Some $280m spent annually on rare diseases treatment

June 23, 2020 - 18:13

TEHRAN – The Iranian government spends a total of 12 trillion rials (nearly $280 million at an official rate of 42,000 rials) to provide medical treatment and pharmaceutical services to the patients suffering from rare diseases, Mehdi Shadnoush, head of the Health Ministry's center for transplantation and disease management, has announced.

Currently, 11 groups of rare diseases patients are under the special support of the Ministry of Health, including thalassemia, hemophilia, dialysis (blood and peritoneal), multiple sclerosis (MS), epidermolysis bullosa (EB), mucopolysaccharidosis (MPS), spinal muscular atrophy (SMA), autism, cystic fibrosis, transplantation, and cancers, he explained.

300 rare diseases diagnosed in Iran

Hamidreza Adraki, the Rare Diseases Foundation of Iran director said in June 2019 that 300 types of rare diseases have been diagnosed in Iran.

Rare disease or disorder is defined as rare when it affects 2 in 10,000 people.

Genetic disorder is the most important reason for rare diseases in Iran, which is caused by cousin marriage.

Rare diseases are often serious, chronic, and life-threatening. At present, more than 6000 rare diseases are known; around 80% of them are genetic disorders and half of them occur during childhood.

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 an effective drug treatment available. This is because the drugs to treat rare diseases (called orphan drugs) are not commercially viable for pharmaceutical companies, due to the small number of patients per disease. 

U.S. sanctions exacerbate conditions

According to official statistics, about 120,000 people in the country are suffering from rare diseases. With the onset of COVID-19 in Iran, the situation has been worsened.

At the same time, the issue of social and welfare support for these patients remains strong, although oppressive U.S. sanctions have further increased concerns about these patients.

Although food and medicine were claimed to be exempted from the U.S. sanctions, financial and banking sanctions have limited the life-saving medicine trade which harshly targeted the patients suffering from rare diseases.

Moreover, fears of falling afoul of Washington have restricted exports to Iran.

Exemptions for humanitarian trade (such as food, medicine, and medical equipment) have not been effective in protecting Iranian patients from access to imported medicine, such as the bandages used for patients suffering Epidermolysis Bullosa (EB), a rare genetic disease that causes painful blistering of the skin.

With the return of sanctions, over a year (May 2018-May 2019), 15 patients covered by EB Health House lost their lives, including Ava, a two-year-old girl in Ahvaz city, who died of infection and lack of skincare.

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