The program for rare diseases was adopted in the period between 2020 and 2022 in Serbia for the purpose of improving health care and the quality of life of people suffering from rare diseases.
However, the Program for 2023 was not completed, although it was announced that it would be.
The president of the National Organization for Rare Diseases of Serbia (NORBS), Olivera Jovović, told Vreme that patient representatives had meetings with the Ministry of Health at the beginning of last year, but that they were not included in the public discussion or in the actual development of the Program, which was the case with the previous one.
Although the Program was not adopted, it continues to care for patients with rare diseases.
He explains, however, that the Program as such should exist in order to determine the Strategy for Rare Diseases Action Plan that would accompany it.
When asked why the Program for Rare Diseases was not developed in 2023 and whether it will be developed, Ministry of Health it didn't answer.
A strategic document is necessary
Olivera Jovović states that they are advocating that the Program grow into a Strategy because that would mean that all the necessary ministries are involved.
"When it is under the auspices of one ministry, it is inconvenient to include everything else that is needed for rare diseases. Health care is provided, but we need to work on social protection and care for the family itself, because somewhere I think that it is most needed by people suffering from rare diseases", indicated our interlocutor.
On its Instagram account, NORBS wrote that in the past year without this Program, challenges have arisen in caring for people with rare diseases.
"We appeal to the urgent need for the creation and adoption of a new strategic document that will continue to support and protect the rights of all those suffering from rare diseases," states the NORBS announcement.
Previous Program
The previous Program for Rare Diseases predicted that the Ministry of Health would annually prepare a Report on the implementation of the Action Plan for the implementation of the Program, and that in the last year of this program, it would prepare ex post analysis.
We did not receive an answer to the question of whether this was done. In the middle of March last year, the Ministry of Health answered the same question that in the following period it will prepare a detailed report as well ex post analysis, on the basis of which they should have created a new Program.
Jovović states that they did not receive such a document, but that NORBS did an analysis of the previous Program, and that a lot was done.
"We mustn't forget the fact that that program was valid during the covid pandemic and that many things were delayed because of that," she points out.
He further explains that NORBS believes that the Strategy should be discussed now, given that only five percent of patients suffering from rare diseases have registered therapy, while the rest only have support in the form of social protection, in general, medical and technical aids.
Progress in the treatment of patients
For the treatment of patients suffering from rare diseases, the rebalancing of the budget for the year 2024 foresees 7,2 billion dinars, which is 2,9 billion more than the previous year, when 4,3 billion dinars were foreseen.
Olivera Jovović states that to the 7,2 billion dinars, allocations for the list of necessary medicines are added, so that 18 billion dinars are essentially allocated for rare diseases.
He further points out that four neonatal screenings are currently being conducted in Serbia, one of which is screening for spinal muscular atrophy (SMA).
Neonatal screening makes it possible to determine the presence of a certain disease in a child before the first symptoms appear.
"When it comes to SMA, we can say that we will no longer have the opportunity to look at SMA patients with any sign of the disease, because with screening and any of the three therapies, we have a healthy population," concludes our interlocutor.
Finally: "Is there room for improvement? Of course there is, but certainly the budget increase is something that has greatly helped those five percent of patients who have registered therapy".
