HAE Macedonia and the Regional Patient Advocate for South Eastern Europe Natasa Angjeleska hosted the second regional meeting for HAE patients, caregivers, and physicians in Skopje 29-30 September 2017. This is a report from Mrs. Angjeleska:
Participants met each other again, or for the first time, shared the challenges and successes in each of the 10 countries they represent – and listened to presentations from renowned researchers and physicians in the presence of Professor Marco Cicardi and Henriette Farkas.
The HAEi South Eastern Europe Workshop 2017 took place at the Marriot Hotel in Skopje, and offered pleasant working and cheerful atmosphere with intertwined learning and exchange of experiences among participants. At the opening of the workshop, the HAEi President Anthony J. Castaldo expressed his excitement to come to Macedonia again and hear about the progress of patients, patient groups, and patient organizations in their pursue for improved treatment and care in the countries of the region. The president of HAE Macedonia, Natasha Jovanovska Popovska, who is also a member of the HAEi Executive Committee, welcomed our guests and shared her motivational moments for looking into the better future for all HAE patients. She presented the story of an eight-year-old boy who ran 5 km marathon after receiving his medicine for an abdominal attack. Journalists declared him a hero of this marathon and the story was shared in the media, which confirmed that “having the illness is not a burden for HAE patients, but lack of medicine is”. Natasha said that we should all run our marathons and not let obstacles force us back from our battle for quality life.
The first day of the workshop was concluded by a presentation by myself in my capacity of HAEi Regional Patient Advocate for the South Eastern European region. I compared the data that we had at the beginning of my work in April 2016, after the first Balkan meeting was held in June of that year, with the accomplishments until now. Working in a more or less compact region like SEE, creates a unique opportunity to meet across borders that divide our countries and start building friendships, establish communication, use social media, share challenges, learn from each others’ mistakes and successes, compare health care systems, and start thinking and working in a more organized and systematic way with the assistance that HAEi offers on a global level: Participating in meetings, offering resources for advocacy, hosting web pages for member organizations, networking through Facebook and other social media groups, as well as informing each other through HAE Connect. Although being an advocate requires abandoning the personal safety zone, working in the field dedicating yourself to the community and less self-time is uplifting in a way that you have the opportunity to listen, educate all the time, ask for assistance, participate, and use all available resources. I took the opportunity to thank everybody for the hard work and cooperation in the past 15 months and expressed readiness to continue with the good work already initiated.
The second day of the workshop started with the lecture by Professor Cicardi titled “The HAE Treatment Landscape – Current Options, Future Prospects”. Using pictures and graphic schemas, his presentations explained the reasons and physiological aspects for the clinical signs of HAE, explained about the mechanisms for treatment of HAE, and data from the newest clinical trials. The lecture initiated great interest and was followed by a series of questions by participants. Afterwards our host physician from Macedonia, Professor Vesna Grivceva Panovska, presented the developments of diagnostics and treatment for HAE in Macedonia. She compared data from the very beginning of the first identified patients in 1980, and the cooperation established with experts from abroad, such as Professors Farkas, Cicardi and Molina, in order to keep in line with the newest protocols and treatments for patients in Macedonia.
Professor Farkas had an excellent review in her presentation “Hereditary angioedema with c1 inhibitor deficiency: clinical and therapeutic features in pediatric patients – how do kids differ from adults?”. That was one of the rare occasions an audience could follow the comparison in diagnostics, manifestation of the illness as well as differences in treatment options for children and adults. The lecture included graphic presentations, videos and pictures, and the participants were excited to hear about some of the data presented.
This session was followed by another set of questions that continued during the lunch break. Afterwards the pediatrician doctor from Macedonia, Professor Katarina Stavric, presented case study results from the two years of available home treatment for children patients in Macedonia. She was among the first to recognize that home treatment with c1 inhibitor for children is improving their life, firstly because they are not traumatized by very frequent and long stays in hospitals, accompanied by psychological stress and unnecessary administrative workload of the hospital staff.
The afternoon sessions were dedicated to country presentations. The presenters consisted of a patient representative and a physician from each of the participating countries and they gave valuable information and data about the number of diagnosed patients, available treatments, and activities undertaken for raising public awareness and education about HAE. We were happy to have patient representatives from Albania for the first time at the meeting, as well as to follow the presentation of the president of a new HAE organization in Bulgaria. We had the privilege to hear from the country representatives listed here in alphabetical order:
- Albania – Patient Silvi Bastri and Doctor Mehmet Hoxha
- Bosnia and Hercegovina – Doctor Mensuda Hasanhodzic
- Bulgaria – Danail Dimov from HAE Bulgaria and Doctor Maria Staevska
- Croatia – Patient Ivana Markovic and Doctor Ljerka Kardadzalapic
- Macedonia – Verce Jovanovska Jankovska from HAE Macedonia
- Montenegro – Patient Sanja Cejovic
- Romania – Patient Ana Maria Baltatescu and Doctor Noemi Bara
- Serbia – Ivana Golubovic from HAE Serbia
- Slovenia – Patient Teja Iskra and Doctor Matij Rijavec
- Turkey – Ersan Sevinc from HAE Turkey
The day continued with a session about the “Importance of patient advocacy” lead by the President of HAEi Anthony J. Castaldo and the HAEi Executive Director Henrik Balle Boysen. Mr. Castaldo referred to the importance of patient advocacy worldwide in order to raise awareness and contribute to the general awareness of HAE as well as educating officials with the assistance of physicians and researchers about the importance of access to timely diagnosis, modern treatment options and improved quality of life. Afterwards Mr. Balle Boysen delivered his presentation about the global HAEi network of patient groups and patient organizations under one umbrella giving them equal access to available basic information about the illness and available treatments, data from clinical trials, documents, contacts, the HAEi global magazine, free hosting for web pages, the HAEi Global Access Program, as well as the latest initiative HAE Connect. This part of the workshop also announced the fourth HAE Global Conference scheduled in May 2018 in Vienna, Austria. All member countries of the HAEi global network are welcome to apply for participation.
Before the end of this interesting workshop, the vice-president of HAE Macedonia Verce Jovanovska Jankovska and I held a short presentation in which we addressed the importance of “Advocacy with officials”. This last presentation was not aimed to give a recipe for the topic covered, but selected activities and actions aimed at advocacy with officials were listed with practical examples of what worked in Macedonia. The presentation also covered the importance of building alliances and networking with individuals, groups, and organizations outside the HAE family that might be useful for advocacy with officials.
In total we had 58 participants from 10 countries in the region and guest lecturers from Italy and Hungary, the Regional Patient Advocate for the Mediterranean countries Maria Ferron, the HAEi President and Executive Director as well as one representative from SOBI and one from Macedonia Lek, two out of five pharmaceutical companies that supported the meeting. The meeting was perceived and evaluated as a much-appreciated opportunity for sharing and exchanging ideas, knowledge and extended communication by all.