According to Fars news agency’s health group, Hamidreza Nagnafi, the CEO of Iran’s Rare Diseases Foundation, in response to the news of “determining the task of the support budget for special and incurable patients this week”, emphasized: This budget is going to be proposed in the Guardian Council. In August of last year, the preparation and compilation of the national document for “rare diseases of Iran” was carried out and announced by the presidency.
He continued: In December of 2019, the parliament approved a budget line for supporting rare patients in the form of the budget of the Ministry of Health, and also approved and notified the National Day of Rare Diseases (March 8) in the Cultural Revolution Council, so that these patients can benefit from insurance and pharmaceutical services. receive treatment and support from the government; But now we see that other diseases that are known as special and incurable diseases are also included in this budget.”
The CEO of the Rare Diseases Foundation pointed out that special patients have had a budget for many years, but they are not medical in nature, but they are rare, and said: There are still hands in this budget to misuse the budget. In addition, the president’s order has not yet been implemented, and this issue deserves a lot of thought.
The CEO of Iran’s Rare Diseases Foundation continued: This is despite the fact that the budget considered is a limited budget, and if other diseases that are not among rare diseases are to be included in this budget, the share of rare patients, which has staggering costs, will be very limited. became.”
Stating that they are trying to take the necessary measures in this field so that the rights of rare patients are not lost, Perghani said: It is surprising that after a long time that rare patients are supposed to be supported by the government, other patients are added to this budget. they do. “This budget is for rare patients who did not have insurance and have very expensive drugs.”
Emphasizing that such a process is against the law and against the document and resolution of the parliament, he added: “Currently, we have written many letters and emphasized that this budget is for rare patients, and after many years, it was decided to take action for these patients and Do not go against the law.
The CEO of the Rare Diseases Foundation of Iran noted: We have made many protests and sent them to the organization’s office, and we are still trying to get our words to the ears of the authorities. We will try to get an acceptable result by the end of this week.
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