The story of Rositsa
I’m Rosi and I’m a 22-year- old CF warrior from Bulgaria. In 2018 I was put on the waiting list for a lung transplant. Till 2017 most bulgarians were undergoing this surgery at the Vienna hospital as the procedure cannot be performed in Bulgaria. The contract however expired and was never renewed. Bulgaria has also no access to the gene therapy for CF. Not even the oldest cf modulators from Vertex are available here. Only some kids had access to Kalydeco and Orkambi but no one above 18. There was a problematic regulation allowing innovative therapy only to kids and I was denied the life-saving Kaftrio( Trikafta in the USA).
With covid 19 in the game and the whole lockdown my health condition was deteriorating and I ended up with lung function as low as 14%. I had to do something, I couldnt bear the thought of dying in front of my parents eyes. The didnt deserve this and I had to fight.
So I went on the national tv and explained how I was denied access to this drug from the national health insurance fond and how desperately I need Kaftrio to save my life. The reaction from the society was immediate. People know better than to trust the authorities for a solution. My friends launched a fundraising campaign that received massive support from the bulgarian people. This is the hardest thing I’ve ever done in my life. I disclosed my illness in front of everyone and it made me so vulnerable. Till this moment no one except my family knew about CF. For the first time I felt relieved of the feeling I need to hide myself and better things really did came. I managed to fundraise for two months supply of Kaftrio! This is a huge amount of money for a drug even without the burden of the global pandemic. I started T on 18th of December and I feel so much better. Now, one month after starting I experienced so much benefits – increase in pancreatic function which resulted in weight gain, end of nasal congestion and  most of all easier breathing! Every day I wake up feeling grateful for what happened to me in December. Kaftrio was the best Christmas present and my New Year’s miracle. I will be forever thankful to the people that showed me their support and saved my life.Â
In the meantime driven by the constant media attention I generated, the health authorities finally started operating. Due to special pandemic legislation I’m now given three months worth of this life-saving drug. Even though the course of the treatment is not usually stopped after three months I feel this is a big victory for me. I fought not only for myself, but for another cf patient. A 32-year-old mother of two kids, who is also on the waiting list for a transplant is receiving this miracle drug. I’m proud that I showed the authorities that people from east Europe also have right to access new innovative treatments. I set e precedent by being the first adult starting a cf modulator in Bulgaria and this I appreciate higly. I won’t stop till this miracle happens to all bulgarians eligible for this kind of drugs. I am myself hoping to continue receiving Kaftrio after these three months have passed and believe better days are coming