Experts: in St. Petersburg it is necessary to develop hospital-replacing technologies for people with rare diseases

The situation with covid has exacerbated and brought to the fore the issues of helping people remotely, so one of the most important issues was the possibility of developing hospital-replacing technologies and telemedicine in St. Petersburg. First of all, it concerns patients with various nosologies who are in a catastrophic situation, said the participants of the round table dedicated to the International Day of Rare Diseases.

In particular, Dmitry Chistyakov, President of the Hemophilia Patients of St. Petersburg Charitable Public Organization for the Disabled, recalled that until 2014 there were various specialized ambulance teams in the city, in particular, ambulance teams with resuscitation and hematology profile.

In accordance with federal legislation, these teams were reprofiled, and the functions of administration of drugs at home were transferred to ordinary ambulances.

“Unfortunately, despite the letter from the Ministry of Health of 2018, explaining the procedure for administering drugs, in particular to patients with hemophilia, the ambulance service, referring to internal instructions, sabotages the implementation and takes patients to the hospital even with rather mild exacerbations,” Dmitry described the current situation in St. Petersburg and added that the existence of visiting advisory services and the transfer of part of medical procedures from the hospital to the home is also relevant for other nosologies.

Maria Shekunova, coordinator of the SMA Families Charitable Foundation for St. Petersburg and the Leningrad Region, also drew attention to the problem of an insufficient number of equipment and consumables for home ventilation. On May 31, 2019, Order No. 348 approved a list of medical devices intended to support the functions of organs and systems of the human body provided for use at home. Other regions provide their residents exactly according to this order, but in St. Petersburg, patients are not provided with everything necessary, although they have every right to do so, consumables are not purchased in full and are issued without taking into account the individual needs of patients.

The annual World Rare Disease Day is celebrated around the world on February 28th. In St. Petersburg, round tables dedicated to this date have been held since 2013 at the initiative of GAOORDI. Vice-Governor of St. Petersburg Oleg Ergashev, heads of city committees responsible for social policy and health care, representatives of the legislature, members of the Public Chamber, leading specialists of medical and social institutions took part in a recent round table discussion of the problems of patients with rare (orphan) diseases , as well as leaders of NGOs that unite families with patients with rare diseases.

Vice Governor Oleg Ergashev said that all proposals collected at the end of the round table would be carefully considered, and the heads of relevant committees would receive appropriate instructions for their implementation.