One-year-old Asya Polatli, who is in need of expensive gene therapy, flew from Turkey to Larnaca on Monday after health authorities in the Republic of Cyprus said the Turkish Cypriot infant who had already began treatment in Turkey could be admitted to a hospital in Nicosia.
Baby Asya is unable to walk, swallow, or breathe on her own due to severe spinal muscular atrophy, a rare inherited autosomal recessive neuromuscular disease, which can be treated once and for all with Zolgensma, a single infusion gene therapy treatment that costs just over €2 million.
The condition can also be treated by Spinraza, a drug found on a list of approved medicines in the Republic of Cyprus, with the solution costing dozens of thousands of euro. But age restrictions and the number of doses needed could mean the drug may not be appropriate in baby Asya’s case.
On Monday morning an ambulance plane flew the baby and her parents to Larnaca International Airport. The aircraft first went through Greek airspace before reaching the island, as there are no direct flights between Turkey and the Republic of Cyprus due to the political situation. A video on social media showed an ambulance arriving at Makarios hospital.
Last week media reports said Greek Cypriot Health Minister Michalis Hadjipantela had signaled that the Republic of Cyprus was ready to carry out health tests on the little girl to determine what was needed, including calling up the company that makes the expensive drug to have it delivered right away.
The little girl will undergo specialized tests in Nicosia and if the medicine in question can be offered, we are already in contact with the company and it will arrive in Cyprus
“It will be arranged for the little girl to be transported to Makarios Children’s Hospital in Nicosia, where she will undergo some specialized tests and if the medicine in question can be offered, we are already in contact with the company and it will arrive in Cyprus,” Hadjipantela said.
In early July, the little girl’s relatives started a funding campaign after her parents took their baby to Turkey where she began muscle loss treatment. But things were complicated for the family, as Baby Asya was not a Turkish citizen who could qualify for state-funded treatment under the country’s healthcare system.
Reports she said finally managed to gain Turkish citizenship through an expedited process, but at the same time, a Turkish Cypriot activist had sent letters to officials in the south, asking them to step in and help in the procurement of the expensive drug.
Teacher Sener Elcil, an official with the Turkish Cypriot Teachers Union and critic of authorities in the north, had reportedly asked President Nicos Anastasiades and Foreign Minister Nikos Christodoulides to intervene and help the little girl, who is a citizen of the Republic.
The first patient to have received state sponsorship from the Republic of Cyprus for the drug nusinersen/spinraza was a little boy named Antonis, who got the injections in 2018 that seemed to stop his condition from getting worse.
A newer and revolutionary therapy was later approved in 2019 in the United States. The drug costing €2 million for the single dose could only be given to infants up to 2 years of age through an IV and it could not only halt the worsening of the condition but instead improve it gradually.