At least 93 thalassemia patients died in Iran last year alone due to heart failure caused by lack of quality medication and injection of low-quality drugs. The medication, however, is already there but many patients cannot afford expensive drugs or the drugs are of low quality.
“When a high percentage of thalassemia patients die from heart disease, this is undoubtedly due to lack of drug injection or the lack of quality medicine,” said Meysam Ramezani, chairman of the board of directors of the Thalassemia Association in an interview with state run ILNA new agency on May 8, 2018.
A thalassemia patient must receive blood to survive. With the injection of each unit of blood, about 300 to 350 milligrams of iron is accumulated in the body, but increasing amount of iron has negative effects first on the liver and then on the heart. The liver can cope with the accumulation of iron, but the heart cannot, therefore could get complication with sever difficultly.
Ramezani further stated that last year we were faced with the volatility of the distribution of the imported drugs and the drug was not available to thalassemia patients on numerous occasions and this year also the main Thalassemia medication called ‘Desferal ‘has not been received for three months and its inventory is zero because the limited amount of imported Desferal drug is also held in Custom as a result of the recent currency depreciation in the country.
On the reason behind the lack of proper distribution of medicines Ramezani explained: “Last year, health centers owed to distributing companies and could not pay their debts to them, when asked why? They in turn claimed that they were not paid by the insurance companies, we referred to insurance companies and they also claimed that the Ministry of Health owed them, thus it was not clear who is in charge and should pay for these costs? Consequently, the poor patients are the one who are paying the cost of this confusion with their lives.”
According to Ramezani the lack of accountability and poor management by the authorities has endangered the lives of these patients.
“The number of thalassemia patients in Iran is about 18,000 people who are taking drugs, including 12,000 people taking imported foreign drugs; so I do not think that our country lacks financial resources and could not meet this cost; it is all about corruption and mismanagement,” he added.
Thalassemia is a common disease in Iran.