Karolis Schröder, 18, from Heby must take medication every six hours for nephropathic cystinosis. Region Uppsala has denied him the approved long-acting treatment Procysbi due to its cost.
Karolis Schröder was born in Lithuania and adopted to Sweden at age four. He received the nephropathic cystinosis diagnosis after it was misinterpreted at the orphanage. Only ten people in Sweden live with the disease according to Socialstyrelsen figures for 2025.
He is currently treated with Cystagon that must be taken every six hours. The new medicine Procysbi, taken twice daily, is approved in Sweden but Region Uppsala will not cover the cost. The cost is approximately ten times higher than for Cystagon.
Social Minister Jakob Forssmed has stated that the government is investigating a new financing model for such medicines. Västra Götaland Region has approved Procysbi for another patient.
