From President Elena Bezbozhnaya, HAE Russia
Over the past six months, HAE Russia has hosted various highlights, face-to-face meetings, and online webinars, with adults and children involved from all over the country.
Over the summer, we invited members living in the Moscow region to a webinar on “Long-Term Prevention and Screening of HAE Patients in Moscow”. The webinar was interactive, enabling HAE patients to discuss their concerns with the speakers, focusing on short-term and long-term prevention issues. Another webinar addressed the effectiveness of HAE preventive and therapeutic treatments prescribed to patients.
Since 2021, many Russian patients have started to receive biosimilar pathogenic drugs. Unfortunately, the experience revealed that analogue drugs do not always have the same effect as the original drugs. Therefore, at the end of the summer, we hosted the webinar “Drugs: Myths and Truth.” Doctors and lawyers presented participants with procedures for dealing with cases where the prescribed medications prove to be ineffective or cause negative adverse reactions.
Furthermore, in August, we organized a webinar titled “Litigation. What You Need to Know”, aimed at patients who need to pursue court-ordered medications.
In mid-September, representatives of HAE Russia had a consultative meeting with the leadership of the federal “Circle of Kindness” Foundation and signed an Agreement on Cooperation. Since the beginning of 2021 “Circle of Kindness” has been engaged in supporting children with severe life-threatening and orphan diseases. Last October the Expert Council of the Foundation added HAE to the list of diseases curated by the Foundation, taking responsibility for providing juvenile patients with HAE with modern pathogenetic medicines. Now more than 20 juvenile patients are under the care of the Foundation.
On 24 September 2022 in Moscow we conducted the All-Russian School of HAE patients, the largest annual event, to discuss the most urgent and relevant issues. The participants traditionally exchange the latest information, news in the medical and legal fields, talk about their concerns and share their personal experiences. This time the conference was held under the motto “Life without fear”. HAE patients from all over the country – from Moscow and St. Petersburg, the Far East, Kamchatka Krai and other regions of Russia – participated in the school’s activities. Many of them came for the first time as families, with children, who have also been diagnosed with HAE. The speakers at the event represented the best experts and specialists of the largest medical centers, psychologists, lawyers, and members of public organizations. Opening the School, I presented the projects implemented by HAE Russia and noted that now our organization has about 300 members. Today, the Russian Federal Register contains data on 622 patients with HAE (including 93 children).
Within the conference, the experts discussed the practice of Russian patients’ use of Lanadelumab, a new long-term preventive agent registered in Russia in 2021. Also, they shared their experience regarding modern methods of detection and diagnosis, and treatment guidelines for the disease. The conference resulted in the definition of future objectives for HAE Russia, namely: improving the level of detection and diagnosis of HAE, implementing screening projects; introduction of educational programs to inform the medical community about the existence of HAE and its symptoms; promotion of the multidisciplinary approach to the treatment and medical support of patients with HAE.
Given that more than 20 children and adolescents (diagnosed with HAE) from 4 to 17 years attended the School for the first time, the organizers developed a special program for them, which included psychological games, film training, discussions, creative master classes, and even a legal interactive. Moreover, during the conference the young participants decided to form the HAE Russian Youth Community.
Throughout 2022, HAE Russia continued the “Call a Friend” project for children and adolescents diagnosed with HAE. At the online meetings, facilitators introduce underage patients to relaxation and stress reduction techniques, teach them how to deal with their own feelings, hold creative master classes, psychological games, and help teenagers decide on their future profession.
In October and November, we held several traveling HAE Patient Schools for residents of the Moscow region, St. Petersburg, and Nizhny Novgorod. In addition, patients from different federal districts of Russia were offered a series of online webinars focused on the creation and development of a multidisciplinary approach in the country’s regions. Regional medical experts who specialize in treating comorbidities in patients with orphan diseases were invited to contribute to the discussion. This issue appears to be one of the most pressing, since not all medical institutions understand the specifics of treatment, premedication and preparation for all kinds of medical manipulations that people diagnosed with HAE need (including dental, surgical procedures, pregnancy support and safe delivery for patients with HAE). We aim at developing a multidisciplinary approach to treating patients with HAE at the regional medical centers.
