site.btaBulgarian Patients Wait Two Years-Plus to Receive Drugs Treating Rare Diseases - Expert

It takes more than two years for an orphan drug, a pharmaceutical agent developed to treat certain rare medical conditions, to reach Bulgarian patients, Prof. Rumen Stefanov, Chair of the Institute for Rare Diseases, said during the First National Rare Diseases Expert Centers Symposium that took place here on Friday. The forum was dedicated to promoting to role of such centres in the Bulgarian healthcare system.

Currently, 265 rare diseases are included in the list of rare diseases in Bulgaria. A significant share of them had to wait from 2016 to 2022 to be included. Since 2022, there has been no major delay in the process of rare disease inclusion in the list, which is a huge progress, said Stefanov.

Bulgaria has 34 expert centres for rare diseases that perform diagnosis, treatment, and follow-up of patients in Sofia, Plovdiv, Varna, and Pleven.

Some 36 million people are affected by between 6,000 and 8,000 rare diseases in the EU, said Deputy Health Minister Dobromira Kareva. She reported that diagnosing and treating patients with rare diseases remains a relevant challenge. Despite significant progress in diagnosis, there are complex challenges that require in-depth discussion, she added.

The goal of the Symposium is to have representatives of the Health Ministry, the National Health Insurance Fund (NHIF), the National Health Information System, and patient organizations discuss measures to improve the operations of the expert centres.