Four-year wait wasted for cystic fibrosis patient in Latvia

Take note – story published 3 years and 7 months ago

Alise Kukaine, a patient with the condition cystic fibrosis, has quit the four-year waitlist for lung transplantation. During these years, Latvia has not managed to successfully join any organization that might make it easier to find a donor, Latvian Television reported October 10.

For four years, Alise and her family have waited for a call that a lung transplant is available and the operation can be done in Tartu, Estonia. The wait is over. Alise has stepped out. She is now a patient of palliative care.

"I am not on the transplantation list any more because my kidneys are bad. Doctors think I need a kidney transplant before the lung transplant. But with that, I would also need a pancreas transplant, as I have diabetes. That can be done neither in Latvia nor Tartu. Plus, money. It is impossible," said Alise.

"I put it down in writing. I have opted out of transplantation, dialysis, life support," said Alise.

Alise's father said the family is exhausted from all the waiting.

"Alise has been on the list for four years. Two girls who waited for lung transplant have died. It is great that the money has been granted, the State as if promises to pay for transplantation, but where? There is no way to do it," said Alise's father Didzis Kukainis.

Since 2018, Latvia has discussed joining Scandiatransplant -  the organ exchange organization for Denmark, Finland, Iceland, Norway, Sweden and Estonia. Back then, another patient Laima Liepiņa had been sent home from Tartu as Estonia had joined the organization and were not allowed to offer donor organs for Latvian patients. Laima died. Alise still had hope.

In 2018, Health Ministry's parliamentary secretary Ēriks Miķītis said that "the situation today is different and Latvia has no other option but to collaborate with neighboring countries."

Years later, Latvia still has not joined Scandiatransplant. The process has started, as last year Rīga Stradiņš University received 180 thousand euros to adapt their laboratory to Scandiatransplant standards.

Latvia unfortunately bears many lives that have been taken by delayed decisions in medical care. Baiba Barone died in Tartu after liver transplantation in Tartu, as she had waited too long for the State to start funding the procedure. In Alise's case, the procedure is theoretically funded but joining the organization that would make it possible practically has taken too long. Alise's life cannot be saved by transplantation anymore. 

There have been more patients like Alise, Baiba and Laima, whose names we do not know.

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