Protestors marched to the Ministry of Health in Nicosia today to demand funding for 10-month-old Asya Polatlı who was born with Type 1 SMA (Spinal Muscular Atrophy), BRT reported. The disease causes breathing, eating and locomotive problems. The baby is very weak and cannot move its arms and legs, nor lift its head or remain upright without support. Infants with Type 1 SMA are not expected to survive for more than a few years because of respiration issues. The disease, however, does not impair cognition or the intellect.[Ed.]
Arriving in front of the ministry building, the activists, demanded that treatment for baby Asya begins immediately. The treatment is a one-time use of the drug Zolgensma, a gene therapy and costs 2.5 million dollars.
The activists said that they would remain in front of the Ministry of Health until they had an answer.
At this time, baby Asya in in Ankara at a hospital which is not giving any treatment to the baby because she is not a Turkish citizen and therefore, cannot benefit from the Turkish Social Insurance Institution system.
Calls have been made to accelerate her application for Turkish citizenship.
The protestors said that the Ministry of Health should cover her treatment charges or solve the issue some other way. They requested a meeting with health minister Unal Ustel.
They issued a statement saying: “ We lost Karel*, we will not lose Asya, we will keep Asya alive”.
*Karel is the name of a six-month-old baby, suffering from the same disease, who died in North Cyprus in July. Karel’s parents transferred all monies raised to treat their child to Asya.
Zahide Aliusta from the Universal Children’s Rights Association also took the floor in the protest and said, “The right to survive, which is one of the most basic rights, includes the child’s access to nutrition, shelter, and access to health services. How much can baby Asya benefit from this right?” she asked.
Stating that the Asya represents all children who are disadvantaged and cannot benefit from the right to health, Aliusta emphasised that in the international agreements signed by the TRNC Assembly, the state is responsible for creating the necessary conditions for the prevention and treatment of diseases and for the supply of medicines, and called for action to be taken.