Experiences and opinions of cystic fibrosis patients and their families about their inability to access modulator treatments in Turkey: a qualitative study

ABSTRACT
Modulator drugs cannot be provided regularly to our patients because they are not reimbursed by the Ministry of Health in Turkey. Patients can access these drugs on a limited basis and with detrimental intervals after a series of legal processes. This study aimed to qualitatively investigate both the clinical effect of intermittent modulator therapy on patients, the difficulties in accessing the drugs, and opinions about the process.
Our research was designed as qualitative. It included patients over the age of 18 diagnosed with cystic fibrosis who had access to modulator treatments through legal processes, who may or may not currently use the drugs, and caregivers of patients under the age of 18. A total of 3 patients, 5 caregivers and one attorney has been interviewed.
Four themes have emerged from the analyses of patient interviews: before and after the modulator, receiving information about modulators, difficulties in obtaining the drug and hoping for a permanent solution. To the best of our knowledge, our country is the only place where they are obtained through legal processes on a semi-regular basis. This is detrimental for patient well-being and must be addressed immediately.