When the previous Program for Rare Diseases, which was valid for the period from 2020 to 2022, expired, it was announced that a new one would be drawn up for 2023. This was not done, the Ministry of Health did not explain why in its response.
In an answer to "Vreme", Assistant Minister of Health Slađana Đukić stated that the new Program for Rare Diseases, which would refer to the period 2023-2025. is working intensively and is expected to be adopted during this year.
"We note that several institutions are participating in the work, because it is a complex area that does not only refer to the health system, although it is primary (that is why we are the ones carrying the work)", Đukić states in the answer.
As the president of the National Organization for Rare Diseases of Serbia, Olivera Jovović, previously explained to "Vreme", the Program is necessary in order to determine the Strategy for Rare Diseases, which would include all necessary ministries.
"When everything is under the auspices of one ministry, it is inconvenient to include everything else that is needed for rare diseases. Health care is provided, and we should also work on social protection and care for the family itself, because somewhere I think that it is most needed by those suffering from rare diseases", indicates our interlocutor.
The announced Program will now obviously cover the past year as well, as if the doctor and holder of the list "We, the voice of the people" Branimir Nestorović, who believes in traveling through time, wondered.
However, it is not disputed that progress has been made in the treatment of patients with rare diseases even without the adopted Program. "Time" and it said. It remains an open question why the Program has not been adopted so far, and especially how, once it is adopted, it will be applied to the year that is behind us.
Analysis of the previous program
At the end of 2022, it was supposed to be done and ex post analysis of the program, and during the duration of the previous program, and Reports on the implementation of the Action Plan.
In mid-March of last year, in a response to Vreme, the Ministry of Health stated: "We emphasize that in the coming period, the Ministry of Health will prepare a detailed report on the implementation of the Action Plan, as well as ex post analysis, on the basis of which the new Program will be made".
Then, as well as now, in their response, they state that a large number of activities foreseen in the Action Plan have been implemented.
They indicate that it is the introduction of the definition of rare diseases into legal regulations; development of software for registration of rare diseases; list of existing laboratories dealing with the diagnosis of rare diseases; formation of a body that will monitor and coordinate the implementation of the National Program for Rare Diseases; creating a section of the M3 site for rare diseases that will enable the use of OrphaNet Serbia; preparation and implementation of a survey for persons suffering from rare diseases; amendment of the act defining and establishing centers for rare diseases; analysis of the needs for expansion of the Center for certain types of rare diseases.
This was also stated in the previous answer for "Vreme", while the Report on the implementation of the Action Plan had not yet been prepared, as well as ex post analysis. The answer now does not indicate whether these documents have been produced.
The Ministry further states that the activities that were not implemented or were not fully implemented during the validity of the Program (2020-2022) will be foreseen by the new Program for Rare Diseases and indicate that it should be borne in mind that the period of application of this Program coincided with the period of the pandemic and that it evidently affected the implementation of the activities foreseen in the action plan.
