From Chairman Elena Bezbozhnaya
On 19-20 June 2019, HAE Russia held the International Scientific and Practical Conference “Strategy and tactics for treating patients with HAE. Life without fear”. Organized for the third time, this year the conference received the status of a major international event. The conference gathered highly experienced doctors and members of patient organizations from Belarus, Hungary, Kazakhstan, and Poland as well as patients diagnosed with HAE from 40 regions of the Russian Federation. The best specialists of metropolitan and regional medical centers: allergists, immunologists, genetics, heads of pediatric services, clinical psychologists, representatives of pharmacological companies, and lawyers interacted and shared their experience and knowledge. The conference focused on the routing of patients with HAE, access to essential medicines, correct diagnosis and treatment, disease control and prevention in Russia and abroad.
I opened the Conference, welcomed the participants of the event and turned to the HAE issue in Russia. I noted that many regions fail to supply HAE patients with preferential medicine, and most patients derive no health improvement without contemporary drugs or being provided in insufficient quantities: “We recognize a difficult situation for patients. People are often seeking legally prescribed drugs for themselves. Officials and many doctors seem to “forget” that the disease is lifethreatening, and serious irreversible consequences of inaction shall not be neglected or ignored. We look forward to the federal patient support program. We also promote the idea of creating a genetic screening program for children whose families have relatives with hereditary angioedema. HAE is a hereditary disease, so many families have several patients diagnosed with HAE. The sooner the disease is diagnosed and treated, the better the prognosis for a child, the better the outcome.”
I then invited the doctor of medical sciences, professor, corresponding member of the Russian Academy of Sciences, Director of the Medical Genetic Scientific Center, Head of the Department of Molecular and Cellular Genetics, Pirogov Russian National Research Medical University, chief freelance specialist in medical genetics of the Ministry of Health of the Russian Federation Sergey Kutsev. Mr Kutsev congratulated the participants with opening of the conference and addressed the meeting of the Committee on Health Protection of the State Duma of the Russian Federation on rare (orphan) diseases, which, in particular, covered preferential drug provision of patients from the list of 24 nosologies to be transferred from the regional level to the federal one to significantly simplify the process of obtaining pathogenetic drugs for patients with HAE.
The second day of the conference started with the modular block “Routing program as a possible mechanism for HAE patient and doctor interaction” and ended with an open discussion for all participants who got the chance to ask questions to doctors, lawyers and the management of the Society.
Within two days of the conference, young participants – patients with HAE – enjoyed a special program.
The psychologist Yuliya Faykova taught children to overcome anxiety states that can provoke edema, using psychological games and guidance.
Summing up the event, the Vice-President of HAE International Michal Rutkowski appreciated the high level of organization of the forum: “That was a highly interesting and informative conference complemented with focused thematic reports for patients, doctors, scientists, and lawyers. We discussed rather important and sensitive problems and focused on comprehensive solution strategies. We shared our own experience and opinions. The successful experience of one country can be relevant to other countries. Together we become stronger.”
Dmitry Rogachev National Medical Research Center Of Pediatric Hematology, Oncology and Immunology in Moscow, Russia has been added to the HAE world map – have a look at https://haei.org/location/care-centermoscow-russia.
