
area with warm, soapy water and finally, wipe area with bleach.
• Do not share a bloody thing!
Testing
for Hepatitis C- Who should get tested for Hepatitis C?
If you have :
• injected IV drugs
• received un-screened blood-transfusion ( Australian
Blood Banks started screening for Hepatitis C in 1990, but
in many other countries screening still does not occur)
• had un-sterile tattoo, body piercing or acupuncture
• had surgical or dental operations in un-sterile conditions
• shared razors, toothbrushes, manicure equipment with
someone who has Hepatitis C
If
you think you have been exposed to Hepatitis C you can have
blood tests to find out for sure.
You must specifically ask for Hepatitis C blood tests. If
you have HIV, it is possible that Hepatitis antibody may not
show up in a blood test that looks for Hep C anti-bodies.
Health care workers must use the PCR blood test for Hepatitis
in order to get an accurate result.
If
I have Hepatitis C can I drink alcohol?
Alcohol is toxic to liver cells and causes inflammation. If
alcohol induced inflammation is continual, the ongoing damage
will eventually lead to scarring of the liver.
In the liver of the Hepatitis C Positive person, the virus
is slowly multiplying; this causes inflammation and eventually
may do enough consistent damage to cause scarring. Partly
Because Hepatitis C is slow and the liver repair is very fast,
only a minority of people with chronic Hepatitis C will accumulate
enough Hepatitis C related liver damage to cause life threatening
illness.
Alcohol consumption damages liver cells; Hepatitis C replication
damages liver cells; The combination of alcohol consumption
and Hepatitis C means more liver cells are damaged (than by
alcohol alone or by Hepatitis C alone) so this increases both
the likelihood of and rate of serious liver damage (scarring,
fibrosis and cirrhosis).
Some people need help with strategies for cutting down on
alcohol or giving it up, Drug & Alcohol Helplines can
refer to professionals who can help people to control their
alcohol consumption.
Symptoms
of Hepatitis C.
Some people with chronic Hepatitis C experience some or all
of the following:
• 'flu like' symptoms (fevers/chills, muscle-aches,
joint aches, fatigue)
• indigestion -difficulty digesting food especially
fatty/fried food
• poor appetite, nausea or vomiting.
• pain under ribs on right side of abdomen
• 'foggy brain' and poor concentration and/or headaches
• psoriasis (patches of red, scaly flakey skin rash)
and / or itchiness
• irritable bowel syndrome and / or diahorrea
• hormonal imbalances including disruption of thyroid
functioning and/or menstrual cycle
• severe hang-over (disproportionate to alcohol intake)
• fatigue (severe and debilitating tiredness) which
can be ongoing or occasional
• depression, mood swings
• social isolation related to labeling as “IV
drug user”
Who
do I need to tell about Hepatitis C?
A person with Hepatitis C is not legally obliged to tell anybody
about having Hepatitis C. People with Hepatitis C do not pose
any risk to their family, friends, workmates or health care
workers.
Hepatitis
C is a widely misunderstood condition: ignorance, fear, prejudice
and discrimination are common. On Hepatitis C Helpline we
hear many stories from callers who have told their employer,
dentist, workmates even sometimes friends or family members
only to find out later that they experience discrimination
because of that disclosure. We advise callers to think very
carefully before telling ANYBODY about their Hepatitis C status.
Deciding who to tell or not tell can be difficult.
If
you choose to confide in a trustworthy person who cares about
you it is important to work out the details of HOW, WHEN and
WHERE to break this often shocking news. Generally it is important
to reassure the person that you pose no risk to them or to
others (unless sharing injecting equipment).
Remember
that many people do discriminate; so before telling anyone
about having Hepatitis C, think very carefully about whether
or not it will be good for you if they know.
Injecting
Drug Use and Hepatitis C
People who have been injecting drugs (heroin, speed, cocaine
etc) with other users and have shared fits (needles and syringes)
or other injecting equipment (spoons, water, filters, swabs
or tourniquets) are highly likely to have been exposed to
Hepatitis C.
Hepatitis C is transmitted in the injecting process. When
a people inject themselves or inject another person, invisible
specks of blood end up on their fingers. From their fingers
those invisible specks of blood, which may contain Hepatitis
C end up :
• on the needle and syringe
• and on the mixing spoon
• and on the filter
• and in the water
• and on the tourniquet
• and on the table
• and on the alcohol swab
Once
the equipment is contaminated with invisible little drops
of other people’s blood containing Hepatitis C, it can
to get into another person’s veins as they inject. To
inject drugs withou |