Rare disease treatment access in Serbia and Bosnia

Patients and families in Serbia and Bosnia and Herzegovina are advocating for increased access to life-saving therapies for rare genetic diseases.

In Serbia, the DMD Serbia Association has reported critical delays in accessing givinostat therapy for children with Duchenne muscular dystrophy (DMD). The association noted that approximately 65 children meeting medical criteria have yet to receive treatment, highlighting the recent deaths of two patients while waiting. Additionally, families of children with cystic fibrosis in Serbia are petitioning the Republic Fund for Health Insurance, noting that innovative therapies are currently available to only about 120 of the 400 patients in the country.

In Bosnia and Herzegovina, the Association for Duchenne Muscular Dystrophy has raised concerns regarding the lack of modern DMD treatments in the Federation of Bosnia and Herzegovina, despite such therapies being available in the US, the EU, and neighboring regions.

In a recent appeal, the Association, supported by Federal Delegate Dr. Fatima Gavrankapetanović-Smailbegović, urged authorities to secure access to Givinostat therapy. Currently, 15 boys in the Federation meet the specific medical indications for the treatment. Association President Mustafa Handžić stated that despite nine months of requests and initiatives sent to relevant institutions, there has been “no official confirmation” regarding when the therapy will be available. Following a media conference at the Federal Ministry of Health, the Ministry reported that inquiries have been sent to the Health Insurance and Reinsurance Institute regarding financial aspects. While parents have considered mass protests, the Association is currently seeking an institutional resolution.