We have become so used to it that we consider it quite normal that we can travel through Europe without passports and that in many European countries there is one currency. Trucks with goods do not have to stop; declaring goods has become a special activity. Services can also be offered in all countries without restrictions. Living in one of the 28 EC countries means free movement of people, goods, services and capital. That is nice. The English have not completely understood this yet, but fortunately the others have. Regularly I attend meetings where these 28 countries come together and that is why I understand it: within the EC context (I work at the central bank of the Netherlands) there are firm discussions about financially related subjects and again and again I realize that some of these countries threw bombs at each other over 20 years ago and that we all did this 75 years ago. Then we can certainly speak of an improvement when nowadays strong emotions are aroused by the structure of financial reports.
When as a Dutch patient you see a good treatment in Lisbon, it is impossible to get this arranged (apart from the resistance of some Dutch oncologists who think that they are the best or that as a patient you will have to accept that life is finite). You only get it done with a lot of money and that is something only few patients possess. If you are a Greek and you see an interesting trial in the Netherlands which is important for you, it is impossible to participate in it. Here as well there are so many obstacles that we cannot get it done to offer this patient a possibility for a longer and better quality of life with his/her beloved. The bureaucrats, politicians and lawyers have let it become so intricate that patients still have to deal with a procedure that originated decades ago and is not connected to what should simply be possible and has already been arranged in the foundations of our Europe for other subjects.
A short while ago I had a good and interesting meeting with someone from the pharmaceutical industry. When we talked about this subject, we came to the conclusion that free movement of patients in trials and treatments throughout Europe has advantages. Trials are more easily filled by the larger numbers of patients that are eligible for them and because of this the quality of the results will also improve (I told my discussion partner that those trials will have to be determined and designed by us patients; and mind you, we can do that, we are not stupid). Rare treatments can be concentrated in a few centers in Europe and thus the quality of treatment and research can be focused on. For example, in the Netherlands there are only a few dozens of patients with eye cancer and in Institut Curie in Paris hundreds of patients a year are treated.
Eventually we have got it done in Europe to let people, goods, services and money move freely. Why not patients for trials and treatments? Money plays an important role in this. The starting point has to be that the health care insurer of the country where the patient is a resident compensates for the treatments if they are registered treatments in the country where they take place and of course the industry compensates for the trials. As is the case now, only then across the borders. Money also plays a role when it comes to the costs of these treatments and trials. It is my conviction that the costs will go down, because that is always the case when the quality goes up. Let us not whine about difficulties and restrictions. They can be solved and others have done that before.
Rogier Koning · 22 september 2017 op 09:56
Nice clear explaination of were we should go in the future. Your message also showed me that my nobism-project setup as a clusterheadache patient could be really interesting. nobism aims on joining patients and let the collect real time data for research and better insights for specialists.
Unique about nobism is that its not only build to answer questions specialists and research have about patients. It gives patients the option to tell what they do to feel better. This way generating a unique view on patientsgroups and disease development, comparing any treatment option used.
Thomas Ruddy · 18 oktober 2017 op 10:21
How would you solve the problem of language barriers?