TEHRAN – According to the health ministry, about two million patients with rare and hard-to-treat diseases are covered by the Health Insurance Organization.

The Rare Disease Foundation also covers the patients, IRNA quoted Sajjad Razavi, an official with the health ministry, as saying.

The official made the remarks on the occasion of the national day of rare and hard-to-treat diseases observed annually on the 18th of Ordibehesht, the second Iranian calendar month, which falls on May 8.

The day is a good opportunity to rethink the health system’s responsibilities toward patients who need ongoing, multidimensional care and comprehensive support because of the complex, chronic, and mainly hard-to-treat nature of their diseases.  

To safeguard the patients’ health and lower financial burden on households, tens of specialized healthcare service packages have been defined for them, with some more being continuously developed. The packages include diagnostic, therapeutic, pharmaceutical, rehabilitation, and dental services, whether in the form of outpatient or inpatient services, which are provided with minimal deductibles or free of charge.

According to the health ministry, a total of 492 rare diseases have been identified in the country.

A rare disease is defined as an illness that affects less than 5 in 10,000 citizens, and is mainly of genetic origin, with 70 percent of these conditions starting in childhood.

Diseases such as ‘butterfly skin or EB’, ‘Spinal muscular atrophy (SMA)’, ‘Metabolic diseases’, ‘Autism’, ‘Inflammatory Bowel Disease (IBD)’, ‘Dystrophies’, Diabetes, cancer, ‘Mucopolysaccharidoses (MPS)’, and immune deficiency diseases are among rare diseases.

Despite lower prevalence, rare and hard-to-treat diseases are among the top health priorities due to difficulties in their diagnosis and treatment.

There are no cures for rare diseases, and patients with rare diseases need supportive care and rehabilitation services throughout their lives. Hence, the day highlights the need for coherent planning, the development of recurrent specialized services, genetic counselling, the expansion of insurance coverage, and social support.

Among rare diseases, cancers are the most expensive ones covered by the Rare Disease Foundation; 70 percent of the funds is allocated to cancer-related medicines. The rise in cancers highlights the need for the development of preventive programs, early detection, targeted screening, and fair access to health services.

Promoting health literacy, strengthening the referral system, and expanding preventive services are key factors to lower mortality among patients.

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 75 million dollars) this year.

International Rare Disease Day is observed each year on February 28 (or February 29 in leap years). The European Organisation for Rare Diseases was established the day in 2008 to raise awareness for unknown or overlooked illnesses.

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.

Rare Disease Day is a globally coordinated movement dedicated to rare diseases, striving for equity in social opportunities, healthcare, and access to diagnosis and therapies for people living with a rare disease.

The day aims to improve the lives of the 300 million people worldwide living with a rare disease.

This year’s theme, ‘More Than You Can Imagine,’ reminds us that rare diseases are far more common, complex, and impactful than many realise. While each individual condition may affect a small number of people, collectively rare diseases represent one of the most significant yet under-recognised public health challenges worldwide.

The World Health Organization’s (WHO) director for the Eastern Mediterranean Regional Office (EMRO) has said Iran is a leading country in expanding its healthcare system and providing access to universal health coverage.

Lauding the country’s achievements in recent years, Hanan Balkhi said expanding primary health care services, increasing access to health coverage in rural areas, maintaining high vaccination rates, and reducing maternal and newborn mortality, Iran has managed to become a successful role model in the region, the health ministry’s website reported.

The country’s commitment to providing equal health services to millions of refugees makes its services even more commendable, she stressed.

MT/MG