Hadi Keykhosravi is one of about 1,000 people in Iran stricken with epidermolysis bullosa (EB), a rare and deadly genetic disease that causes blisters, sores and wounds to form on the skin.
It is such a painful condition those with EB often compare their skin to third-degree burns.
“It [feels] like boiling water, drop by drop falling on your skin. You can feel this pain no matter the time of day; you can see how you’re losing your skin,” Keykhosravi, 29, told Al Jazeera from his home in Sabzevar, northeastern Iran.
But thanks to imports of special bandages from a Swedish medical company, Molnlycke, his pain was relieved for a few years and his condition was easier to manage.
The product, called Mepilex absorbent foam dressing, could easily absorb fluid from the wound, allowing it to heal faster and making life more bearable, Keykhosravi said.
“I could easily do my daily work, I could change my clothes without the sores getting stuck to my clothes,” he said.
But after the United States under former president Donald Trump withdrew from Iran’s 2015 nuclear deal with world powers in May 2018 and reimposed unilateral sanctions on Iran, Molnlycke stopped exporting the Mepilix product to Iran and his temporary relief was brought to an end.
The alternative in Iran is to use regular dressings with petroleum jelly along with medication to control the sores and prevent infection. But it is not as effective, Keykhosravi said.
Without Mepilex, Keykhosravi found himself unable to control a wound on his leg that continued to grow. The infection eventually spread to his bloodstream and on June 16, 2020, his leg had to be amputated from the knee down to prevent the infection from spreading further.
“It was a painful procedure and mentally frustrating to lose my leg because of this,” Keykhosravi said.
According to The Hague-based Iranian Centre for International Criminal Law (ICICL), nearly 30 Iranian EB patients – mostly children – have died since Molnlycke stopped selling its dressings to Iran. For EB survivors, the pain has increased by 70 percent.
Responding to an inquiry by the Iranian NGO EB Home, which helped provide patients in Iran with the Swedish dressing, Molnlycke said in a letter in March 2019 that because of US sanctions it “decided not to conduct any business with relation to Iran for the time being”.
“This also applies to business conducted under any form of exceptions to the US economic sanctions,” it said.
While the United States has claimed it kept a “humanitarian window” open under its sanctions, Human Rights Watch (HRW) stated in 2019 the “overbroad” sanctions are still “harming Iranians’ right to health including access to life-saving medicines”.
That is why ICICL filed a complaint to the Swedish National Contact Point stating Molnlycke breached Organisation for Economic Co-operation and Development guidelines “by failing to undertake appropriate human rights due diligence, adversely affecting the human rights of EB patients in Iran and failing to remedy its impacts”.
“Disengagement decisions” require mitigating “likely impacts” and if companies are required to disengage, it should be done in a “responsible manner”, the complaint said.
It called on Molnlycke to either find a way to continue selling its products to Iran by obtaining an exemption from US sanctions or to arrange a suitable alternative so children can get the life-saving product they need.
It also called for reparations for children impacted and families of EB patients who died from the disease.
Molnlycke did not respond to Al Jazeera for comment by the time of publication.
Tara Sepehri Far, an HRW researcher, told Al Jazeera “it’s not uncommon to see companies ‘over complying’ with sanctions that are very expansive and complicated due to fear of getting punished.”
After HRW reported on the issue in 2019, UNICEF – the United Nations Children’s Emergency Fund – helped to bring the specific dressings to Iran, but there are still issues because of a “lack of transparency on the Iranian government side”, Far said.
“Unfortunately patients are at the end of a very complicated pipeline, whose problems are exacerbated by sanctions and lack of internal transparency,” Far said.
In April, the High Council for Human Rights of Iran also sent a letter to the Council of the European Union that said a number of EU member states have imposed “intentional damage on the health and wellbeing of the Iranian people, particularly children, women, the elderly, and persons with disability”.
It listed the names of more than a dozen children who died from EB because of a lack of access to vital drugs, and described how European countries refused to work with Iranian firms on medicine, medical equipment and vaccines.
Keykhosravi said everyone in the world should have access to the Mepilex dressing, no matter where they come from.
“Sanctions from governments shouldn’t cause suffering for people,” Keykhosravi said. “Or if they do [implement sanctions], they should make sure that people have access to medical products.”
Ahmad Mousavi, 30, from Ahvaz in western Iran, had a two-month-old baby girl named Zeynab who died last July from epidermolysis bullosa, which doctors could not treat.
Her sores that started on her feet and legs spread over time throughout her body. The baby would cry and scream all day, as it was “unbearable” pain for a baby to endure, Mousavi said.
The only time she was silent was when she was sleeping or when her mother was feeding her, but even then you could see tears coming out of her eyes, he said.
They tried medication and some creams to help the sores, but the Mepilex dressing was the only treatment that helped.
Because of the American sanctions, they only had enough dressings to last a few days, but it instantly helped Zeynab as it had a cooling effect and she no longer felt any pain when she used Mepilex, Mousavi said.
“My wife has been suffering a lot since [Zeynab’s death]. She’s in therapy and she’s using medication for her mental situation at the moment,” Mousavi said.
“This experience was quite hard for me. I would only like people to know that everyone deserves to receive medication and dressings, whoever has such a problem,” he said.
“If the dressings aren’t coming into the country because of sanctions, then [the sanctions are] definitely affecting ordinary people – children. No one deserves to see their child suffering or dying because they couldn’t get this dressing.”