The CEO of the Rare Diseases Foundation in Iran has highlighted critical challenges in ensuring timely access to medicine for patients with rare diseases. Speaking to ILNA news agency on Friday, January 17, Hamidreza Edraki stressed the need for uninterrupted drug supply, pointing to significant delays caused by customs clearance issues that sometimes render imported medicines unusable due to expiration.
Edraki explained that domestic pharmaceutical companies in Iran do not produce medications for rare diseases due to cost constraints. Consequently, the country relies heavily on imports, which are further complicated by the need to secure foreign currency for procurement. He emphasized, “Pharmaceutical agencies must ensure the quick importation of these drugs, and once imported, they should not remain in customs, where delays can lead to expired medicines.”
He cited a specific instance involving dressings for Epidermolysis bullosa (EB) patients. Despite the initial success of securing these essential supplies, delays in customs clearance hindered their timely distribution. Such logistical challenges underscore systemic inefficiencies in Iran’s drug procurement and distribution mechanisms, which successive governments have failed to resolve despite repeated promises.
A Broader Crisis in Medicine Availability
The broader issue of medicine shortages in Iran remains a pressing concern. On January 7, Salman Eshaghi, spokesperson for the Parliament’s Health and Medical Commission, urged authorities to address the problem transparently, criticizing efforts to obscure the severity of the situation.
Edraki also provided updates on the prevalence of rare diseases in Iran, noting the identification of five new conditions, bringing the total to 449 recognized rare diseases. These newly documented conditions primarily involve genetic disorders affecting the brain, spinal cord, and peripheral nerves, resulting in disabilities such as impaired motor function.
Currently, nearly 6,500 individuals with rare diseases are registered with the foundation. However, Edraki believes the actual number is significantly higher, as many patients remain undiagnosed or unaware of their condition. Limited access to diagnostic services further exacerbates this gap.
Addressing the Root Causes
In his interview, Edraki, a radiology specialist, identified consanguineous marriages as the leading cause of rare diseases in Iran. He called for greater emphasis on genetic counseling to mitigate this issue. Advanced maternal age—between 35 and 40 years—was also cited as a contributing factor. Additionally, environmental factors such as air pollution, exposure to X-rays, and smoking pose significant risks to pregnant women, potentially increasing the prevalence of rare diseases.
A Call for Comprehensive Reform
The challenges outlined by Edraki reveal a dire need for systemic reforms in Iran’s healthcare and drug supply systems. Ensuring timely access to medication, raising awareness about rare diseases, and addressing their root causes through preventive measures like genetic counseling are crucial steps to alleviate the burden on affected individuals and their families. Without decisive action, patients with rare diseases will continue to suffer from preventable obstacles to care.
