Please note: While some information will still be current in a year, other information may already be out of date in three months time. If you are in any doubt, please feel free to ask.

CF Twin babies

I have a case of CF in the family. These twin girls were diagnosed right after birth, and have had a rough first 6 months.
The parents are a bit disappointed at the very sparse specialized care available in the country and are starting to consider getting the girls to some other country with a better health network.
Is it possible for them to use the medical facilities in another EU country, and under which conditions would they be allowed to do that?
Hope you can help. Thank you very much.
Sorry for the delay in the answer but I was getting some advice on your question from European colleagues. I hope the answer below addresses your question.

Generally speaking, every patient can have himself/herself be treated in the country of his/her choice. But normally this means that he/she is treated in a hospital in that country as a private patient and has to pay the costs accordingly.

For members of a EU state there are particular rules. If treated in the foreign countries of Europe (if there is a bilateral agreement) the health insurance might reimburse certain costs. Usually, these are the expenses which would incur if treated in the home country.

For your family with twins this means:
You have to make a request to your home health insurance for coverance of the costs for treatment in the foreign country of Europe. For this purpose you have to indicate where the treatment will be obtained and what costs will potentially be incurred. It is our opinion you should ensure that coverance of such costs is granted before going to the foreign country for treatment.

However, the granted the amount does not usually cover all expenses, so that a certain amount would have to be paid by your family on a private basis (unless they have a private complementary insurance which would cover such type of costs if applicable at all).

In most cases, the costs arising at the hospital of choice (mentioned in the request) have to be paid on a private basis first and then will be (partly) reimbursed after the treatment when being back in the home country.

In German hospitals the treatment will only be provided if the coverance of the costs can be proven in writing or if a down-payment in cash is made.

For these reasons, an enduring treatment of Cystic Fibrosis in a foreign country is certainly problematic. Conceivably, your family could present themselves at a CF center on an advisory basis asking for a precise treatment recommendation which then could be realized in the home country. But this also would have to be granted by the health insurance in the home country beforehand.

We hope this inofrmation is helpful and wish you and the family with the twins all the best in the future.

Best regards,

team of ECORN-CF