Protest Gathering in Front of the Presidential Office; No Money for SMA Patients' Medication

The newspaper 'Shargh' reported on a protest gathering by SMA patients in front of the Presidential Office, stating that the medication, which was distributed in limited quantities to SMA patients, has been halted due to insufficient budget and lack of adequate resources. The report emphasized that for this reason, families and SMA patients held another gathering in front of the Presidential Office on Tuesday, December 20. SMA, or Spinal Muscular Atrophy, is a group of genetic disorders where individuals cannot control their muscle movements due to the loss of nerve cells in the spinal cord and brainstem. This is a neurological disease and a type of motor neuron disease. According to the newspaper, a significant and tragic event for these patients is the cessation of medication distribution for patients under 11 years old, especially since Ebrahim Raisi had promised from the beginning to provide medication for all patients. However, the Ministry of Health has stated that there is not enough budget to provide medication for these patients in response to the protests and issues that have arisen. 'Shargh' also reported on the ministry's claim of localizing the medication in Iran, stating, 'The condition of young SMA patients is so critical that their families are more worried than ever, seeking ways to demand and save their loved ones' lives by securing medication.' In this context, Saeed Azemian, the CEO of the SMA Patients Association, criticized the ongoing process of medication provision and distribution as playing with patients' lives, stating, 'The Ministry of Health has no plan for providing medication for patients other than vague and unclear rumors of localizing the medication.' The CEO emphasized that 'no decisive, clear, and hopeful response regarding the determination of medication for patients in need was given at the Presidential Office.' Experts consider these events in the field of special patients as a widespread trend and believe that these problems will be more pronounced in the coming year than ever before. Others have criticized the policy of increasing the population at any cost, arguing that the elimination of screening is a factor in increasing the number of people with disabilities and special diseases, which could lead to numerous challenges for the country in the future. The elimination of screening and prevention methods for pregnancy intensified in Iran after Ali Khamenei emphasized the policy of increasing the population and called for its preparations. Officials, however, pursued 'population growth at any cost' without considering the economic, social, and welfare prerequisites. Accordingly, traces of this approach are also seen in the Islamic Republic's broadcasting, as a program aired on December 19 sparked reactions with a question posed between the host and guest about which option they preferred: not having children or having a disabled child. The website 'Tabnak' reported on this, stating, 'The shameful question in a competition on Channel 2 television, which posed the dilemma of preferring not to have children or having a disabled child, provoked many reactions in cyberspace.'