Examining of Health Policy in Rare Diseases in Terms of Historical Perspective in Turkey

Abstract

Compared with other common diseases in the general population, a rare disease is a health condition that affects a small number of people. The progressive, life-threatening and multi-dimensional nature of these diseases requires the development of an effective health policy. The aim of this study is to examine health policy for rare diseases from a historical point of view in Turkey. Public Health Law No. 1593 provides the basis for policies developed in the field of rare diseases. In the early 2000s, genetic screening programs have been launched (neonatal metabolic and endocrine disease, inherited blood diseases, biotinidase deficiency, phenylketonuria, congenital hypothyroidism, adrenal hyperplasia, cystic fibrosis, etc.). Since 2007, Turkey has been a member of Orphanet. The Draft Guide to Orphan Drugs was published by the Ministry of Health in 2009. Since 2014, the public authorities, universities, and NGOs have been particularly interested in rare diseases. The civil society initiative 'Rare Diseases Network' was established in 2018 under the leadership of patients and their families. Some reports on rare diseases were published by TÜHKE and the TAÇESE in 2019. The Parliamentary Investigation Commission has been set up to determine the situation of some rare diseases. The Rare Diseases Department was established within the Ministry of Health in 2020. It is recommended that the National Action Plan on Rare Diseases and Orphan Drugs should be implemented to develop policies, in particular access to healthcare services, and provide economic and psychosocial support.