From the HAE Russia Team:
In the summer of 2021, HAE Russia held several meetings with patients – both in-person and remotely. We assisted our members with legal issues and arranged consultations with physicians, psychologists, and lawyers while young patients with HAE attended another series of meetings under the “Call a Friend” project.
On 17 July 2021, HAE Russia hosted a webinar on issues regarding the process of receiving Lanadelumab, a long-term therapy. HAE patients enrolled in Takeda’s Early Access to Lanadelumab charity program described their personal experience participating in the project. All speakers noted that receiving the new medicine changed their lives dramatically so they could work, study, and travel. The HAE Russia Chairman Elena Bezbozhnaya introduced the statistics of the use of the new medicine to the members of the organization. Almost 70 percent of HAE patients – participants of the early access program – experienced no attacks for 12 months, and for 93 percent the number of attacks decreased by 70 percent. The overall average incidence of edema was reduced by 87.4 percent. Illya Ushankov, the Legal Advisor of the Federal State Budgetary Institution “Dmitry Rogachev Scientific Research Center of the Russian Academy of Medical Sciences”, Candidate of Law, Associate Professor of the Graduate School of Law at the Institute of Law and Public Administration under the President of the Russian Federation, focused on the procedure to receive Takhzyro.
On 24 and 25 July 2021, HAE Russia carried out another series of meetings for juvenile patients with HAE within the “Call a Friend” project. Online meetings gathered children and adolescents from different regions of Russia. The series started with a career guidance meeting for teenagers over 14 years old. Along with the leader – the head of the Moscow regional branch of HAE Russia, psychologist and HAE patient Yulia Faikova – the children examined their abilities, determined the prospects of various areas of study, and chose spheres of activity of their interest and safety to work in the future. Two Art-meetings were held for children with HAE of middle and younger age groups: 5 to 8 years old and 9 to 12 years old. The facilitator encouraged the children to share their emotions. The fragments of the favorite cartoon about Winnie-the-Pooh and his friends provided a perfect visual illustration for this discussion.
On 24 July 2021, Ulyanovsk hosted a full-time session of the “Future of HAE Therapy” Patient School. The event brought together HAE patients from Ulyanovsk and the Ulyanovsk region, Penza, and the Chuvash Republic. The school facilitated a forum to discuss the prospects of therapy and prevention of HAE, along with efficient modes of interaction between patients, the medical community, and health care authorities. Tatiana Latysheva, Head of the Immunopathology and Intensive Care Department of the Clinic of the Federal State Budgetary Institution “Institute of Immunology” of the Federal Medical and Biological Agency of Russia, allergologist-immunologist, honored doctor of Russia, professor of the Department of Clinical Allergology and Immunology of Moscow State Medical University, presented methods of basic therapy existing today in Russia and abroad. She also described promising and traditionally used treatment and prevention schemes for HAE. Dr. Alexander Cherdantsev, Chief Freelance Allergist-Immunologist of the Ulyanovsk Region, addressed vaccination issues while lawyer Ilya Ushankov delivered a presentation on legal support for patients diagnosed with HAE.
On 29 July 2021, HAE Russia offered a webinar on “Effective Health Care. Icatibant Generics.” Lawyer Ilya Ushankov presented “Medicine Safety. Patient Reporting of Side Effects”. He reported on how a patient should act in case a generic turned out to be ineffective and advised to report any complications to his physician and the Roszdravnadzor service. In the final section of the online meeting, participants could ask questions to Elena Bezbozhnaya.
On 14 August 2021, we held an online meeting, “The Future of HAE Therapy”, within the HAE Patient School. The webinar involved members of HAE Russia from Moscow, Kamchatka, the Far East, Siberia, and other regions of Russia. The discussion covered issues of drug supply for patients with HAE, advanced therapy, and prevention of the disease. The meeting proceeded as an interactive workshop. The participants could ask questions to the speakers, represented by Elena Bezbozhnaya, Professor Tatiana Latysheva, and lawyer Ilya Ushankov. The patients discussed the therapy methods used in different regions of Russia and shared their concerns regarding preferential drug provision. During the meeting, the participants touched on premedication before surgeries and examinations, when visiting the dentist, and giving birth. Many questions concerned the diagnosis, building the interaction with the attending physicians, basic and emergency therapy, and vaccination safety. The speakers provided patients with detailed answers to all these questions.
