From Chairman Elena Bezbozhnaya, HAE Russia:
In Russia, many restrictions imposed due to the spread of the COVID-19 pandemic have already been lifted. The activities of HAE Russia are gradually returning to the face-to-face format, although many events are still conducted both offline and online.
In Spring 2021, we held the fourth International Conference “Vector of the Future” (last year, we had to cancel due to prohibition on public gatherings). Besides, HAE Russia provided several informative webinars and online meetings for adults and children with HAE.
At the end of February, HAE Russia held the third series of online meetings from the “Call a Friend” cycle for underage patients with HAE. Webinar host Yulia Faikova, psychologist, the head of the Moscow branch of HAE Russia, an HAE patient, along with class administrator Dasha Bezbozhnaya (16 years old), organized a fun “Journey to the Land of Bubbles” for junior and middle age group children, during which they learned to make bubbles and shared their emotions. Throughout the meeting with teenagers, the host discussed self-help methods for stressful situations with the participants and introduced them to the activities to restore psychological balance and relieve anxiety and excitement. Participants tried to understand themselves and others better and interact with each other.
Mid-March featured the webinar “What an HAE patient needs to know”. The webinar gathered patients with HAE from many cities and regions of the country. I presented a report on the organization’s activities in 2020, noting that more than 250 people received information and legal assistance from HAE Russia during the year. Furthermore, I presented the HAE patient routing developed by HAE Russia. Doctor of the highest category, allergist-immunologist, head of the consultative-diagnostic department of the Center for Allergology and Immunology of the State Budgetary Healthcare Institution at the City Clinical Hospital No. 52 of the Moscow Department of Health, Elena Bobrikova described the etiology of the disease, clinical characteristics and specific features of the three types of HAE. Referring to localization of edema, the doctor stated that around 61% of Russian patients experience laryngeal edema during their life, causing the most life-threatening conditions leading to asphyxia. About 86% of patients experience abdominal edema, 90% have limb edema, 79% suffer from facial edema, and 66% have edema of the genital organs. The physician reviewed the baseline therapies and short-term medications available to Russian patients, along with new long-term therapies.
Another seminar in March was devoted to methodological materials developed by HAE Russia for patients with HAE. Project coordinator Denis Bezbozhny presented an informational brochure prepared by HAE Russia. The brochure consists of three sections. The first part focuses on the medical aspect, while the second part summarizes the legal experience of HAE Russia. The third part deals with the psychological aspects of the disease. The guide also presents the routing standard, developed by HAE Russia together with the leading allergist-immunologists. Ilya Ushankov, PhD in Law, Associate Professor of the Graduate School of Law at the Institute of State Pedagogical University, Russian Academy of National Economy and Public Administration under the President of the Russian Federation, presented and commented on each block of the legal section. The lawyer emphasized that modern international practice provides for the cure of any edema for a patient with HAE. In Russia, so far, the practice is different – representatives of the medical community recommend people diagnosed with HAE to stop only life-threatening edema.
Ekaterina Viktorova, an allergologist and immunologist at the Dmitry Rogachev Scientific Research Center for Cardiovascular Surgery (Moscow), was the major speaker of the second part of the webinar. The doctor presented “Prospects of HAE therapy” and outlined promising therapies available to HAE patients in the near future. The speaker also detailed the methods and results of international trials of two new medicines, Lanadelumab and Berotralstat.
In April, HAE Russia held an on-site workshop in St. Petersburg for patients with HAE from St. Petersburg and the Leningrad region. During the event, Dr. Angelika Milichkina, the chief physician of St. Petersburg Pasteur Research Institute of Epidemiology and Microbiology, outlined the institute’s potential and interaction principles between its medical community and patients with HAE. Dr. Elena Bobrikova (see above) introduced aspects of a multidisciplinary approach in HAE patients’ treatment. In addition, the speaker shared the specifics of the disease caused by the gender factor. Raisa Kuznetsova, an allergologist and immunologist from the St. Petersburg Pasteur Institute of Epidemiology and Microbiology, an infectious disease doctor and candidate of medical sciences, presented “The current approach and prospects in the treatment of HAE patients”. The second part of the workshop addressed the issue of the legal literacy of HAE patients. Lawyer Ilya Ushankov delivered a presentation “Patient Navigator: Violated Law” and led an interactive “What if…” game. This game enables to simulate different legal situations, gives an effective algorithm of actions, and advises on how a patient should act when he or she is denied a recipe, advanced therapy appointment, provision of medical documents, and other situations.
On 15 and 16 May, the fourth annual International Scientific and Practical Conference of HAE Russia was held in Moscow. The “Vector of the Future” event coincided with the global hae day :-) 2021. The conference attracted representatives of HAE Russia from different regions of the country, leading scientists and specialists of medical centers – allergologists-immunologists, geneticists, clinical psychologists and lawyers. The best experts from Russia, the USA and a number of European countries acted as speakers at the event. Unfortunately, due to the restrictions imposed by the COVID-19 pandemic, foreign experts could not come to Moscow but participated online. The conference was addressed by Michal Rutkowski (Warsaw, Poland), Vice President and Regional Patient Advocate of HAEi as well as PhD, Professor of Allergology and Clinical Immunology, Department of Internal Medicine and Hematology, University of Semmelweis, Director of the Hungarian Center for Angioedema Recommendations and Excellence, Dr. med. Henriette Farkas (Budapest, Hungary). Furthermore, Clinical Director of the US HAEA Angioedema Center, Head of Clinical Service and Director of Training Program of the Department of Rheumatology, Allergology and Immunology, University of California, Dr. Mark Riedl (San Diego, USA) spoke along with the best specialists from Russian medical centers.
The event offered several modular panel discussions. The participants addressed current approaches to the diagnosis and therapy of HAE, shared their experience with patients in Russia and abroad, and commented on the prospects for pharmacological and genetic research in treating angioedema. Moreover, the conference agenda included a children’s interactive art therapy session. On the first day of the conference, the Moscow Society presented a new animated film, “Tell me about HAE”, which was prepared for the youngest patients with HAE.
At the conference, I reminded the participants that on 16 May, we could celebrate the fifth anniversary of HAE Russia, and I thanked the members, doctors, lawyers, psychologists and the official sponsors of the event – the companies Takeda and Medipal – for supporting our activities. Over the years, HAE Russia representatives have repeatedly participated in Russian and international events, organized scientific and practical conferences, actions and flash mobs, webinars, schools of patients, social exhibitions. Owing to the support of HAE Russia, many patients now receive effective therapy. Significant progress has been made over the years, but more needs to be done. HAE Russia will continue to defend the rights of its members – patients with HAE.
