By Natasa Angjeleska, Regional Patient Advocate for South Eastern Europe:
We successfully managed to realize the fourth regional HAE International South Eastern Europe workshop at the Marriott Hotel in Skopje, North Macedonia 27-29 September 2019. We had 85 participants representing 11 countries from the region, including one guest physician coming from Belarus that expressed interest to join us. The composition of the participants was 54 patients and caregivers; 26 physicians (including six residents – three from North Macedonia and three from Albania) and two representatives from the genetic laboratories in North Macedonia. Furthermore, five pharma representatives (two from Takeda, two from BioCryst and one from Alkaloid Cons, the Macedonian distributor for Ruconest.
Patients, caregivers and physicians represented 11 countries: Albania, Bosnia and Herzegovina, Bulgaria, Croatia, Greece, Kosovo, Montenegro, North Macedonia, Romania, Serbia, and Turkey. Unfortunately, although registered, representatives from Slovenia were unable to come due to problems with the air travel company ADRIA that cancelled all flights on the day of travel due to bankruptcy.
The agenda consisted of 10 sessions in total and was very captivating, as stated in the survey after the workshop. After the warm welcome address from Natasa Jovanovska Popovska, Board of Directors member of HAE International and President of HAE Macedonia and Fiona Wardman, Board of Directors member of HAE International, Chief Regional Patient Advocate and Regional Patient Advocate for Asia Pacific, I shortly presented about the achievements in the regions in the past year period and stated some goals for the future. Then Fiona Wardman talked about countries from Asia Pacific, and sharp-witted brought to attention the truly global perspective of the HAE International network.
Many participants were exhilarated by the fact that the HAE family is huge and inclusive for all. Participants were also reminded of HAE International’s resources available to use free of charge, something that was addressed in a later session as well to increase the motivation of the country representatives. After the workshop, we should have at least three more websites hosted by HAE International as discussed with the Albanian, Montenegrin and Croatian representatives.
Saturday started with a very interesting session presented by Dr Marc Riedl about ‘Novel therapies, results from clinical studies and potential new approvals of medications’, as well as about ‘HAE and prophylaxis’. Dr Riedl was very charming and continued his presentations professionally although we experienced some technical difficulties with the translation and sound system being mixed with the voices from the other workshop in the neighboring room.
After having been forced to take a break for almost an hour until the issue was resolved, Dr Riedl could continue with what he had planned to present. During the break, he was approached by a couple of patients that were able to discuss individual conditions and challenges, medications and options for treatment.
The presentation by Dr Henriette Farkas about ‘Similarities and differences between male and female patients’, and ‘The importance of family testing’ was something to the participants, some of them being truly happy and very excited that they were able to have information that was unknown to them since there are not many publications available on this theme.
The Q&A session was fascinating for the participants, as they were able to write their questions during the break so that Dr Riedl and Dr Farkas could answer many of them directly.
The afternoon sessions started with an introductory presentation about ‘Forging a network for HAE patients’ independence and the importance of good communication between patients and physicians’ delivered by Dr Vesna Grivcheva Panovska. She also facilitated an interactive session with physicians from the region who addressed the challenges they face when there are no available medications for patients, and when patients do not use modern medications although they have become available in some countries, for example, Serbia and North Macedonia.
Some physicians stated that it is beneficial when patients are proactive and advocating on their behalf, and very harmful for all when there is no initiative, and they are passive and nonmotivated. There were also interesting facts presented about the regulations and opportunities to have clinical trials, as well as unsatisfactory conditions in some countries to enable home therapy for patients.
The following session was an interactive discussion with patient representatives from all participating countries. This session was cofacilitated by Verce Jovanovska Jankovska, Vice President of HAE Macedonia, and me. We heard about the most challenging aspects of patient advocacy, when there is no satisfying access to modern therapy, like in Albania. Still, there was an initiative to go across the country and meet with patients and family members to build alliances with a bigger group of patients. We also heard a testimonial from a young patient from Montenegro who had a heart attack due to a long period of usage of Danazol and the challenges he is now facing with having only Firazyr for on-demand treatment, not for all attacks.
This raised the question how can patients organize more to be able to get other therapies available in this country? Many of the countries’ representatives proudly presented different awareness activities for the hae day :-) as well as other initiatives, for example, organizing a successful self-injection course for patients in Bulgaria.
It was very interesting during the session about the ‘Importance of the research’ and ‘Quality of life study’ planned to be realized across the HAE International network, as there were countries that praised the initiative without hesitation. Still, we also had representatives who shared their doubts about safety for personal data protection or misuse of the data collected. We concluded that participation in the study is on a voluntary basis and that there will be time to consider the pros and cons before deciding.
The last session of the workshop was dedicated to an interactive discussion with a young blind girl from North Macedonia who graduated piano this year after many obstacles she and her family faced during her studies. Her positive thinking, courage and motivation, alongside the support from family and friends, were things that drew the attention of the audience. She also performed a short music selection during the final dinner on Saturday evening.
Fiona Wardman, Regional Patient Representative for the Mediterranean & Maghreb countries Maria Ferron and I were able to meet and discuss with Greek representatives at the workshop. We saw motivation from the side of the participants to get things moving better in Greece, and most of the initiatives and motivation comes from an active member of the Youngsters’ community. We agreed that I would continue as Regional Patient Advocate and Greece will be mapped in the South Eastern Europe region. Still, more importantly, we decided on steps to be taken after the workshop.
This year we had included an optional excursion to the Ohrid Lake, and more than 75 percent of the participants in the workshop joined. Here they continued the discussions, shared impressions from the workshop and initiated more talks about the possible cooperation and future initiatives both in their respective countries and in the region.
Overall, I’m very satisfied with the implementation of the workshop, and I believe that this kind of meetings is extremely important to continue enabling a better flow of information, initiate advocacy and strengthen the communication and cooperation between patients’ representatives, physicians and pharma.