From Chairman Elena Bezbozhnaya, HAE Russia
Under quarantine, providing support for patients with HAE takes on special significance. HAE Russia launched a new online project for children and held several remote meetings for members for the patients to receive medical and legal advice.
Call a friend: In March, we launched a new psycho-emotional support project for the youngest members of the organization. The online project “Call a Friend” was developed for juvenile patients diagnosed with HAE. The participants are children of three age groups: 5 to 8 years old; 9 to 12 years old; 13 to 18 years old. In mid-March, the first lesson gathered a younger age group. Through the web platform, children from different regions of the country were able to communicate live with the psychologist and with each other. The children told about themselves, what they are interested in. At the first lesson, children learned to recognize and understand what feelings people around us experience. At the following meetings with the psychologist, young participants will learn to control negative emotions. Since increased anxiety can trigger an attack, children diagnosed with HAE should avoid stressful situations. According to the comments of their parents, who watched the first online session, all the young participants were very pleased with the new experience and are already wondering when the next meeting will be held.
Webinars on medication: In early April, we held two webinars on “Medication for HAE patients in the pandemic”. The online meetings engaged patients with HAE from Moscow, Siberia, Crimea, the North Caucasus as well as other regions of Russia. Hosted by myself and lawyer Ilya Ushankov the discussion focused on violation of patients’ rights to preferential medicines and health care under quarantine. The lawyer shared with patients the possibility of remote medicine prescription. Due to the pandemic, the Ministry of Health of the Russian Federation in March 2020 issued an order granting patients with chronic diseases the right to receive prescriptions remotely, for a period of three to six months, without in-patient visits to doctors. We also discussed various violations of patients’ rights with the participants.
Webinar on the pandemic: 24 April 2020 we held a webinar titled “The Pandemic: Treatment is a right, not a privilege” with Natalia Kuzmenko, allergist and immunologist, and once more Ilya Ushankov as the main speakers of the meeting. Since we suggested that the webinar participants send questions in advance, the speakers arranged their speeches based on these requests. Natalia Kuzmenko addressed the specifics of the disease course, prevention and treatment methods. The doctor paid special attention to the frequency of use and dosage of drugs, the possible impact on the hormonal background, reception patterns and side effects arising from the use of certain drugs. The second part of the webinar considered legal issues. Ilya Ushankov presented a list of legal documents confirming the right of patients with HAE to receive effective drug therapy.
Webinar on expert opinion: 8 May 2020 we held a webinar titled “Expert Opinion”. This online meeting discussed draft new clinical guidelines providing medical care to patients with HAE. As the event-speaker, Elena Latysheva, Doctor of Medical Sciences, submitted draft clinical recommendations and new approaches to treatment, emergency care and diagnosis of the disease. New standards of therapy and diagnostics were created based on the experience gained, the emergence of effective drugs, current methods of treatment and prevention. In the final part of the meeting, the speakers answered the questions most related to the issues of preferential provision of medicines.
Given the restrictions on the spread of coronavirus infection, HAE Russia continues to protect patients’ rights and provide them with legal, social and psychological support.
