Funding for the treatment of children with rare diseases up to age 18 by the MoH, and over age 18 by the NHIF.

Funding for the treatment of children with rare diseases should be covered via a transfer from the Ministry of Health (MoH), while the treatment of individuals over 18 should be covered by the NHIF. This was proposed by the Supervisory Board of the Fund, according to the transcript of its meeting on November 21.

The representative of the BIA, Prof. Grigor Dimitrov, recalls that the treatment of rare diseases was traditionally funded by the MoH, but subsequently—as with oncology and hemodialysis—the costs were transferred to the NHIF without providing the necessary resources. “Currently, the NHIF is implementing social policy. We ask how long this practice will continue, given that it is not regulated by law,” he commented.

The Deputy Governor of the Fund, Prof. Momchil Mavrov, specifies that regardless of the chosen model, payments must pass through the NHIF—either through health insurance contributions or through a transfer from the MoH for pediatric cases.

“The transition of rare diseases and oncology to the NHIF was a political decision. The new ICD codifiers include severe and disabling diseases for which treatment is extremely expensive,” states the KRIB representative, Dr. Evgeni Tasovski. According to him, the real costs will begin after 2026 if the National Council on Prices and Reimbursement approves the medications. He emphasizes that the question of whether the NHIF should cover these diseases must again be decided at a political level.

The CITUB representative, Dr. Ivan Kokalov, proposes that the MoH develop a mechanism to cover medications for rare diseases, as is the practice in several European countries where specialized funds operate. The representative of patient organizations, Atty. Plamen Taushanov, insists on clearly formulating that funding for children will come from the MoH, and for patients over 18, from the NHIF.

The meeting also discussed the expected deficit in the revenue part of the NHIF budget for 2025. The proposal is that the shortfall of nearly 23 million BGN, due to uncollected health insurance contributions, be compensated through funds remaining in the paragraphs for primary outpatient medical care, specialized outpatient medical care, and pharmacy fees. “We propose that no advance payments be made this year to ensure balance in the 2025 budget,” states Ganka Avramova, Director of the Budget and Financial Parameters Directorate.

The Supervisory Board decided that at the next meeting, the NRA should provide written information on the implementation of revenues for the NHIF budget and discuss possibilities for avoiding internal compensatory changes. The meeting planned for today was postponed until next week.