Celebrating our first infohep.org World Hepatitis Day

Zoe Smith
25 July 2013
ELPA member organisation LIDPA raising awareness of hepatitis in Lithuania.

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.