Bone marrow transplantation is one of about 1,000 people in Iran suffering from epidermolysis bullosa (EB), a rare and deadly genetic disease that causes skin, wound and scarring.
This is a painful condition that often compares EB to third-degree burns to your skin.
“It [feels] Like boiling water, it falls on your skin. You can feel this pain no matter the day; “You can see how you’re losing your skin,” Kikhosrawi told Al Jazeera in northeastern Iran’s Sabzevar.
But thanks to the importation of special bandages from the Swedish medical company, Molnikek, her pain was removed for a few years and her condition was easier to manage.
Kiposravi said the product, Mapilex absorbent foam dressing, can easily take fluid from the wound, which heals it faster and makes life more bearable, Kikosravi said.
“I could easily do my daily work, I could change my clothes without hurting my clothes,” he said.
But after the United States, led by former President Donald Trump, withdrew from Iran’s nuclear deal with world powers in May 2018, and imposed unilateral sanctions on Iran, Mollenak stopped exporting Maplex products to Eripel and ended his temporary relief.
Iran’s alternative is to control the wound and prevent infection in regular dressing with medicine along with petroleum jelly. But it’s not very effective, Kikhosravi said.
Without Mapilex, Kikhosravi was unable to control the wound on his leg which continued to grow. The infection eventually spread to her bloodstream, and on June 1, 2020, her leg had to be amputated below the knee to prevent the infection from spreading further.
“It was a painful process and it was frustrating to lose my leg,” Kikhosravi said.
According to the Iranian Center for International Criminal Law (ICICL) in The Hague, about 30 Iranian EB patients – most of them children – have died since Mollenak stopped selling his dressings to Iran. For EB survivors, the pain has increased by 100 percent.
In response to an investigation by EB Home, an Iranian NGO that helps provide Iranian clothing to Iranian patients, Mollenke said in a letter in March 2019 that he had decided not to do business with Iran at any time due to US sanctions. To be “
“This also applies to businesses operating under any form of U.S. economic sanctions,” it said.
While the United States has claimed that the “humanitarian window” is open under its sanctions, Human Rights Watch (HRW) said in 2019 that “overbroad” sanctions still “harm Iran’s right to health, including access to life-saving drugs.”
ICICL therefore lodged a complaint with Sweden’s National Contact Point, alleging that Mollenke’s organization violated the Financial Assistance and Development Guidelines, “adversely affecting the human rights of EB patients in Iran, failing to obtain adequate human rights due to inadequate human rights and treatment.”
The “dissolution decision” needs to reduce the “potential impact” and if companies need to grant exemptions, it must be done “responsibly,” the complaint said.
It urges Mollenke to find a way to continue selling its products to Iran, free from US sanctions, or to find suitable alternatives so that children can get the life-saving products they need.
It has also demanded compensation for affected children and families of EB patients who die from the disease.
Al Jazeera did not respond to a request for comment at the time of publication.
Tara Sepahari Farrell, a researcher at HRW, told Al Jazeera that “it is not uncommon for companies to take care of sanctions that they have ‘excessively complied with’ for fear of being punished.”
After HRW reported on the issue in 2012, UNICEF helped the United Nations Children’s Emergency Fund bring special dressings to Iran, but there are still problems with the Iranian government’s lack of transparency.
“Unfortunately patients are at the end of a very complex pipeline, whose problems are exacerbated by restrictions and a lack of internal transparency,” Farr said.
In April, Iran’s High Council for Human Rights sent one Letter to the Council of the European Union It said many EU member states had “deliberately harmed the health and well-being of the Iranian people, especially children, women, the elderly and persons with disabilities.”
It lists the names of more than a dozen children who died from lack of access to critical medicines from the EB and described European countries refusing to work with Iranian firms on medicine, medical equipment and vaccines.
Kikhosravi said that everyone in the world should have access to Mapilex dressing, no matter where they come from.
“The government’s ban should not hurt the people,” Kikhosravi said. “Or if they do [implement sanctions], They must ensure that individuals have access to medical products. ”
Ahmed Mousavi, a 300-year-old girl from Ahvaz, western Iran, had a two-month-old baby girl, Jinab, who died last July from epidermolysis bullosa, which doctors could not treat.
Starting at her legs and feet her wounds spread over her body at the time. The baby cries and screams all day, because it was “unbearable” pain for the baby to endure, Mosavi said.
“She was silent when she was asleep or when her mother was feeding her, but you can see the tears in her eyes,” he said.
They used medicine and some creams to help the wounds, but only Maplex dressings healed.
Due to the US embargo, she only had a few days’ worth of clothing, but this helped Zinab quickly because it had a cooling effect and she didn’t feel any pain while using Mapilex.
“My wife is suffering a lot [Zeynab’s death]. She is in therapy and is currently using medication for her mental condition, ”Mousavi said.
“It simply came to our notice then. I just want to let people know that everyone deserves medicine and dressing, whoever has such a problem, ”he said.
“If the dressings do not come to the country due to restrictions [the sanctions are] Definitely affects the normal person – children. No one deserves to have their child grieve or die because they don’t get this dress. ”