Rare Oncological Diseases and Their Large Slice in Demands to the Brazilian Government for Health Technologies Over 12 Years Since the Creation of CONITEC: Doenças Oncológicas Raras e Sua Grande Parcela Nas Demandas Por Tecnologias em Saúde ao Governo Brasileiro ao Longo de Doze Anos Desde a Criação da CONITEC.

To describe the characteristics of the demands for health technologies submitted to the Brazilian Government. A descriptive analysis was carried out by surveying the reports produced by the National Committee for the Incorporation of Health Technologies since its creation in Brazil until 2023. The extracted data were tabulated in 3 domains: identification of demand, epidemiological profile of the disease, and clinical evidence and economic assessment. A total of 778 among 813 reports were included (95.7%), of which 266 (34.2%) were related to rare diseases. Of these, 86 (32.3%) were related to oncology, for 73.3% of which there were requests for the incorporation of medicines, 51.0% from external demand, 48.2% related to public entities, and 58.7% had the recommendation as a final opinion. The total and average incremental budgetary impact of the incorporated technologies was R$36 683 014 441.02 and R$1 111 606 498.20 and the total and average incremental cost-effectiveness ratio was R$1 024 897.50/QALY and R$68 326.50/QALY, whereas for nonincorporated technologies it was R$3 055 888 437.38; R$ 127 328 684.89; R$ 952 263.85/QALY and; R$52 903.54/QALY, respectively. The oncology area had greater representation among the demands evaluated, with rare cancers representing the largest portion of health technologies demanded, and the decision to incorporate was the majority. The incremental budgetary impact and incremental cost-effectiveness ratio were greater for the incorporated technologies, 2 among them exceeded the cost-effectiveness threshold adopted by the National Committee for the Incorporation of Health Technologies.