TEHRAN – Over three million patients identified with more than 130 rare and hard-to-treat diseases are covered by Salamat Health Insurance Organization.

A rare disease is often described as a specific health condition affecting 1 in 2000 individuals or fewer in the general population. Over 7000 known rare diseases currently impact more than 300 million people globally, with 70 percent of these conditions starting in childhood.

Salamat Health Insurance Organization, in cooperation with the Ministry of Health, established the Rare Disease Foundation in the Iranian year 1401 (March 2022 to March 2023). Back then, nine rare and hard-to-treat diseases were identified. The foundation covers rare and hard-to-treat diseases to promote health equity and support patients financially, IRNA quoted Mohammad-Esmael Kameli, an official with the health insurance organization, as saying.

Before the establishment of the foundation, patients suffering from Thalassemia, hemophilia, kidney failure, Hemodialysis were supported. Diseases such as ‘butterfly skin or EB’, ‘Spinal muscular atrophy (SMA)’, ‘Metabolic diseases’, ‘Autism’, and ‘Dystrophies’, Diabetes, cancer, and immune deficiency diseases are among rare diseases. 

The budget allocated to rare and hard-to-treat diseases has increased over the past few years, rising from 50 trillion rials (about 33 million dollars) in the first year to 120 trillion rials (about 80 million dollars) this year.

According to the World Health Organization (WHO), rare diseases are often complex and multi-systemic, affecting multiple organs and leading to comorbidities, and many of these conditions are chronic, progressive, and can consequently result in serious disabilities and premature death.

Out of a thousand population, 2 people get a rare disease, while the prevalence can be curbed by changing people’s culture, screening, identifying, preventing births, and raising awareness.

Health insurance services

In 2024, seven more anti-cancer drugs were added to the list of rare diseases fund, with health insurance covering 70 percent of the costs.

“Currently, with the inclusion of these seven drugs, a total of 90 anti-cancer drugs are covered by the rare and hard-to-treat diseases fund, and the health insurance is paying 70 to 95  percent of their costs,” IRIB quoted Kameli, an official with the health insurance organization, as saying.

The number of health centers that have concluded contracts with the Health Insurance Organization increased by seven percent in the past Iranian calendar year (ended on March 19) compared with the year before.

More than 53,000 centers have concluded contracts with health insurance organizations so far in the current year, IRNA quoted Keivan Tajbakhsh, an official with the Organization, as saying.

Health insurance contracts have been signed with government, non-government, private, and charity centers for services.

The centers include doctors’ offices, hospitals, pharmacies, rehabilitation centers, and all medical centers.

“We hope to witness an increase in the number of health centers that are parties to the contract with Health Insurance Organization as new forms of the contract, approved by the Supreme Council of Insurance, are announced,” Tajbakhsh said.

He stated that 13,931 pharmacies, 20,804 doctors’ offices, 2,049 clinics, 2,446 independent laboratories, and 4261 rehabilitation centers, both independent and affiliated with other organizations, have concluded contracts with the Health Insurance Organization.

MT/MG