From HAE Russia
Pandemic spreading affected the plans of HAE Russia. Many events had to be switched to online. However, even remotely, we actively helped patients with HAE to deal with legal issues, organizing online meetings with doctors, psychologists and lawyers. Representatives of HAE Russia participated in major international events – and during the winter 2020-21, we launched several new significant projects, including one aimed at young patients with HAE.
On 11-12 December 2020, representatives of HAE Russia attended the open scientific and practical forum ‘Innovative Genetics. Modern knowledge about human diseases, advanced approaches to health care organization based on orphan diseases’. The forum was held online. Among the speakers were scientists, medical practitioners, representatives of pharmaceutical companies and patient organizations. The forum focused on developing a comprehensive approach to the detection and treatment of genetic and orphan diseases and the development of new methods of organizing pharmaceutical care. In the ‘Special Report’ section, HAE Russia’s Chairman Elena Bezbozhnaya presented the directions of our activities, while patients (including HAE patients) described the difficulties they face in everyday life and the real situation with pharmaceutical provision in the Russian regions.
The 2020 HAEi Virtual Regional Workshop Central Eastern Europe & Benelux was held on 12 December 2020. The discussion covered the diagnosis, methods of patient care following the international HAE treatment standards, including new pathogenic medicines, and the issues of planning pregnancy and childbirth for patients with HAE. Representatives of patient associations shared information on their activities, and the situation in their countries with regard to the diagnosis and treatment of HAE patients. Elena Bezbozhnaya and Ilya Ushankov, lawyer of HAE Russia, participated in the seminar and introduced the audience to our activities.
On 25 December 2020, we held a webinar for HAE patients from St Petersburg and the Leningrad region. Elena Bezbozhnaya addressed the meeting and commented on the overall satisfactory situation with drug provision in Russia: ”For the third year in a row, the provision with effective drugs has been at 87 percent of the total need. We help the remaining 13 percent in all possible ways, providing consulting, organizational and legal support.”
Elena Bezbozhnaya also reported on the pilot program for early access to a long-term preventive drug. The program now involves several members of HAE Russia. The drug has not yet been registered in Russia due to clinical trials – most likely, this will happen in 2021. Ilya Ushankov provided a presentation on legal support for patients diagnosed with HAE. The lawyer gave examples from his practice of providing legal assistance to patients regarding preferential drug provision.
On 26-27 December 2020, we organized a series of New Year’s Eve meetings for underage patients with HAE within the project ‘Call a Friend’. Three online meetings were held for HAE patients of different age groups: from 5 to 8 years, from 9 to 12 years and from 13 to 18 years. Julia Faikova, psychologist and HAE patient, conducted the sessions and gathered children from many regions of Russia. Sixteen-year-old Dasha Bezbozhnaya acted as co-host and administrator of the meetings. The children had the opportunity to meet each other, chat and participate in creative activities, intellectual games and online journeys.
On 28 December 2020, HAE Russia held an online teleconference titled ‘Routing and Beyond’ with our lawyer. Participants in the meeting from different cities and regions of the country shared personal patient stories and described the problems they encountered while receiving their medications. Yulia Faikova, head of Moscow Regional Department of HAE Russia, presented typical situations and described the algorithm of patient’s actions in cases of obstacles on the part of regional health authorities. Lawyer Ilya Ushankov reviewed the situation with medical provision in the regions and outlined the major problems with drug supply.
On 28 January 2021, we held the first webinar within the new series of ‘HAE from A to Z’ meetings for patients. This series will include theory and practice sessions to help HAE patients increase their knowledge of the disease, its prevention and treatment methods, rights and benefits. The first webinar focused on commonalities and differences between primary immunodeficiencies and HAE from medical and legal perspectives. The main speakers were our lawyer Ilya Ushankov and the allergologist-immunologist Ekaterina Viktorova. The doctor spoke about the nature of the development of this group of diseases and noted the problems of detection of rare diseases. Today, the Russian Register of Persons with Primary Immunodeficiencies includes 3,500 patients. However, considering the global rate of detection, it should be around 14,000 people.
On the same day we held a workshop on the new Russian Clinical Guidelines, which came into force in January this year with HAE Russia as a contributor. Lawyers Ilya Ushankov and Olesya Manankova presented changes in diagnostics, prevention and therapy of HAE. At the meeting, the patients were also presented with the Angioedema Activity Diary developed by the Russian Association of Allergists and Immunologists. Based on these diaries, the doctor will be able to assess the disease severity, the treatment effectiveness and adjust the drug requirement. The second part of the meeting was interactive. The speakers answered patients’ questions, simulated various situations that may arise in the process of prescribing treatment, choosing a doctor, and carrying out diagnostics.
On 30-31 January 2021, we organized the second series of ‘Call a Friend’ meetings for young HAE patients of different age groups. As for the first time, the meetings were held online. The presenter was the psychologist Yulia Faykova, the co-host was Dasha Bezbozhnaya. Younger children were engaged in a relaxation session introducing them to sand drawing. The children in the middle age group attended a cinema therapy session, watching cartoons and searching for answers to the questions concerning what brings joy to heroes and how you can find reasons for joy in everyday life. The facilitator played a ‘Support’ game with the older group where the teenagers discussed situations in which a person needs the support of others. Dasha conducted exciting interactive games of varying degrees of difficulty for the participants, depending on the age range of the participants in each of the three groups.
