Navigating Medicine Shortages: The Struggles Faced by Rare Disease Patients in Iran

The CEO of the Rare Diseases Foundation in Iran has underscored the pressing challenges surrounding access to medicine for patients with rare diseases. In a recent interview with ILNA news agency, Hamidreza Edraki highlighted the critical need for an uninterrupted drug supply, emphasizing that customs clearance issues often lead to significant delays, rendering imported medications unusable due to expiration.

Edraki elaborated that domestic pharmaceutical companies in Iran do not manufacture medications for rare diseases, primarily due to cost constraints. As a result, the country heavily depends on imports, which are complicated further by the necessity of securing foreign currency for procurement. He pointed out, “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.”

One notable instance he cited involved dressings intended for Epidermolysis bullosa (EB) patients. While there was initial success in securing these essential supplies, customs clearance delays hindered their timely distribution. This situation highlights the systemic inefficiencies within Iran’s drug procurement and distribution mechanisms, which have persisted despite repeated promises from successive governments to address them.

A Broader Crisis in Medicine Availability

The issue of medicine shortages in Iran remains a significant concern. On January 7, Salman Eshaghi, spokesperson for the Parliament’s Health and Medical Commission, called on authorities to address the problem transparently. He criticized the attempts to obscure the gravity of the situation.

In addition, Edraki provided insights into the prevalence of rare diseases in Iran. He reported the identification of five new conditions, bringing the total to 449 recognized rare diseases. These newly documented conditions mainly consist of genetic disorders affecting the brain, spinal cord, and peripheral nerves, leading to disabilities such as impaired motor function.

As of now, nearly 6,500 individuals with rare diseases are registered with the foundation. However, Edraki believes that the actual number is significantly higher, as many patients remain undiagnosed or unaware of their conditions. Limited access to diagnostic services exacerbates this issue.

Addressing the Root Causes

During the interview, Edraki, who is also a radiology specialist, identified consanguineous marriages as the primary cause of rare diseases in Iran. He advocated for a greater emphasis on genetic counseling to mitigate this issue. Advanced maternal age—between 35 and 40 years—was also mentioned as a contributing factor. Furthermore, 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 an urgent need for systemic reforms within Iran’s healthcare and drug supply systems. Key steps to alleviate the burden on affected individuals and their families include:

• Ensuring timely access to medication: Streamlining customs processes and reducing bureaucratic delays.
• Raising awareness about rare diseases: Educating the public and healthcare professionals on the symptoms and treatments.
• Addressing root causes: Implementing preventive measures, such as genetic counseling and public health initiatives.

Without decisive action, patients with rare diseases will continue to face preventable obstacles to care. The healthcare system must adapt to meet the needs of these vulnerable populations, ensuring they receive the support and treatment necessary for a better quality of life.

In conclusion, the situation surrounding the availability of medications for rare diseases in Iran highlights a critical need for reform. By addressing the systemic issues in drug procurement and distribution, promoting awareness, and focusing on prevention, the country can significantly improve the lives of those affected by rare diseases.