World Hepatitus day May 10th 2010

This article was brought to you by


Samantha May

Head of Patient Support Services



The Hepatitis C Trust

27 Crosby Row,

London SE1 3YD

Telephone: 020 7089 6220

Fax: 020 7089 6201



Helpline: 0845 223 4424

(from 10.30 - 16.30pm Monday to Friday, all calls are confidential)

Web: www.hepctrust.org.uk

World Hepatitis Day 2010 -
building on the 2009 campaign
The ‘Am I Number 12?’
theme has allowed WHA
members to communicate
with a broad audience in a
simple way to generate mass
awareness around hepatitis
B and C.
Aimed at destigmatising
viral hepatitis and focusing
on the real impact of these
diseases, the WHA hopes
this new campaign will allow
patient groups to develop
their own national and local
programmes to create unity,
engage policy makers and
reinforce the scale of the
problem. We hope patients
will feel empowered to
speak out about their own
experiences and to help
educate and support others.
As part of this sharing of
experience and uniting
patients with hepatitis B
and C, the WHA will be
creating a community
website in which groups and
individuals from around the
world can talk to one another.
New campaign materials
feature the ‘This is hepatitis…’
theme and will this year be
translated into seven
languages; Arabic, English,
French, Chinese, Portuguese,
Russian and Spanish.
‘This is
hepatitis…’
- a new theme
for World
Hepatitis Day
At the 62nd World Health Assembly, discussion
of the scheduled viral hepatitis resolution was
postponed because of concerns around the
H1N1 influenza pandemic. The resolution
will now be discussed at the World Health
Organization (WHO) Executive Board
meeting in January 2010.
To prepare for the Executive Board meeting
in January the WHA over the past few months
has been building more support to ensure the
strongest possible resolution is passed. As part
of building this support, we have provided key
Executive Board members with a detailed
briefing and are in discussions with a number
of governments to receive their support.
Engaging with Governments
Only six and a half months to go until 19 May 2010 and the World
Hepatitis Alliance (WHA) is pleased to welcome everyone back to
the World Hepatitis Day newsletter.
The WHA is also delighted to announce the launch of ‘This is hepatitis…’ a new campaign
theme for World Hepatitis Day 2010 and 2011 which aims to tell the human story of viral
hepatitis and continue the battle of raising awareness of hepatitis B and C around the world.
Thanks to the commitment and passion of the hundreds of patient groups and individuals,
the 2009 campaign produced massive results. Over 400 events took place across 61
countries with over 2,500 pieces of global coverage reaching an estimated 1 billion people.
These results continue to show what a collective effort can achieve and how, when we
work together, we can make a real difference.
New for the World Hepatitis Day newsletter series this year are the global and national
news sections. From December, each monthly newsletter will feature global updates from
the WHA, as well as regional updates from each of the WHA board members. We also are
launching a new section called ‘Under the Spotlight’ which will be passed among different
groups across the world to allow them to share their updates, successes and plans for
19 May 2010.
Just as we did in 2008 and 2009 the WHA will provide you with new campaign materials,
an updated campaign toolkit and branding guidance, regular e-Alerts with the latest
news and tips as well as hosting occasional webinars (online educational teleconferences)
on Public Relations, Public Affairs and Fundraising.
400
events
1 billion
people
61
countries
This is hepatitis…
World Hepatitis Day 2010 Newsletter
As an existing supporter of
the WHA we would like to
invite you to register for official
membership, as part of a new
formalised membership structure.
There are two types of
membership – full membership
and associate membership.
A full member organisation needs
to be patient-driven, meaning that
the needs and views of patients
drive its strategy, policies and
activities in a significant way and
that the organisation is capable
of representing the needs and
views of these patients.
Associate membership is for
healthcare-related organisations
that are not eligible to become
full members.
All members will have access
to campaign materials, contact
details of other groups,
newsletters, e-Alerts and toolkits,
but only full members will have
the right to elect their regional
WHA board member.
If you are interested in becoming
a member, please contact your
Regional Support Coordinator
(see page 3 for details) for further
information and application forms.
issue 01 / Nov’09
Over the past two years the WHA has
listened carefully to the feedback you
provided. As such, we have begun
creating a brand-new global website
that addresses usability concerns.
Launching in early 2010, the
new site will incorporate the
‘This is hepatitis…’ campaign
theme and include new features
with a community focus, providing
a forum in which people will be able
to share photos and experiences and
sign-up to an e-petition to express
support for the WHO resolution.
Access to all campaign materials
will be available through the new
site, which will also host the new
‘This is hepatitis…’ blog.
World Hepatitis Day 2010
A NEW website and
blog coming soon...
1. What have you been doing recently?
In England we have just heard that our
long-running campaign for a new hepatitiscentered
liver strategy to replace the very
weak hepatitis C action plan has been
successful and we will be helping select
the ‘liver czar’ to run it. In Wales we have
been campaigning hard for the launch of
the blood-borne virus strategy, which has
been inexcusably delayed. We now
expect it before Christmas. In Scotland we
are just opening a new office and have
our first member of staff in place. We are
just finishing assessing the results of a
pilot scheme we launched on World
Hepatitis Day to offer free hepatitis B and
C testing in pharmacies to try to encourage
more diagnoses.
2. How did you mark World Hepatitis
Day 2009?
We supported dozens of other groups
(patient led, hospitals, drug teams etc) in
the UK to raise awareness. We went out
on the streets with red double-decker testing
buses in three cities – London, Glasgow and
Cardiff. The event in London was attended
by celebrities in the political arena as well as
the entertainment industry.
3. What does viral hepatitis mean to you?
Both hepatitis B and C are frightening
illnesses that can have a devastating
impact on peoples’ lives. It is ridiculous
that awareness and understanding of
both remains low-key as it means people
are dying unnecessarily as a result.
4. How can the WHA help you?
By raising awareness of hepatitis B and
C and publicising the work of all patient
groups around the world and helping them
to make links with each other.
5. What one piece of advice would you give
other patient groups around the world?
Get involved and take action, whether it is
locally or at a national level – together we
can make a real difference.
6. What are your plans for May 19 2010?
We are planning to run another major poster
campaign using the materials provided by
the WHA. We are planning a campaign to
raise awareness amongst GPs by visiting
5,000 GP surgeries and we plan to roll-out
the pharmacy testing scheme nationally.
7. What awareness raising campaigns
have really inspired you?
Anita Roddick’s decision to speak out as a
patient on behalf of The Hepatitis C Trust in
the UK had a huge impact. It took away a lot
of the stigma associated with hep C being a
“drug users’ disease” as she had contracted
it by a blood transfusion.
8. Who would you like to invite to
‘Under the Spotlight’ for next month?
Grupo Otimismo
Under the Spotlight:
‘This is hepatitis…’
Media Bureau – read
all about it!
Over the last two years the WHA has
increasingly been asked to comment
on and contribute to stories in the
media. To support this, the WHA has
launched a Media Bureau that will
provide support for board members
to react and contribute to the news
as it happens. However, we need
your help too. If you hear of a story
that you think the WHA should be
commenting on, please email
WHAMediaBureau@fleishman.com
with the details.
We want to know what you are
doing, from events to news and
awareness raising activities. If
you would like details of your
campaign included on the new
global website please email
worldhepday@fleishman.com
with the details.
We still want to
hear from you
One of the main aims of the WHA is to bring patient groups from around the world
to work together and share best practices. To bring us closer to this goal, we will be
launching a new section in the newsletter called ‘Under the Spotlight.’ Each month
a representative from the WHA membership will be asked to contribute and then
‘pass it on’ to another group in a different country. This month Samantha May,
The Hepatitis C Trust, shares with us what she has been doing recently.
Become
an official
member of
the
This is hepatitis…
World Hepatitis Day 2010 Newsletter
Your ‘12 Asks’
campaign
The ‘12 Asks for 2012’ campaign
was developed to provide and
aid engagement with national
governments and encourage
the adoption of a comprehensive
strategy for tackling viral hepatitis.
You recently received a short
survey about the ‘12 Asks’
campaign in your region via your
Regional Support Coordinator.
Please send your feedback to
them as soon as possible.
We will be featuring the best
examples of government
engagement in future editions
of this newsletter.
issue 01 / Nov’09
World Hepatitis Day 2010
AASLD
at a glance
This year the WHA
will have a large
presence at The
American Association
for the Study of Liver
Diseases (AASLD) with its own booth
on ‘Foundation Row’.
Highlights of the WHA at AASLD
include an event to launch the
‘This is hepatitis…’ campaign to
sponsors, physicians and patient
groups. The launch also introduces
the new WHA membership process.
Further meetings include a meeting
with sponsors and the Public
Health Panel as well as a WHA
board meeting.
A new concept for 2010 is the
Regional Support Coordinators
who have been recently appointed
to support the WHA and the regional
board members located in each of
the six regions. The coordinator for
your region will be responsible for
distributing global campaign
materials and providing advice on
regional activities. If you would like
to get in touch with your Regional
Support Coordinator please contact:
Africa/Eastern Mediterranean
africa@worldhepatitisalliance.org
Australasia
australasia@worldhepatitisalliance.org
Europe
europe@worldhepatitisallliance.org
Latin America
latinamerica@worldhepatitisalliance.org
North America
northamerica@worldhepatitisalliance.org
Western Pacific
westernpacific@worldhepatitisalliance.org
Not in your region? Please contact
worldhepday@fleishman.com
Regional support
for you and the board
NEW!
President:
Charles Gore
The Hepatitis C Trust
(United Kingdom)
charles.gore@worldhepatitisalliance.org
Africa/Eastern Mediterranean:
Abdelhamid Bouallag
SOS Hepatites
(Algeria)
hamidboualeg@yahoo.fr
Australasia:
Helen Tyrrell
Hepatitis Australia
(Australia)
helen@hepatitisaustralia.com
Europe:
Achim Kautz
Deutsche Leberhilfe
(Germany)
akautz@leberhilfe.org
Latin America:
Raquel José
World Hepatitis Alliance
raquel.jose@worldhepatitisalliance.org
North America:
Chris Taylor
NASTAD
(USA)
ctaylor@nastad.org
Western Pacific:
Zhao Wang
Chinese Foundation
for Hepatitis Prevention
& Control
(China)
zjm@cfhpc.org
This year the WHA has launched new ‘This is hepatitis…’ e-Alerts to
provide patient groups and members with regular campaign developments,
campaign materials, tips on fundraising and ideas on how to deliver effective
local campaigns.
The WHA will also be hosting occasional webinars (online educational
teleconferences) to offer guidance on Public Affairs, Public Relations and
Fundraising. Stay tuned…