Luka Dončić (Dallas Mavericks) met with the little boy named Kris who is undergoing an expensive and relatively risky genetic treatment in Los Angeles ahead of the Dallas Mavericks game against LA Lakers last night.
Luka Dončić has joined the fundraising campaign in Slovenia, in which over €3 million was raised to send little Kris with his parents to Los Angeles for a very expensive genetic treatment not yet available in his home country.
Kris is a toddler from Slovenia who suffers from type 1 spinal muscular atrophy (SMA1), a serious genetic disease. If left untreated, the majority SMA1 patients do not reach the age of four, with recurrent respiratory problems being the primary cause of death. A new genetic treatment, Onasemnogene abeparvovec, has been developed and approved by the USA Food and drug administration (FDA) in March 2019, but is still awaiting its approval from the European and Japanese authorities. The price of Zolgensma, which is a trade name of the drug, was set at $2.125 million (approximately €1.942 million), which makes Zolgensma the world’s most expensive medication by far.
Since the drug has not yet been approved in Europe, it is also not part of the health insurance system. For European patients, the drug is therefore available in the USA and at their own expense. The drug is only administered to children under 24 months of age and the disease develops fast, so Kris did not have time to wait for the drug to be approved in Europe and included into the health security system there.
Dončić met with Kris and his family at the basketball court, just before his team beat the LA Lakers 114:100.
