At a meeting held between the High Council for Human Rights and 60 ambassadors, staff and heads of missions of international and regional organizations living in Tehran, which was attended by the Secretary and International Deputy to Secretary of the HCHR on Sunday, Younes Arab, the Director of the Iranian Thalassemia Association and representative of thalassemia patients said that this disease is associated with enlargement of the spleen and bone changes, and due to the high prevalence of this disease around the Mediterranean Sea, it was named thalassemia.
"Thalassemia is a genetic disease that is inherited from parents and is associated with people from birth to the end of life", he added.
Speaking on the history of the Iranian Thalassemia Association, Arab said that The Iranian Thalassemia Association was established in 1990 by a number of parents of children with thalassemia major and doctors involved in the treatment of these patients and now has more than 23,000 patients across the country." The Iranian Thalassemia Association is an official member of the World Thalassemia Federation (TIF) and in May 2019 was awarded the United Nations Advisory Office.
He went on to say about the actions of the Iranian government in supporting thalassemia patients and said that In 1998, according to the decision made by the then government of Iran, all the expenses of the patients were covered. These measures included injecting blood products and covering the support services of insurance organizations with full support and providing special medicine needed for quality treatment for all 23,000 thalassemia patients in the country. This process was done in the best possible way until early May 2018, which unfortunately, after this date, we have faced painful challenges until today.
The representative of thalassemia patients in Iran said: "If thalassemia patients want to have a better life, they will need two things, namely quality medicine and standard medical supplies."
"But today we are in a severe shortage of these medicines and annually we need seven million vials of desferrioxamine, according to the estimates of the Ministry of Health of Iran, but unfortunately this amount was only one million vials last year."
Arab also talked about the medical necessities of drug injection and said that some medical necessities and equipment have become a dream for the loved ones of Iranian thalassemia because we have been cowardly sanctioned by western and American companies. This is nothing but an obvious crime against humanity and thalassemia patients in Iran, he said.
He acknowledged that the reasons for the supply of drugs and medical supplies were the lack of sales of drugs by pharmaceutical companies due to fears of US sanctions, the impossibility of financial exchange, the impossibility of proper drug transfer and the increase in drug and equipment costs.
"On behalf of the Thalassemia Society of Iran, I ask you, as the representative of nations and governments, to prevent such situations and to provide medicine and medical equipment as an inviolable rule in international law. The inherent and vital rights of Iranian thalassemia patients have been violated by criminal policies, and I demand that you establish mechanisms to restore the status quo ante.
In the end, Arab stressed that we demand the administration of criminal justice for international criminals.