On the occasion of the International Day of Rare Diseases, the Association for Cystic Fibrosis in Bosnia and Herzegovina presented a certificate of appreciation to the Center for Investigative Reporting (CIN) for their story titled “The Fight with Bureaucrats for Children’s Lives.
The Association expressed gratitude for the significant support, compassion, and empathy shown by CIN towards people with cystic fibrosis and highlighted the crucial role of media in their advocacy for patient rights.
Editor-in-chief Aladin Abdagić received the appreciation on behalf of CIN and stated that he was pleased if CIN’s stories contributed to helping children in critical need of medicine. He added that this aligned with the mission of the entire editorial team.
The story’s author, Sadeta Bajrović, also received recognition for her work. She expressed hope that institutions would guarantee patients’ rights and increase efforts to raise awareness of children suffering from rare diseases in the future.
In a report from June 2021, the story highlighted children with cystic fibrosis waiting for six months for approval of their expensive medication from the Health Insurance Institute of the Una-Sana Canton. Parents shared with CIN that they annually endure waits of at least a month or two for the necessary medicines their children need to take regularly.
Association President Elvira Muhić stated that the Una-Sana Canton Health Insurance Institute only approved the medications after CIN journalists began investigating the issue.
