site.btaParliament Amends Health Act on Rare Diseases Treatment

Parliament adopted on Wednesday at first and second reading amendments to the Health Act related to the treatment of rare diseases. The bill, submitted by Continue the Change - Democratic Bulgaria (CC-DB) co-leader Kiril Petkov and a group of MPs was unanimously supported in both votes.

The amendments propose that the treatment of rare diseases with medicinal products and dietary foods for special medical purposes, which was started before the patient had turned 18, should continue to be paid for by the state budget after the patient's coming of age until the treatment is completed. According to the sponsors, this will guarantee access to treatment and ensure its continuity for these patients, regardless of their age.

Georgi Gyokov from BSP for Bulgaria said during the debate that insufficient knowledge of rare diseases is a prerequisite for delays in diagnosis and complications, and that there is a shortage of specialists and non-medical therapists with experience in this field. This leads to the risk of late-started or wrong treatment, he added. Gyokov insisted that these changes are imperative.

Andrey Chorbanov of There Is Such a People said that the vast majority of these diseases are genetic and lifelong. According to him, it is almost impossible for a person who suffers from such type of disease to get any improvement in their lifetime and that is why they need specific treatment. "I think this law is a good first step to cover the needs of this patient group," Chorbanov added.

Dimo Drenchev from Vazrazhdane called on the Health Ministry and those involved in drafting laws related to health care to change the Medicinal Products in Human Medicine Act so that especially medicines for rare diseases that are authorised for use in Bulgaria go through an easier procedure.