Cees Smit

It must have been about 25 years ago that I met Cees Smit for the first time. I had just started in 1995 as the Executive Director of the European Association of the Plasma Products Industry. A long name with a history that I will explain at another moment.

Cees Smit is a special individual who taught me one the first and important lessons around hemophilia. He taught me to talk about persons with hemophilia and not about patients. This immediately brought the message home and helps you to respect persons with a condition without stigmatizing them!

Cees Smit is a person with hemophilia A and an individual you cannot forget. At a certain moment in his life he received an experimental treatment that stopped his growth development and that is a personal attribute that you cannot miss. I can truly say that what he misses in length, he more than compensates that with drive and focus.

Cees recently published a book called ‘Surviving hemophilia” in which he very openly describes his “road trip through the world of healthcare”. The book is well written with the professional help of Annemarie de Knecht – van Eekelen. Together they have published several books. I was very impressed with the openness how he went into many very personal details of his life.

The book provides a good perspective from someone who grew up with hemophilia A with a limited life expectancy. Now after reaching almost the age of 70, Cees gives an unique perspective what he had to go through and experienced.

The book with a personal message: “ Ondanks de meningsverschillen veel leesplezier” or in English “Despite the differences of opinion, a lot of pleasure while reading”.

He may have thought so, but the differences were not as many as he thought.

Cees has an outspoken view on the compensation for plasma donors. He strongly believes that all donations should be voluntary unpaid. This is where I have a different opinion especially since the discussion on this topic many times becomes political.

In no way do I want to diminish the terrible events that happened in the 80’s, when so many persons with hemophilia were infected with HIV through the use of Factor VIII concentrates, Many times I was asked what happened and how to avoid this. These were not easy conversations but important to have. I always said that I cannot change what happened in the past, but that I can help to create a better future.

Though I fully understand after reading the book where Cees is coming from, I do believe that an opinion must be based on a combination of lessons learned from the past, but also should look forward how to make thins better. Only looking backwards is like driving a car by looking in the back view mirror.

In his book he mentions the former Minister Professor Els Borst-Eilers. She was a hematologist by training and a very competent Minister for many years. Her life ended abruptly through the criminal act of a mentally disturbed murderer.

I have a good example how political it can become. While Professor Borst was Minister, I had a meeting with her in her room with several other individuals. At a certain moment she said that she knew from personal experience that it is important that a plasma donor who comes back frequently, should receive more than just a compensation for travel expenses.

Later that year she repeated the same message in a meeting with the Health Committee in the Dutch Parliament when she explained what the priorities would be when The Netherlands would be the Chair of the European Union the year thereafter.

In January of the following year she said it again for the third time in a meeting with the European Parliament in Brussels.

Shortly after that, the official minutes of her meeting with the Dutch Health Committee were published and now her statement was available in written form. I reported that in a newsletter for the plasma protein industry. Oh boy, that started something. I received an angry letter from the legal department of the European Commission telling me that I had to correct the information because “I had misquoted the Minister”. That was not true and I did not change anything.

These memories came back while I was reading his very personal book that I can recommend to anyone who wants to learn more how Cees is able to use his experiences to guide other persons in the world of hemophilia.

I wish Cees and his wife Herra a wonderful life while enjoying painting!

Jan M Bult, august 2020