Registration of 3000 patients with CF in the Ministry of Health

Referring to the challenges of these patients in Iran, Mohammadreza Modaresi, the head of the CF Diseases Foundation, emphasized the need for more support and removing barriers to providing medicine and medical services.

He added: recessive hereditary diseases are of special importance due to the high prevalence of consanguineous marriages in Iran. So far, more than 3100 patients have been registered in the registry system of the Ministry of Health, but the actual number of patients is probably higher due to non-diagnosis or insufficient reporting.

Madrasi continued: These diseases, which are mainly progressive are, they need continuous treatment and access to special drugs. Many of the needed medicines are imported and their high cost, even with insurance coverage, puts a lot of pressure on families.

Referring to the insurance challenges, he said: One of the main problems of these patients is the need for repeated approval of the drugs by the insurance, which must be done monthly. This process has caused hardship to patients and their families and needs immediate correction.

He also mentioned the advances in treatment in recent years and said: In the past, more than 97% of patients died before reaching the age of 18. But due to scientific advances and access to better treatment, now more than 20% of patients reach adulthood.

The head of the CF Disease Foundation announced the importance of importing new drugs and stated: In advanced countries like America, the use of new drugs has increased the average life of these patients to more than 60 years. We are also trying to import these drugs and make them available to patients.

In the end, he emphasized the need to establish specialized treatment centers for these patients and added: To reduce the dispersion and problems of adult patients, special rooms have been created in Imam Khomeini Hospital and we hope that by removing the obstacles, better services will be provided to these patients.