Between 5th-8th June, the 47th European Cystic Fibrosis Conference will be taking place in Glasgow, Scotland. The Right to Breathe campaign will be going along to engage with clinicians, highlight our demands for global access to lifesaving treatments, and hold Vertex Pharmaceuticals to account.
We will be amplifying the voices and stories of cystic fibrosis patients across Europe and beyond who still cannot access Kaftrio/Trikafta because of Vertex's sky high prices. One of those patients is 15-year-old Lukas Dimičiukas from Lithuania. Below is his story, written by his 18-year-old sister Akvilė Dimičiukaitė.
Most kids who live with cystic fibrosis, at around 12 years old, know about the human body as much as a doctor. This goes not only for people with CF, but also their family members. My name is Akvilė and I have a brother Lukas, he is 15 years old and cystic fibrosis was diagnosed for him when he was 3 months old. His respiratory function was inadequate, his lungs were blocked with secretions, normal gas exchange could not take place with the current lung infections and tests showed that these were already chronic at the time.
As my mom had to be around my brother all the time in the hospital, I ,3 years old at the time, stayed at home with my father waiting for my mom and brother to come back for at least a few days or even a week. From then on I had to “grow up” even more, because of the situation. For a kid, the hardest part is to not see your parent for a long time, but having a family member with CF I had to understand that my brother needed more attention at that time than me.
Growing up we moved out of the city to live in a village to have clearer air for Lukas. As I am now 18 years old and my stepdad is working a lot I have to take care of my other siblings while my mom goes to the hospital with my brother, because I know that they need less things to worry about, because the main thing in our lives is to keep my brother as healthy as possible. Most CF siblings are living similar lives as I am and by that they have to become more mature than they need to and even though it may seem to be a good thing, we can say that kids lose part of their childhood. I help my mom to take care of Lukas as a second mom, because my mom can’t always be by his side, for instance in school.
Other people don’t always understand why kids with CF have to be “different” than others, because they need to be taken care of everywhere when they can’t do it by themselves. The hardest part of that is to be strong mentally, because you can hear hurtful and mean things sometimes. Now Lukas isn’t in the worst shape of how his condition can affect him, but he is trying to live his life to the fullest and that is the best thing a person can do.
If Lukas would get Kaftrio our whole family would be really happy, because he could live a more independent child’s life, he could experience many more things in life compared to what he can do right now and also his health would probably become much better. It would make our whole family really happy and it would really change our lives almost upside down.