Dear Ms Aldijana Ahmetović,

Thank you for the letter.

In Estonia, most of the treatment of rare diseases is financed by the Estonian Health Insurance Fund, if the corresponding services and medicines are in the list of services and medicines financed by the Health Insurance Fund. The prerequisite for financing the treatment is the decision of the attending physician, in some cases the Health Insurance Fund price list also contains specifying or limiting conditions for the use of the medicine. The process of how new medicines and services are assessed in advance before being added to the aforementioned list is regulated by legislation.

Despite financial difficulties, 2-3 new medicines for rare diseases are added to the Health Insurance Fund list every year.

To a lesser extent, the treatment of rare diseases is also financed by charity, especially for those medicines and treatment methods that are novel and not yet reimbursable from public money (Health Insurance Fund).

In the last two years, a targeted allocation of 4-5 million euros has been allocated from the state budget to improve the availability of treatment for rare diseases, which supports the treatment of cases that are novel and not yet reimbursable by the Health Insurance Fund. This allocation also supports the provision of supportive services for patients and families, travel abroad for treatment, and other measures to support families. The money reaches families through charitable foundations that deal with rare diseases.

This additional allocation is still rather temporary in nature and the plan is to amend the law so that the process of evaluating innovative medicines and adding them to the Health Insurance Fund list would be more flexible and faster and would take into account the needs of this target group with rare diseases.

I hope that these explanations are helpful to you.

Best regards,

Dear Mr., Ms.,

The National Assembly of the Republic of Slovenia is preparing a comparative analysis of the treatment of rare diseases in various Member States of the European Union, including Estonia. Currently, as part of the legislative process, a broad discussion is underway in Slovenia regarding the creation of a special fund for the treatment of rare diseases, which would be intended for individuals with rare diseases.

That is why we are interested in how the treatment of rare diseases for individuals is carried out in Estonia, namely, who are the beneficiaries of receiving funds (patients, treatment providers, intermediaries) for treatment, to what extent the treatment of an individual patient is financed and how are the beneficiaries of the aforementioned funds determined? Are the funds for covering the treatment of rare diseases provided within the framework of health insurance funds or within other budget items? In addition to the above, we are interested in whether any initiative has been made in the past to establish a special fund for financing the treatment of rare diseases.

We thank you in advance for your answers, as they will be of great help to us in understanding in more detail the situation in Estonia.

Best regards,

Aldijana Ahmetović



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