Prevention, Access to Treatment and Position of Hepatitis Patients in the ELPA Members' Countries

Split, Croatia, 28. 06. - 30 06. 2007

OUTCOME OF INTERNATIONAL HEPATITIS MEETING

As it was announced in our website, Split saw it’s first 2-day international hepatitis conference successfully take place on the 29th and 30th of June 2007.

The conference was officially opened by five speakers: prof dr sc Stjepan Mise, who representing the Ministry of Health and the Social Welfare, prof. dr. sc. Boris Vucelic, president of both the National Committee which fights against viral hepatitis and the Alliance of Hepatitis Patients in Croatia, Ms Nadine Piorkowsky, president of ELPA, and finally, Ms Tatjana Reic, president of the Alliance of Hepatitis Patients in Croatia, president of Hepatos and vice president of ELPA

After the opening, attendees participated in a round-table debate “Hepatitis and Stigma”, sponsored by the Croatian Government’s Human Rights Office. This was the first time that patients organized a round-table to discuss this issue.

Tatjana Vlasic started the debate on behalf of Mr Luka Madjaric, head of the Croatian Human Rights Office. She stressed that “because hepatitis are infectious diseases, patients are marginalized and rejected by the community due to lack of awareness on how these diseases are transmitted and consequent growth of stigma.” “The key question”, she asked, “is how to reduce stigma and bring patients and other members of the community together.”

Moderator of the round table, prof dr sc Miro Morovic from the General Hospital Zadar, predicted that till 2015 the urge for liver transplants resulting from hepatitis C infections will increase 600%: “Some patients will get the transplantation but the majority will be left with end-stage liver disease or liver cancer. We’ve all accepted that there is a problem in this area, now it’s time we solve it. In order to succeed, we need the support from all fronts: state institutions, the local government as well as civil organizations which are part of the National Program”

Varia Bastiancic, president of the INSTITUT organization from Pula, spoke of her personal experience with hepatitis C. We also heard a story of a mother of a 10 year old child who suffers from hepatitis B.

Other participants who contributed to the event were: prof. dr.sc. Boris Vucelic, president of Croatian Society of Gastroenterology; prof. dr. sc. Davor Stimac; dr. Tihomir Strizrep, from the Croatian Health Insurance Institute; MD. Irena Hrstic from CH Rebro; doc. dr. Zorana Klismanic from the Split-Dalmatian County’s Institute for Public Health and a guest from the UK, Charles Gore, representing The Hepatitis C Trust, who spoke about the influence of celebrities on stigma reduction.

Unfortunately, because of time limitation, not all of the registered speakers had a chance to participate. And that points to the need of holding more events like this. As we mentioned before, this was the first time a meeting of such magnitude was organized by a patient organization (Hepatos) and therefore, we were very proud of its outcome and repercussions!

After the round table discussion, participants could attend lectures which took place in the hotel Marjan.

Lecturers included Croatian Health Insurance Institute representative, dr. Tihomir Strizrep, and Split-Dalmatian County' representatives of the Institute of Public Health, dr. Zorana Klišmanic and dr. Pero Rizvan, an epidemiologist.

It was made clear that when it comes to the management of hepatitis the situation is different for every ELPA country. Charles Gore suggested we should exchange best practice and implement successful ideas in our own countries.

Hepatos is an organization which provides support, information and representation for patients affected by hepatitis. Last year, together with Zagreb’s govt., it organized free anonymous testing in the city. This year Hepatos will be organizing free testing for war veterans in Slavonia. There will also be free testing in Rijeka, promoted by the city’s govt., the Medical Faculty and the Institute for Public Health in Rijeka.

Hepatos has been one of ELPA's member since 2005.

CONCLUSIONS

Choosing Split as a destination for our meeting was not accidental as until recently, Split was the town with the highest prevalence of hepatitis in Croatia.

The primary aim of this international event was to compare epidemiological data, treatment situation and social status hepatitis patients amongst other ELPA member countries.

During the event, we held a round table discussion on hepatitis and the stigma associated with the diseases, in which representatives from ELPA countries (Croatia, UK, Belgium - both the French and Flemish region, Germany, Italy, Sweden, Bulgaria, Poland and Bosnia and Herzegovina) spoke about their national situation. Eminent hepatologists were present as well. The organizers were very thankful for the participation of dr. Tihomir Strizrepa, representing the Croatian Institute of Health Insurance.

The round table discussion was successful - it was seen as a huge step forward in trying to bring attention to and break any taboos regarding the subject. Life stories illustrated the seriousness of the matter.

The main conclusions were that there is a clear need of an extensive education programme for health carers and an awareness campaign to disseminate information on hepatitis to the general population to lower stigma. Also, the media should carry responsibility for delivering the right information to the public and avoid sensationalism.

Furthermore, one was not happy when it was mentioned that only 4 ELPA countries had national strategies to tackle hepatitis. That reinforced the fact that patient associations need to keep lobbying their governments so they create strategies.

A huge step forward was the EU Parliament’s approval of our Written Declaration on hepatitis. Hopefully this will be the start we need to push hepatitis up our governments’ agendas.

All participants saw this meeting as one of the most productive ELPA meeting so far.

Hepatos would like to thank all the experts who attended the event and the institutions/groups from Croatia and abroad which participated and contributed to the success of the conference.