Patients with spinal muscular atrophy (SMA) and their families have issued a strongly worded statement holding the Support and Development of Therapeutic Services Authority fully responsible—both legally and ethically—for what they described as unjustified delays in sending children abroad to receive the gene therapy injection Zolgensma in the United Arab Emirates.
The statement accused the authority of prolonged administrative procrastination that has deprived children of timely access to critical treatment, despite the urgent and time-sensitive nature of the therapy.
Preventable Deaths and Worsening Health Conditions
According to the families, the repeated delays directly contributed to the deterioration of several children’s health conditions and, in some cases, led to deaths that could have been prevented had procedures been completed on time.
The statement said that postponements—justified by what it called “weak and unfounded procedural excuses”—denied children treatment at the medically decisive stage, resulting in severe complications that cannot be reversed in advanced phases of the disease.
Families stressed that any death or irreversible health decline caused by this stalling must be borne by the relevant authorities, placing primary responsibility on the Support and Development of Therapeutic Services Authority.
Call for Immediate Prosecutorial Investigation
The families urged the Office of the Attorney General to take immediate action by launching an independent and transparent investigation into the delays.
They called for legal measures against anyone found to have been negligent, complicit, or directly responsible for obstructing the treatment process, emphasizing the need to ensure accountability and prevent impunity.
A Test of Humanitarian and Professional Responsibility
The statement concluded that the case of children suffering from spinal muscular atrophy represents a true test of humanitarian, ethical, and professional commitment.
Families demanded that all procedures be accelerated without further delay and that the current state of paralysis be brought to an end, in order to safeguard children’s right to urgent, life-saving treatment and prevent similar tragedies from recurring.
