UN Human Rights Experts to Iranian Butterfly Kids: ‘Stay at Home, We Are Your Voice in the World’ Commentary
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UN Human Rights Experts to Iranian Butterfly Kids: ‘Stay at Home, We Are Your Voice in the World’

Following the reimposition of US sanctions on Iran on May 8, 2018, a Swedish bandage maker, Mölnlycke, decided to halt shipments to Iran, and this decision has affected patients in Iran who are affected by a severe and life-threatening rare skin condition called Epidermolysis Bullosa (EB). Many patients in Iran, where an estimated 800 to 1,200 patients live with EB, are kids who are often referred to as “butterfly kids” because their skin is as fragile as a butterfly’s wings. In a statement issued on October 19, 2021, six UN human rights experts stated that a Swedish bandage maker’s decision to halt shipments to Iran is over-compliance with US secondary sanctions, which harms the ability of Iranian patients to enjoy their human rights, particularly the right to health, to be free from physical and psychological pain, inhuman treatment, and the right to life.

Described by US dermatologists as “the most painful disease you’ve never heard of,” EB is caused by a genetic mutation and occurs once in every 30,000 to 50,000 live births, globally. EB is a rare hereditary disease that develops blisters or wounds like third-degree burns which are quite painful (see here). These patients often require extensive bandaging from head to toe and are at risk of malnutrition and esophageal strictures. Bathing and wound management can take 3-5 hours at a time. Even the slightest knock or touch can trigger painful blistering. The only relief that 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. Following the reimposition of US sanctions on Iran on May 8, 2018, the Mölnlycke company decided to halt shipments to Iran. As a result of this decision, the situation in Iran had become so dire that independent Iranian activists in Europe have been helping to alleviate the shortage by sending pre-ordered bandages with travelers to Iran. Also, so desperate are some patients to obtain proper bandaging that they have been repeatedly applying the one single-use patch they managed to obtain recently by cleaning it with alcohol (see here). Some bandages have also been procured and shipped to Iran through humanitarian assistance. For example, in May 2020, with the financial support of the Government of Germany, UNICEF had shipped 5.8 metric tons of the wound dressings from Swedish pharmaceutical company, Mölnlycke and delivered them to Iran’s Ministry of Health (see here). However, these measures failed to completely prevent harm to butterfly kids. Hamid Reza Hashemi-Golpayegani, the head of the NGO that helps such patients, said that at least 15 Iranian kids with EB have died since the US launched its new sanctions on Iran.

While companies are free to decide where to sell their products, companies that produce critical medical and humanitarian goods have a special responsibility, experts said. When sales of a medical product that improves the right to health and prevents suffering are halted in a country, and no equivalent alternative product is available, that right is harmed for people who were helped by it. In Alleged Violations of the 1955 Treaty of Amity, Economic Relations, and Consular Rights case, the International Court of Justice, which based its jurisdiction only on a bilateral economic agreement (Treaty of Amity, Economic Relations, and Consular Rights 1955), said that the United States shall remove any impediments to the free exportation of medicines and medical devices to the territory of Iran and shall ensure that payments and other transfers of funds related to medicines and medical devices are not subject to any restriction. By including this obligation in the interim order of October 3, 2018, the Court emphasized its urgent implementation.

Given that the Swedish company’s decision violates the human rights of Iranian butterfly kids, the international responsibility of the Swedish government can also be raised. In addition to respecting human rights, Governments have a duty to ensure respecting human rights. Specifically, in the case of Iranian butterfly kids, the Swedish government is obliged under Article 3 of the Covenant on Economic, Social and Cultural Rights to ensure the enjoyment of all economic, social and cultural rights set forth in this Covenant, including the right of the enjoyment of the highest attainable standard of physical and mental health (Article 12 (1)). Also, under the UN Guiding Principles on Business and Human Rights, Governments have a duty to ensure that companies’ actions are aligned with this objective that companies have to avoid infringing upon human rights throughout their operations and wherever they do business. In this regard, experts said that although the Swedish company has a human rights policy, the Swedish government’s passive approach to the company’s decision violates its commitment to guaranteeing human rights. In this regard, Iranian Foreign Minister, Mohammad Javad Zarif, has urged European countries, Sweden in particular, to Mölnlycke Health Care to sell products enabling Iranian kids with EB to cover their wounds.

UN Human Rights Experts’ statement on October 19, 2021, is in line with other efforts made to obtain dressings from the Swedish company. In this regard, the Iranian Center for International Criminal Law, a non-governmental organization, filed a complaint against the Swedish company at the Swedish National Contact Point under the specific instance procedure of the OECD Guidelines for Multinational Enterprises (see here). Also, Ms Alena Douhan, UN Special Rapporteur on the negative impact of the unilateral coercive measures on the enjoyment of human rights, has contacted both the company and the Swedish Government with a view toward resolving the problem of butterfly kids. However, none of these measures has completely solved the problems of butterfly kids in Iran, and several butterfly kids have so far gone to the skies. I hope that soon the dressings and medicines of these kids will be as easily available to them as before because the world without butterflies is not a beautiful place to live.


Vahid Bazzar is a PhD graduate in public international law at Allameh Tabataba’i University School of Law and Political Sciences, Iran. His research interests span international dispute settlement, including the International Criminal Court and the International Court of Justice. Dr. Bazzar may be contacted at vahidbazzar@gmail.com.


Suggested citation: Vahid Bazzar, UN Human Rights Experts to Iranian Butterfly Kids: ‘Stay at Home, We Are Your Voice in the World’, JURIST – Student Commentary, December 3, 2021, https://www.jurist.org/commentary/2021/12/bazzar-vahid-UN-human-rights-experts-iranian-butterfly-kids/.

This article was prepared for publication by Viraj Aditya, a JURIST staff editor. Please direct any questions or comments to him at commentary@jurist.org

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