I moved from Romania to Sweden on Jan 15th with my husband and 4yo daughter with CF. She had a very rough start, part because of CF, part because of bad hospitals. I had trained myself with her dr’s consent to do port flushes, surgical enemas, tracheal aspiration, anything to stay out of the hospital. We had spent her first 10 months straight in one and barely came out alive. No Orkambi, let alone Kaftrio. Kalydeco had been approved in 2021, but there are only 3-4 patients for it.
I was afraid for her life so we decided to move to Sweden. We knew Orkambi was approved. We also knew Kaftrio wasn’t, but even her doctor said “Sweden is better even without Kaftrio”.
In Romania many times you have to really fight for something to get it, even though you are entitled to it. That is what the CF community learned in the past years. Media, news, memoirs to the ministry, politicians, it was not enough. So before moving to Sweden I decided to try one more thing, a protest. I wasn’t sure people would come, but they did. When the government heard about it, they finally approved Orkambi, exactly the day before the protest. But that didn’t stop us. The process had started 2 years ago and kept getting stuck because of corruption, lack of interest/care or changes in ministries.
The patients and parents kept protesting every Thursday for 9 weeks. During that period, a young boy lost his life. Another young girl sued the state and won Kaftrio. After her, another did the same and won again. So yesterday, March 23rd, Kaftrio was approved in Romania. The state was “cornered” so to speak. That is how such major things are done there, you have to fight hard.
And now we are in Sweden. No Kaftrio, hoping to get Orkambi. How did I feel yesterday? Weird. Frustrated. Alone. Happy. Hopeful. Scared. Void. Even though we are considered a “poor country”, we had a good life, family was close, nice climate, mountains. But that mattered when Ada was healthy.
When she was sick nothing mattered anymore, except the fact that we felt trapped in a bad healthcare system. But now it has Kaftrio. Could she live a good life in Romania with Kaftrio helping to avoid the bad hospitals? Perhaps.
Could she live a good life in Sweden without Kaftrio? Perhaps. At least she would have more chances to get a transplant in Sweden. But I honestly never would have thought Romania would approve Kaftrio before Sweden.
I admire the profound, smart and composed fight that the CF community here in Sweden is doing. Back home it was mostly the parents fighting. I don’t know how an outsider like me can help, but I am here and support this 100%.
Ja till Kaftrio!”
/Ana Maria Comsa
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Den svenska myndigheten Tandvårds-och läkemedelsörmånsverket TLV har sagt nej till att den nya medicinen Kaftrio, ska ingå i högkostnadsskyddet. Beslutet innebär att svenska patienter inte får tillgång till medicinen. Säg #JAtillkaftrio