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 gene therapy for CF.
I needed to do something for my health
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 Trikafta.
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 couldn't bear the thought of dying in front of my parents eyes. They didnt deserve this and I had to fight.
Talking about my CF on national tv
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 Trikafta 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 come. I managed to fundraise for two months' supply of Trikafta! This is a huge amount of money for a drug even without the burden of the global pandemic.
Trikafta has been my miracle
I started it on the 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. Trikafta 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. 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.
Fighting for others with CF
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 highly. I won't stop till this miracle happens to all bulgarian patients that are eligible for this kind of drugs. I hope I myself receive more than just 3 months of Trikafta and believe better days are coming
Have you (or a loved one) been experiencing any negative side effects from Trikafta?