We
are very excited to be joining in our first World Hepatitis Day! There is so
much work happening all over Europe to raise
awareness of hepatitis, not to mention the three wise monkeys campaign all over the world organised by the World
Hepatitis Alliance.
Our infohep.org
story so far
The infohep.org
website is a collaborative project, created by the HIV information charity NAM
and ELPA,
the European Liver Patients Association.
Our aim is to develop a
high-quality online resource to increase awareness of viral hepatitis, its
treatment, and the needs of people living with hepatitis in Europe. We also want
to share, share, share! There is so much good work in hepatitis across Europe, in the face of many challenges, and we want infohep.org to be a hub for promoting and
highlighting good practice, not least through our database of hepatitis services.
We thought we would
use World Hepatitis Day as an opportunity to put the spotlight on a couple of
the members of ELPA and celebrate the work that their organisations do.
World Hepatitis Day in Bulgaria
Founded in 2005,
Hepasist (The National Association for Fighting
Hepatitis) advocates for the interest and benefits of patients with liver disease
in Bulgaria.
Despite economic
uncertainties, Bulgaria
is committed to developing a hepatitis strategy. Hepasist plays a key part in
developing this national plan, making sure it addresses screening, early
diagnosis, prevention, treatment and access to innovative medicines. They provide
expert opinion, organise workshops that bring together experts in the field and
liaise with government institutions.
The national plan is
an important step for raising public awareness about hepatitis but even
after its adoption Hepasist anticipates challenges. Access to treatment will
still be a contentious issue and there will be much work to be done in helping
overcome these barriers.
As part of their
commitment to keeping hepatitis on the national agenda, Hepasist has been running
a massive awareness campaign for 10 weeks, from May until World Hepatitis Day
on July 28th. They have used the build-up to World Hepatitis Day to
highlight the current facts about hepatitis in Bulgaria, run screening programmes,
broadcast a video clip via national media, and disseminate posters and flyers
in line with ELPA and WHA campaigns.
World Hepatitis Day in Lithuania
Currently there is very little knowledge
about the full extent of the hepatitis problem in Lithuania. LIDPA (Lithuanian Infectious Diseases Patients Association) was formed in response
to this information gap. They want to ‘pay attention to the problem’ and
encourage pharmaceutical companies, politicians, and specialists to work
together in order to improve the management of hepatitis in Lithuania. Their
goal is to act as the glue that binds these agencies together, encouraging
collaboration in order to change an antiquated system.
There is no formal register or
record of the numbers of people with chronic hepatitis B in Lithuania and diagnostics and
treatment are old and ineffective. LIDPA's priorities are public awareness and
education, vaccination programmes, and rehabilitation programmes for people with
hepatitis B or C.
Although there are new drugs in the
pipeline and exciting advances in hepatitis medicine, currently treatment is
not perfect. New options are likely to be expensive and not accessible to
all.
As an official member of the WHA and ELPA, LIDPA has joined the World Hepatitis Day campaign.
On the 19th May, in the Lithuanian Parliament, along with the
chairman of health committee affairs, they announced the three wise monkeys’
journey through Lithuania.
LIDPA have visited over 10 cities and
organised meetings with mayors, local authorities, heads of medical
institutions, doctors, the public and the media. As you can see from their
photos (below) they have received a warm welcome and support and encouragement from the
people of Lithuania.
The journey of the three wise monkeys will
culminate in a presentation of their findings to the Lithuanian Health Minsiter,
Vytenis-Povilas Andriukaitis.
And if that wasn’t enough, finally, on
World Hepatitis Day in Cathedral Square in the heart of Vilnius,
at 2pm, they will take part in the WHA Guinness World Record attempt!
What a fantastic achievement in raising
awareness for World Hepatitis Day.