Prof. dr Sanja Radojević Škodrić, Director of the National Health Insurance Fund: 2.4 Billion Dinars for the Treatment of Rare Diseases

Since 2012, the state budget allocations for the treatment of rare diseases have been growing year-on-year, which shows the state’s clear commitment to continue improving the treatment of patients with rare diseases

“In 2012, about 130 million dinars were allocated for the treatment of rare diseases, while in 2019, the allocations amounted to 2.15 billion dinars. The 2020 state budget stipulates that 2.4 billion dinars will be allocated for medicines for the treatment of rare diseases. I would like to underline that the National Health Insurance Fund (NHIF) Commission decides whether to approve the funding for patient’s therapy following the professional criteria provided by the medical records and available financial resources.”

In 2020, the budget for the treatment of rare diseases will amount to 2.4 billion dinars. How is this money going to be spent?

— Due to the steadily increasing budgetary allocations, the NHIF Commission has been able to approve the funding of the treatment of a number of patients and different rare diseases each year. Thus, from 2012 until now, the number of patients treated with budget funds has increased about 25 times (from 8 patients to close to 200 patients), while the number of rare diseases treated with budget funds has increased from 2 to 19 different which belong to the group of congenital metabolic diseases, rare tumours, hereditary angioedema, pulmonary arterial hypertension and spinal muscular atrophy, with annual medication per patient for treatment of certain rare diseases currently being treated in Serbia can cost up to several hundred thousand Euros each. The budget provides funding for particularly expensive medicines used in treating rare diseases, while medical and technical supplies are provided at the expense of the NHIF. The rights to medical and technical aids for patients with rare diseases are continuously expanded following the submitted requirements and the financial means available. Thus, last year the number of patches provided for patients with Dystrophic epidermolysis bullosa increased, and from this year on, a new type of bandage used in treating this disease has been secured. Pulmonary arterial hypertension patients are also entitled to use portable oxygen concentrators. The NHIF will continue its activities on promoting the right to medical and technical aids for patients with rare diseases, in line with the requirements and available financial resources. An important novelty is that the new Health Insurance Law prescribes the possibility of longer sick leave for parents of children with rare diseases that have resulted in severe damage to the brain structures or severe deterioration of the child’s health. In this case, sick leave is approved until the child is 18 years old, and the carers of such children will be paid a full monthly salary.


Amendments to the Ordinance on the list of medicines that are prescribed and issued at the expense of mandatory health insurance are under preparation. It was announced that innovative medicines would be incorporated into the Medicine List which costs are covered by health insurance all year around. What innovative medications will be included in this list?

— The continuous availability of innovative therapies for the treatment of various diseases has been recognized as a necessity which resulted in certain innovative medicines being incorporated into the Medicine List. As of 2016, 38 new original / innovative medicines have been added to the List, which are used in the latest and expensive therapies used in the most developed countries. In accordance with the therapeutic areas defined by the medical profession as a priority for making innovative therapies available (multiple sclerosis, lung cancer, hepatitis C, etc.), there have been lengthy negotiations with pharmaceutical companies in order of priority and a new Medicine List will include new innovative therapies for diseases that have not been available so far or mark a significant improvement in treatment.

What is the situation with innovative medicines in Serbia in relation to the region and the world?

— In recent decades, we have witnessed new medical developments that help us to better understand the mechanisms of the onset of disease, which has also led to the development of newer and more effective medicines. The primary goal of innovative therapies is for patients to have a more effective treatment, live a longer life and have a better quality of life, while on the other hand, the additional effect on the healthcare system and society is generally reflected in shorter hospitalizations, reduced length of sick leave, and prevention of early retirement. Over the last twenty years, with the development of biological medication and gene therapy, the costs of medication have increased dramatically and are continuing to grow, and there is a global challenge how to provide therapy, make it accessible to patients, and enable sustainable financing for health care. Countries that are economically much more advanced than us are also struggling with high medication prices, and this is not only a challenge in Serbia. For example, 20 years ago, the most expensive therapy was about $15,000, and today the most expensive therapy costs $2.1 million. Continuous provision of innovative therapy is our goal, and pharmaceutical companies are expected to do their best in creating the most favourable conditions through the conclusion of special contracts where part of the cost of medicines is borne by pharmaceutical companies, which is also a practice in other countries. Compared to other countries in the region, these countries probably have more medicines on their medicine lists, but unlike Serbia, they do not have stable functioning in terms of regular payment and therefore availability of medicines to patients. If we compare Serbia to other countries, we have to take into account locally-specific characteristics, such as whether that country is a memberof the European Union, what is the economic power of that country, which patient’s rights are financed by mandatory health insurance and what are payment deadlines. For instance, some countries include a certain medication into the Medicines List, but they do not have money for it, which forms waiting lists for that particular medicine, i.e. there are interruptions in the provision of therapy.

Did the NHIF’s call centre prove to be useful? How many calls did it handle and what were the most frequently asked questions?

— It’s been nearly a year since our Call Centre has been opened. Its services are available to almost 7 million insured persons in Serbia, making it the largest call centre in the region. By opening of this center, we made a huge step forward and have reformed the previous practice whereby the insured person had to go to solely to one of our branches to inquire. In addition to saving time, the pressure on the NHIF employees who work on counters has been reduced and queues have been shortened. The biggest number of calls to the Call Centre relates to health insurance issues and they account for about 75 percent of the total number of calls. Next are the calls regarding the right to use medical aids, the right to use sick leave (mostly pregnant women ask this), as well as questions regarding waiting lists.


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