The boy suffers from Morbus Hunter, according to TT. The medicine the boy needs is estimated to cost 4 million kronor for a one year supply.
“This medicine would help the boy,” said Bernt Tonnby, a doctor treating the boy. “It was approved in the US and it will be approved in the EU. The boy is suffering everyday with this progressive disease. Without it he will mostly likely die in his 20s.”
Two of four children who have the sickness in Sweden were involved in a study with the new medicine. The child in Halland and one in Skåne were not involved.
If the child’s clinic were to pay for the medicine, its budget would dry up. The clinic’s boss turned to the politicians in the area for help.
They said no two times this summer due to the medicine not having been approved by Emea, the European Union’s drug administration. The U.S. Food and Drug Administration just recently gave the green light for the medicine, reported TT.
In Skåne, the FDA’s decision was good enough and the child there has received the medicine, reported TT.
Tonnby said he is convinced the reason for the denial is because the Council doesn’t want to pay, and added the child is suffering more with each day.
“I understand that they want to be careful because the medicine was not approved, but they, as all others, know it will be approved in Europe too,” Tonnby said, according to Hallandsposten. “They just see a chance to save a bit of money.”
The head of the Halland medical board said on Wednesday money was no the issue, adding that if the EU approves the drug before its deadline this December, Halland would pay for the medication.
“It was not a financial decision at all,” Eliasson told The Local. “We said no because the medicine has not been approved by the EU. We will meet again next Wednesday and reconsider our decision on the boy’s case.”