Missed Opportunity for Early Treatment in Cyprus
In a heart-wrenching account reported by philenews, Pantelis Costa shared the story of his son, Konstantinos Efraim, who was diagnosed with Spinal Muscular Atrophy (SMA) at the tender age of two months. The diagnosis has shone a light on the critical gaps within the Cypriot healthcare system, particularly affecting the care of critically ill children. The lack of newborn screening for Spinal Muscular Atrophy in Cyprus has been pinpointed by Costa as the reason for his son’s irreversible condition. “If this test had been available,” he laments, “Konstantinos could have received treatment within the first 20 days and be walking today.” He referenced the case of another child, Antonis, diagnosed with SMA five years prior, which indicated that the authorities were indeed aware of the disease and the importance of early intervention.
Bureaucratic Hurdles and Delays in Care
Despite eventually receiving treatment, bureaucratic hurdles and delays in care have put Konstantinos at risk, with the family facing financial hardship and relying on friends and relatives for support. Costa has voiced his frustration with the healthcare system’s shortcomings, including the absence of vital equipment like a cough machine and the delays in securing a doctor qualified to operate it. The Costas’ pleas for home care and nursing support have been met with an agonizing four-month wait and alleged mockery from officials. “It has been tragic,” Costa expressed. “If it weren’t for me, the baby would have died,” he revealed, recounting an incident where he had to intervene due to a critical drop in his son’s oxygen levels.
Financial assistance for the family arrived too late, forcing them to cover expenses for necessary equipment such as portable oxygen themselves. The Costas are also burdened with frequent trips to specialists, which greatly exceed the modest €150 monthly allowance they receive, falling short of their actual €700 monthly expenses. With Konstantinos having been hospitalized ten times, some of which could have been preventable with proper care, the emotional and financial strain on the family is immense.
Costa has openly criticized the Ministry of Health and Nursing Services for their lack of response and empathy. He is now considering legal action against the state for its failure to implement newborn screening for SMA and provide adequate home care services.
