Iran following up on case brought by EB patients against U.S.

February 8, 2022 - 17:7

TEHRAN – Iran is pursuing the case indicting 30 U.S. officials and entities for harsh sanctions which are threatening the lives of hundreds of epidermolysis bullosa (EB) patients in the country.

A lawsuit has been filed by 295 EB patients and their families against 30 individuals and entities, including the U.S. government, over the consequences of the medicine sanctions, Zabihollah Khodaeian, spokesman for the judiciary, said.

A court was held in this regard in Tehran on November 3, 2021, he said, adding, the case is being investigated and a verdict will be issued as soon as the investigation is completed.

The criminal policy of the United States government has caused the death of 15 EB patients from 2010 to 2018 when the Swedish bandage maker has decided to halt shipments to Iran due to fear of secondary sanctions as part of over-compliance.

These patients suffer from epidermolysis bullosa, a severe and life-threatening skin condition, which causes extremely painful wounds. Many are children, who are often referred to as “butterfly kids” because of their fragile skin.

Across the country, 950 people have been diagnosed with EB, but considering that EB is estimated to occur in 1 newborn per 50,000 live births, it is suggested that in Iran 1,200 people are suffering EB.

Without the bandages, they face difficulties even in their daily routine, including walking, eating, or even breathing, and unfortunately, there is no alternative treatment for such pain.

Exemptions for humanitarian trade (such as food, medicine, and medical equipment) have not been effective in protecting Iranian patients from access to imported medicine.

Sanctions hurting Iran’s ‘butterfly kids’: UN

Over-compliance with United States-imposed sanctions against Iran is harming the right to health, and people with rare skin disease are among those affected, many of them children, experts appointed by the UN Human Rights Council said on October 20.

As a result, EB patients in Iran can no longer enjoy the right to health, said the experts.


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