From Chairman Elena Bezbozhnaya, HAE Russia
During the challenging time of the COVID-19 pandemic, HAE Russia keeps in touch with patients and supports its members through all available means. In the fall, we have ensured several important events, both online and offline.
In early September, when the coronavirus rate slowed down, the School of Patients with HAE held a face-to-face session for residents of Moscow and the Moscow region in the Radisson-Slavyanskaya Hotel conference hall. The discussion covered new clinical guidelines for patients with HAE and vaccination issues:
- I revealed new trends in therapy and prevention of HAE, reviewed prolongation medications that are currently under clinical trials, and addressed the difficulties faced by patients with HAE
- Ilya Ushankov, lawyer of HAE Russia, PhD, presented patient routing “Legal status of patients with HAE” and performed a training business game with the participants, simulating the situation of an HAE patient interacting with doctors
- Tatiana Latysheva, Doctor of Medical Sciences, Professor, Head of the Department of Immunopathology of the Federal State Budgetary Institution SSC Institute of Immunology of the Federal Medical and Biological Agency of Russia, observed changes in clinical guidelines for HAE treatment and prevention
- Andrey Prodeus, Doctor of Medical Sciences, Professor, Head of the Department of Pediatrics at the Moscow Faculty of the Russian State Medical University named after N.I. Pirogov focused on the current spread of coronavirus infection in Russia and the world, answered questions regarding vaccination as patients with HAE can get vaccinated against seasonal influenza and COVID-19 according to the national vaccination calendar.
On 19 September 2020, HAE Russia conducted an online school, which brought together members from Russia and representatives of patient organizations from Ukraine and Belarus.
I presented an electronic model of an HAE patient’s passport developed by the Institute of Immunology of Russia. Ilya Ushankov, lawyer, informed about the main legal documents that can guide patients in establishing a diagnosis, entering data into the federal register, passing the medical commission, prescribing treatment and medical provision. Then, Ekaterina Viktorova, allergist and immunologist of Dmitry Rogachev National Research Center of Pediatric Hematology, Oncology and Immunology of the Ministry of Health of the Russian Federation, discussed the situation with COVID-19 in the world and Russia, and the impact of the virus on people suffering from various diseases. The doctor pointed out no data available on the increase in severity or number of cases among patients with HAE, but COVID-19, like any other infection, may become a trigger for swelling. Irina Manto, allergist and immunologist of the Federal State Budgetary Institution SSC Institute of Immunology of the Federal Medical and Biological Agency of Russia, introduced all the medicines currently available for the treatment of HAE in Russia, noting the specifics of their use by women. The doctor also emphasized the pregnancy issue for women diagnosed with HAE.
The event included a new animated video featuring all stages of routing of patients with HAE. In addition, the video gave recommendations to patients with a confirmed HAE diagnosis regarding preferential medical provision.
On 6 November 2020, HAE Russia provided a webinar for patients from different regions of Russia. The discussion brought up routing standards, medical provision, rights and obligations of doctors and patients. The webinar gathered many new members of the organization, so I started my speech with the forms of work of HAE Russia, referring to the three major areas of our activities: Information, psychological and legal support. Also, I informed the participants on the results of the survey conducted in 2020 among members of the organization:
The study revealed fatal cases of HAE-related attacks in the history of one in three families with HAE patients. Seventy-five percent of the interrogated stated having laryngeal edema. Most patients, particularly 65 percent, do not feel protected in everyday life. First of all, they associate such situation with insufficient knowledge of doctors about the course and the specifics of the disease. Eighty-one percent of respondents noted the extremely low level of awareness about the disease in Russia. Thirty-two percent consider the negative impact of HAE diagnosis on educational opportunities, while 49 percent of patients reported on the negative influence of the disease on their professional activity. Sixty-one percent of respondents believe that the condition limits their daily and travel activity. As for the HAE issues to be addressed first, 93 percent of respondents expected new up-to-date medicines to be registered in Russia and made available. Besides, 70 percent of respondents suggested that the level of diagnostics should be improved.
Legal adviser Ilya Ushankov reported on providing legal assistance to patients, including the judicial practise of protecting the interests of HAE Russia members, and introduced the mechanism for obtaining the required medications.
Doctor of Medical Sciences, Professor, head of the Department of Immunopathology of the Federal State Budgetary Institution SSC Institute of Immunology of the Federal Medical and Biological Agency of Russia, Tatiana Latysheva devoted her speech to the nature of the disease, symptoms and the course of HAE. Dr Latysheva covered in detail abdominal attacks and long-term preventive measures. She noted that 30 percent of HAE patients in the Russian regions do not have access to the latest medications, and 43 percent of patients do not receive long-term preventive care for various reasons.
During the meeting, patients with HAE could share their concerns with the speakers and get qualified answers from the experts.
During the autumn of 2020 HAE Russia has continued to provide legal assistance to members who do not receive effective medicines. We ensured support for such patients in court proceedings, drawing public attention to the current issues and publishing articles on the subject in the federal and regional media.