Support and state aid bring Jelgava girl closer to treatment

Donors have raised 150,000 euros of the 240,000 euros needed to treat Olivia, a girl from Jelgava, while a children’s hospital has begun negotiations with a US manufacturer to obtain the medicine, LSM reported. The state is also providing 30,000 euros in individual medicine compensation.

The State Medicines Agency has been instructed to negotiate with the manufacturer over the price and the possible inclusion of the medicine on Latvia’s list of state-compensated medicines.

Olivia’s case is unique in Latvia and across the Baltic states, as she is the only child with this genetic disease. To prevent her from becoming blind and paralysed, she must receive the medicine for the rest of her life through a system specially implanted in her head. The cost is beyond what her family can afford.

“We are indescribably grateful. People have been so responsive and helpful,” Olivia’s mother, Karina Rusecka, said. “There was hope, but now it is even greater. The sooner we start, the better, because every day matters.”

The Health Ministry has reviewed Olivia’s case and confirmed that the family is entitled to 30,000 euros in individual medicine compensation. However, the medicine is not included on the list of compensated medicines and has not previously been distributed in Latvia because the manufacturer has not declared a price, said Inese Kaupere, director of the ministry’s Pharmaceutical Department.

Parents must submit an application to the National Health Service requesting individual compensation. Even with the 30,000 euros, however, the funding would not cover half a year’s supply of the medicine.

Rūta Dimanta, head of the charity organisation Ziedot.lv, said the donations had made it possible to begin arranging the medicine’s delivery from the United States and its administration to Olivia.