The new proclamation by MOH-Iran on vaccination prioritization for some of difficult-to-treat diseases has made rare diseases communities concerned which are more vulnerable. The rare communities has called for fair COVID – 19 vaccines allocation and distribution and objected to the discriminatory method of prioritization.
RADOIR News- Due to the high risk vulnerability of the rare patients against COVID-19, the representative of Icthyiosis, EB, NF, Alopecia, Miyastini Gravis, Autoimmune Deficiency, PKU, Osteogenesis Imperfecta communities have objected to vaccination discrimination of vaccination prioritization.
According to the declaration by deputy treatment of the ministry of health in Iran on 16th March, 2021, a group of patients living with specific diseases like Hemodialysis, Peritoneal dialysis, Hemophilia, Thalassemia, MS, MPS, CF, SMA, Autism, organ transplantation, cancer and PID recognized as of high risk group of diseases with vaccination prioritization among which only MPS, SMA and PID are considered as rare diseases. Based on the recent statistics by the medical committee of the Rare Diseases Foundation of Iran (RADOIR), there are 342 types of rare diseases identified which have no access to orphan drugs and of high costs and at the same time the expenses are too high and also have unclear vaccination plan due to their status.
There is no specific protocol for the methodology of prioritizing the rare patients.
Dr. Hamid Reza Edraki, RADOIR’s Managing Director declared, “ By now we have had lots of correspondences with deputy treatment of MOH and FDA in Iran regarding prioritizing the rare patients according the national vaccination program. Yet no result and the difficult-to-treat diseases are included in the program with prioritization. No specific protocol for the methodology of prioritizing the rare patients! The voice of some unregistered rare communities are not heard even that of a few of them.”
He has also requested to provide rare patients with the vaccines and added that autoimmune deficiencies and genetic disorders are the common specifications among the rare patients and there should be a serious attention and consideration, accordingly.