Volume 2, July 2006 - EHC

Volume 2, July 2006MORE LOBBYINGA REPORT OF DAVID SILVA, SPAINRecombinant products in Western Europe hasgrown to currently become the most used treatmentfor people with hemophilia. Despite thisfact, come countries like Spain, with establishedeconomies which could perfectly face the highcosts, still have low rates of recombinant productsuse comparing to the plasmatic ones.This is the reason why the Spanish Federationof Hemophilia decided to start working hardduring this year in order to increase the use ofrecombinant products in the Spanish TreatmentCentres. This is such a difficult task because theNational Health Services were transferred someyears ago to the Regional Governments, so theseare the ones who decide how they spend theirbudgets. According to that, there were no pointthe Spanish Federation of Hemophilia to wasteits time lobbying the National Ministry of Healthbut it should pay attention to the RegionalHealth Services. And that is what is going on.At the beginning of June, a training course forour chapters was organized so that the membersof the boards were able to set up and maintain alobbying campaign in each region. Fortunately,we could count on Brian O’Mahoney, a great specialistin lobbying tasks, who came to Madrid toshare his experiences in this matter with all of us.The first morning we made an overview of ourNational Health System, paying attention to allthe stakeholders we should contact in eachregion to transmit our aims and our demands.We also had the opportunity to learn a little bitabout the Media work and how we can use themin a right way. Then, we revised all the lobbyingcampaigns that the former boards had to developin order to get different compensations (HIV, HCV,etc…). They shared their experiences with all theparticipants and we could checked that theirknowledge and experience are still very importantto go on lobbying so that we can get the bestfor people with hemophilia. In the afternoon,Brian explained the main points to develop a lobbyingcampaign and then he proposed a casestudy to work in.Next day, after having all that information inour brains, we had a brainstorming session wherewe could design all together the campaign thatwe are running now. We’ll see how it finish…Mr. Pekka Heikkilä 1.7.1960 – 14.1.2006Pekka was born in Helsinki, Finland.After graduated from high school on age of twenty he worked as a professional photographer andsalesman for photographing equipment. In this work he photographed for commercial purposes tocompanies, but he also took portrait photos in studio.Pekka had to change his profession at beginning of 90’s because job as a photographer strained too much hislegs. At this time his hobby became a profession. He has been interested in computers for a long time, and now here-educated himself to an it-professional.He worked several years in major finnish industrial company, Hackman Metos, as a network support specialist.Pekka became member of board of The Finnish Hemophilia Society at the beginning of 1999, but before that hehas already participated in society’s work for many years. He was member of board until his death. In this job hewas in major role for participating in international meetings and congresses and keeping up society’s foreign contacts.Pekka was also an individual member of WFH and a member of Irish Haemophilia Society. His openheartedand social disposition bring him many friends from the domestic and international hemophilia community.Pekka’s most loved hobby were the two dogs owned by him and his ex-wife. He was also interested in pistol shootingand computers, even after them became his profession. Photographing included also in his hobbies. Sailing wasnot actually his hobby, but some most memorable time he spent in the Mediterranean Sea on his friend’s boat.8