Hadi Keykhosravi (Hadi Keykhosravi) is one of about 1,000 people in Iran suffering from epidermolysis bullosa (EB), a rare and fatal genetic disease that can cause skin formation Blisters, sores and wounds.

People with EB often compare their skin with third-degree burns, which is a painful condition.

“it [feels] Like boiling water, it falls on your skin drop by drop. You can feel this pain at any time. Keykhosravi, 29, told Al Jazeera from his home in Sabzevar, northeastern Iran.

However, due to the import of special bandages from the Swedish medical company Molnlycke, his pain has been reduced for several years and his condition is easier to control.

Keykhosravi said that this product, called Mepilex absorbent foam dressing, can easily absorb fluid in the wound, making the wound heal faster and making life longer.

He said: “I can easily carry out daily tasks and can change clothes without hurting sores.”

But after the United States under the leadership of former President Donald Trump withdrew from Iran’s 2015 nuclear agreement with world powers in May 2018 and imposed unilateral sanctions on Iran, Molnlycke stopped Exported Mepilix products to Iran, and his temporary relief ended.

Another option in Iran is to use regular petrolatum dressings and drugs to control ulcers and prevent infections. However, it is not that effective, Keykhosravi said.

Without Mepilex, Kihoslavi found that he could not control the growing wound on his leg. The infection eventually spread to his blood, and on June 16, 2020, his leg must be amputated from the knee to prevent the infection from spreading further.

Keykhosravi said: “Therefore, losing my leg is a painful process and mentally depressing.”

According to the Iranian International Criminal Law Center (ICICL) in The Hague, since Molnlycke stopped selling its dressings to Iran, nearly 30 Iranian EB patients (mainly children) have died. For EB survivors, suffering increased by 70%.

In response to an inquiry from the Iranian NGO EB Home, Molnlycke helped provide Iranian patients with Swedish dressings. In a letter in March 2019, Molnlycke stated that due to U.S. sanctions, it “decided not to cooperate with Iran conducts any business presence”.

It said: “This also applies to business conducted under any form of exception to US economic sanctions.”

‘Endangering Iranians’

Although the United States claims to maintain a “humanitarian window” under sanctions, Human Rights Watch (HRW) stated in 2019 that “excessive” sanctions are still “damaging the right to health of Iranians, including the right to life-saving medicine.”

Therefore, ICICL filed a complaint with the Swedish National Contact Point, stating that Molnlycke had “failed to conduct proper human rights due diligence, which adversely affected the human rights of Iranian EB patients, and did not take remedial measures, thus violating the guidelines of the Organization for Economic Cooperation and Development. Its impact”.

The complaint stated that the “disengagement decision” requires the reduction of “possible impact” and that if the company is required to disengage, it should be done in a “responsible manner”.

It called on Molnlycke to find a way to continue selling its products to Iran by obtaining exemptions from US sanctions, or to arrange appropriate alternatives so that children can obtain the life-saving products they need.

It also called for compensation for affected children and families of EB patients who died from the disease.

At the time of publication, Molnlycke had not yet responded to Al Jazeera for comment.

Tara Sepehri Far, a researcher at Human Rights Watch, told Al Jazeera: “The reason for seeing companies “excessively complying” with sanctions is that the sanctions are very extensive and complex due to fear of being punished.”

Fall said that after Human Rights Watch reported the problem in 2019, UNICEF-UNICEF-helped bring specific dressings to Iran, but there are still problems because of “the lack of transparency on the Iranian government.”

“Unfortunately, patients are at the end of a very complex pipeline, and sanctions and lack of internal transparency exacerbate patient problems,” Far said.

“Intentional damage”

In April, the Iranian High Commission for Human Rights also issued Letter to the Council of the European Union He said that many EU member states “inflicted deliberate damage to the health and well-being of the Iranian people, especially children, women, the elderly and the disabled”.

It lists the names of more than a dozen children who died of EB due to lack of access to important drugs, and describes how European countries refused to cooperate with Iranian companies to develop medicines, medical devices and vaccines.

Keykhosravi said that everyone in the world should be able to use Mepilex dressings no matter where they are from.

Keykhosravi said: “The government’s sanctions should not cause pain to the people.” “Or if they do [implement sanctions], They should ensure that people can use medical products. “

Ahmad Mousavi, 30, from Ahvaz in western Iran, had a two-month-old baby girl named Zeynab who died of bullous sex in July last year Epidermolysis cannot be treated by doctors.

Sores starting from the feet and legs pass over time throughout the body. Mousavi said that babies cry and scream all day, because babies have to endure this is “unbearable” pain.

Zeynab Mousavi will only stop crying when the Swedish Mepilex dressing is applied to the sore [Courtesy: Ahmad Mousavi ]

The only time he remained silent was when she was sleeping or when her mother was feeding her, but even then, you can still see tears emanating from her eyes, he said.

They tried medications and some creams to help the sores, but Mepilex dressing is the only way to help.

Due to US sanctions, they only have enough dressings to use for a few days, but it can immediately help Zeynab because it has a cooling effect and she will no longer feel pain when using Mepilex, Mousavi said.

“Since my wife has suffered a lot [Zeynab’s death]. She is undergoing treatment and is currently using drugs for her mental condition,” Mousavi said.

“This experience is difficult for me. I just want people to know who has such problems and everyone deserves medicines and dressings,” he said.

“If the dressing does not enter the country because of sanctions, then [the sanctions are] It will definitely affect ordinary people-children. No one should see their children suffering or dying because they cannot get this dressing. “