Emigration and CF: Transferring to Texas

Hello, my name is Anastasiia and my son, Timo, is a person with CF. We recently moved to Texas from Dublin where we arrived after leaving Ukraine because of the war last year. This is our story.

We started to plan moving to the USA nearly 4 or 6 years ago, when Tim was about 5 years old and when I got the first information about Kaftrio. I understood that Ukraine can't give even basic free treatment for its patients, so we need to move. My husband is an IT manager in a USA company, so we had a real plan.

In Autumn 2022 we received confirmation of relocating and started the visa process. Then the war started in February and we moved to Poland to be safe and continue our son's treatment. Then we received an invitation to the appointment in the Dublin visa centre. In Poland there were long queues and my husband’s employer looked for the fastest way to get us to the USA but the war and processes made it difficult. When we came to Dublin, we found that there was a mistake with that appointment. It was scheduled for another type of visa and we had to wait for an undefined time. Luckily, we met an Irish family that hosted us and helped a lot. We lived in their house for 6 month while we waited for a visa. The appointment took 5 months from when we arrived and then there was one more month to wait for visas and buy tickets and get organised.

The CF care my son received in the Dublin centre was at the highest level. He is stable so he didn’t need hospital treatment. We just visited the CF centre for checks, tests, prescriptions. All doctors and staff were very qualified and understanding. Also, I mentioned that the quality of medicines is better than in Ukraine. We have a very similar Irish health system in Ukraine-social insurance. The problem in Ukraine-it doesn’t have enough money to cover all promised by government services. CF medical help in Ukraine was very bad, but in the last few years it has got better and even the war. We have a strong patient community there and doctors-enthusiasts who really care about their patients. Thankfully to those doctors, my son is in good condition. Ukraine uses European CF treatments protocol and it’s not differing much from Irish one. But the opportunities of the system differ. The one complaint about the Irish system-is the long waiting time for specialists (not CF doctors, for example for paediatric endocrinologist the queue was more than 1 year!!!)

We received notice that our visa was ready and we moved. But before arriving in the USA, I checked which CF centres are closer for our place. Then I read reviews and ratings for those centres and also I found some information on social media. It was possible to choose which one we want but only in the insurance network from the health insurance.

When I chose the centre, I immediately wrote to them, informing that we are transferring from Dublin to Dallas, and would like to receive care in their hospital. I asked what I needed to do to make my son receive care there. First of all it was insurance. Actually it was a struggle to figure out what plan is better, what's the difference etc. We spent a lot of time speaking with HR, trying to select the best option.

The issue was that we couldn't get insurance without being in the USA and passing some documentation process. The nurse coordinator understood that and asked transferring documentation from Dublin hospital. In a couple days all documentation was sent. As soon as they received it, they scheduled an appointment. But our responsibility was to come to that appointment only with insurance. Thank God, all these factors came together and we succeeded in attending the CF doctor during our first month in The USA. In the hospital I received a lot of information about different support programs for basic medications.

I installed the mobile app where I can schedule appointments, get consultation, and all information about tests and visits is there.

Now, Tim is doing good at school. He goes for swimming, basketball and coding classes. He has friends here and I hope a happy childhood. We live in quite suburban Dallas and life is more quiet and calm, like for

Europeans. You can’t just leave home and go for a walk. You need to drive. But the place is nice, safe.

We are trying to travel, but there are long distances!! The USA is huge! Everything is bigger in Texas: cars, distances, houses, food and drinks. But this place is not as safe as they look. A couple weeks ago it was shooting in the mall in 15 minutes from us. And even if you are living in a good and safe place with great schools, you can’t feel fully protected from the guys with weapons. It’s a big problem here. However, we have a big Ukrainian community, attending Ukrainian fundraising meetings, and volunteering, like I did in Dublin a little bit.

After my son started Trikafta, I have a lot of free time. I haven't had that feeling since he was born. I can study, can have a full-time job, and stop worrying about his health every minute. It's a great feeling. I am finishing a software testing course and will look for job opportunities soon.

Actually, recently we had a check at the hospital, and I had some conversation about work for The CF Foundation. So cross fingers!

Cystic Fibrosis on the TV....

Our CF Advocates, Caroline and Rory, were recently involved in providing insight to the writers of new adult crime drama, Clean Sweep, on life with CF. Well done to the writers for an excellent portrayal of CF and to Aidan MCann, the young actor who plays Niall Mohan, a young boy navigating everyday life as a PWCF. The series is available to stream on RTE player.