US Cruel Sanctions against Iran have negatively affected patients with rare diseases , from EB to epilepsy to cancer.
Facing a raft of illegal US sanctions since 2018, Iran has been struggling to pay for urgent medical supplies needed for treatment of patients suffering from rare conditions. The bans effectively bar Iran from accessing the international banking system and prevent foreign companies from providing urgently needed supplies of medicines and equipment to the country, according to press TV.
Hadi Keykhosravi is one of about 1,000 people in Iran stricken with epidermolysis bullosa (EB). Described by US dermatologists as “the most painful disease you’ve never heard of,” EB is caused by a genetic mutation and occurs in every 1 in 30,000 to 50,000 live births globally. Characterised by extreme fragility of the skin and mechanically induced blistering, EB patients are often referred to as ‘butterfly children’ because their skin appears as delicate as that of a butterfly wing. There is no cure.
“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.
The only relief patients receive on a daily basis is through specialized foam dressings that reduce and protect blisters. The most effective dressings are produced by the Swedish pharmaceutical company Mölnlycke and are used by EB patients worldwide, Atlantic Council reported.
But for patients in Iran, access to Mölnlycke supplies for a few years has been next to impossible. 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 temporary relief was brought to an end.
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.
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.
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”.
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, Al Jazeera reported.