We fight for …
The meaning of hero; in this medium, the term “Hero” refers to all the butterfly patients of all ages, regardless of their nationality, country, ethnicity, skin color and religion. All those who were able to fight this unwanted congenital disease and managed to carry on with their normal life activities, including cultural, artistic, social activities and continued their education and achieved high social situation while enduring their pain and problems.
Now the meaning of the word “Hero” in a country like Iran has become more meaningful, as it has in the past year, regarding the fact that despite the severe economic problems as well as international pressure and medicine sanctions due to political disputes between the United States and the Iranian government.
These children have been under “medicine sanction” since “May 2018” without access to any medication or bandage, but still, they refused to give up and endured more pain trying to maintain their social and educational situations.
While “15 children have died in the past year” and the whole EB patients community in Iran are aware of that, have did not lost their hope and are still struggling with the disease. ( for more information please check this page )
US sanctions have violated the basic human rights principles against all Iranian citizens in their right for development and healthcare. Although humanitarian goods such as food and medicine have been exempted from the sanctions, but they have also been violated, and enforcement agencies have consistently enforced those laws to make the food and medicine industry more vulnerable to the sanctions.
In fact, when a country’s financial system is closed due to sanctions, all areas including food and medicine suffer the most of pressure and by this, sanctions violate the basic and vital rights of citizens and severely disrupt the people’s food security and health system. This is exactly the case with Iranian butterfly patients.
European companies (specifically, a Swedish pharmaceutical company that manufactures specialized bandages for these patients and has been trading with Iran for many years) have refused to sell these medicines to Iran because of the sanctions targeting the country’s monetary transactions; in the meantime, 15 children have lost their lives and due the lack of medicine while according to doctors and experts, their pain increased by “70 percent”.
But, after continuous efforts to purchase similar medications from another pharmaceutical company, not only their pain did not decrease but also it was greatly intensified causing severe bleeding s and neurological reactions. Following complaints from the families of the patients, doctors launched extensive researches into the issue and found out that since the patients’ body systems had been used to specific medications for a long period, it reacted negatively to other similar medications.
Since there are about six hundred and thirty EB patients in Iran, the Iranian government is among the 48 countries that purchases medications and has so far failed act seriously in their regard due the high cost of launching a production line for this medication. On the other hand, however, many Iranian physicians and experts have tried to work in order to launch this production line but for many reason such as financial interest there was no cooperation and proper exchange of information from laboratories and pharmaceutical companies.
There currently more than “630 patients” suffering from Epidermolysis Bullosa in Iran from all ages, all of whom are in severe pain and are struggling with the disease and they are trying to fight against medical sanctions as well. Like other people, they have the right to live and the right to use medications like other EB patients around the world but they do not have access to such thing but currently they have been prevented from treatment and this issue has caused great damage to their mental status and impacted their self-esteem negatively compared to previous years and they have lost hope of any partial recovery. In some cases, patients have lost control of their normal lifestyle and their social activities were disrupted and they were forced to stay inside their homes resulting in deterioration of their situation.
As human rights media activists, we believe we are obliged to fight for raising awareness for this disease as we work to save the lives of these patients and fight for their rights internationally so that they can enjoy their basic rights.