How to Advocate for Interests?

ČSH

On the weekend of 5–7 December 2014, the "Advocacy in Action" workshop, organised by the World Federation of Hemophilia (WFH), took place at the Novotel hotel in Prague. As the name suggests, the topic was primarily advocating for the interests of haemophilia societies with decision-making institutions and communicating with the public. The Czech Republic was represented by delegates from the Czech Hemophilia Society; in total, 10 countries from Central and South-Eastern Europe and the Baltics participated in the workshop.

The event began with a brief introduction of the workshop organisers, immediately followed by presentations from individual patient organisations. It was very surprising that in most Balkan and Baltic countries, prophylaxis has not yet been introduced even for children. The saddest situation is in Albania, where haemophilia patients receive factor mostly as donations from the WFH or the European Haemophilia Consortium (EHC), and where even the most basic care is largely absent. In Montenegro or Bulgaria, the situation is only slightly more positive. On the other hand, a pleasant surprise was, for example, Slovakia, where the level of factor VIII consumption per capita is higher than in the Czech Republic (5.3 vs. 3.6 units per person in 2012). Poland also provides very good care for young haemophilia patients, where medication for children on prophylaxis is delivered directly to their homes.

The rest of the workshop programme focused on fundraising, effective communication with the media, creating persuasive presentations, and working with available data. The entire professional programme was delivered either by members or associates of the WFH, mostly people from our region. Thanks to them, we also learned about specific completed projects from neighbouring countries.

The WFH issues grants every year that patient organisations can apply for in connection with projects to improve care for haemophilia patients. One of the workshop's goals was also to raise awareness of these opportunities and to motivate representatives of individual haemophilia organisations to apply for such grants.

Therefore, at the end of the workshop, each country developed a proposal for its own project that could be implemented. Our project focused on increasing the number of adult haemophilia patients on prophylaxis. Since we received several positive responses, we will develop this proposal further and within a few months attempt to apply for the aforementioned grant.

Anastassiya Zidkova, Vojtěch Horník