TEHRAN – A total of 250 trillion rials (around $943 million) has been proposed in the budget bill for the next year (starting March 21) to support and treat patients with hard-to-treat diseases, IRIB reported on Saturday.

For the first time in the budget bill, a fund has been set up to support patients with such diseases, Hamidreza Haji Babaei, chairman of the planning and budget committee of the parliament (Majlis), said.

Necessary coordination was made with the Ministry of Health and the government so that by the next year, patients suffering from hard-to-treat diseases would have no problems in terms of financing treatment, he stated.

Rare diseases prevalence

According to the statistics published in 2019, the number of rare diseases identified in Iran has reached 332 types of diseases and about 4,750 people are covered by the Rare Diseases Foundation of Iran.

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 the births, and raising awareness.

According to WHO, rare diseases are often serious, chronic, and life-threatening. The European Union (EU) definition of a rare disease is one that affects fewer than 5 in 10,000 people. At present, more than 6000 rare diseases are known; around 80 percent of them are genetic disorders and half of them occur during childhood.

Grouped together, rare diseases affect 6–8 percent (or about 30 million people) out of the 508 million population of EU countries. This roughly equals the estimated prevalence of diabetes in the World Health Organization European Region, which in 2013 was 6.8 percent of 658.7 million adults in the 20 to 79-year age group.

Rare diseases are associated with a high psychological burden for the patient but they can also have a major impact on a patient’s family. In addition to the health burden on patients, few of these diseases have effective drug treatment available.

The National Document on Rare Diseases has been approved in December 2020, with the aim of preventing the birth of infants with rare diseases, medical and therapeutic problems.

Patients with rare diseases launched and signed a petition calling for drawing up a national document on rare diseases on the occasion of Rare Disease Day, February 28, 2019.

The main vision of this document is to prevent the birth of infants with rare diseases and to solve the medical and therapeutic problems of rare patients in the country.

FB/MG