Interview with Cees Smit, author of ‘Surviving hemophilia’

Cees Smit is not only a 70-year-old man with haemophilia, he is a renowned patient-advocate, a writer, a ‘survivor’ and one of the founding pillars of the EHC community. In his latest book Surviving hemophilia we are told his story, the one marked by the tragedy of HIV, hepatitis C and tremendous changes and crises in the healthcare world. His book bears historical value; it serves as a timeline for the evolution of treatment options for hemophilia and the emergence of the European patient advocacy. It is also a tribute to many wonderful people Cees met during the past decades and to those who died because of AIDS.

We met Cees virtually to discuss about his latest book, his writing and his ‘road trip through the world of healthcare’.

On resilience, acceptance and strength

Your book is a testimonial of the numerous hurdles and crises faced by the haemophilia community in the past decades. Yet, after all these tragic events, you still demonstrate an incredible strength and resilience. How would you explain this?

 It is quite difficult to answer where my strength comes from. I heard from many people who read the book that I was frankly and openly against the healthcare providers and pharmaceutical industry and many people approved and supported my position. Some even said that I had the right and all the reasons to be even more angry.

I have thought about it for a while, especially when working on the book. I also came to realize the long gap between the moment HIV became an issue in the hemophilia community in 1982 – 1983 and the moment when it became a more public issue with the request for compensation in the community around 1992 -1995 worldwide. It took around 12 years! 12 years is a long period. For me it meant a long period for accepting what happened and reflecting on the events, also facing the resistance of the government on providing compensation. In the end you more or less learn to deal with the time. I think that at least for my generation, for all those who were lucky to survive, we maybe got the time to accept more or less the situation.

We learn from your book that you were skeptical about psychological support, even in the most difficult situations, until you attended a workshop that was a life-changer: “I came back as a different person as noticed immediately by people around”.

Indeed, I went to a psychological support group, initiated by one of the students of Kübler-Ross, which helped me a lot. That experience taught me to accept the situation by meeting people from different backgrounds who got infected with HIV. I learned their personal stories, from a totally different background: a homosexual one, a drug-addict or someone who was in prostitution and mothers. Seeing the similarities between all these lives and tragic circumstances gives you new perspectives and you learn to live with your burden, without becoming too cynical or too bitter. You just accept the facts of life and you go on and have a positive attitude, not only for yourself but also for the sake of your partner, children and grandchildren. My grandchildren don’t know about all those things yet and they just know that they have a shorter granddad than the others[1]…and when you receive a treatment that works and lasts, there are also days when you just don’t think about your condition. That is also part of the gradual building of this resilience.

Surviving hemophilia is not only about haemophilia, it is also about your life with 2 other ‘H’ s – HIV and HCV. And here again, when reading your story, we witness incredible resilience and confidence, as in the saying ‘what doesn’t kill you makes you stronger’. But do you perceive it in the same way?

Having HIV was certainly experienced differently by a person with hemophilia than someone who didn’t have a rare bleeding disorder, as we, haemophiliacs, were used to live with a disease, which by the way was untreatable in the past. Maybe we had a stronger belief in the future of medicine.

I also think that some people with haemophilia and HIV had an attitude of ‘survivors’, meaning that we survived haemophilia when it was untreatable, so maybe we could also survive HIV? I didn’t see many people in the haemophilia community who would stop working, or living their daily life because they were diagnosed with HIV, even though it was perceived as a kind of a death sentence in other HIV groups.

Of course, I knew several people who had immediately stopped working, they wanted to do nice things before dying, so they made much more abrupt changes in their lives. While many people with hameophilia were used to ‘interruptions’ in their lives, because for example, they had a bleed or for any other reason. You just learn to live with a chronic disease.

Obviously, those who survived are still dealing with many problems because of HCV and HIV, but maybe this group of ‘survivors’ could do so because we knew how to adapt to a life with uncertainties from the early haemophilia period. Maybe that is something we take with us for the rest of our life.

On advocacy 

One of the major takeaways of the book is the historical framework to the numerous crises and hurdles the haemophilia community underwent during the past decades not only in Europe, but even on the global scale.

I was active in the haemophilia community before HIV and HCV became a problem. I also witnessed what happened in the EU, USA, Japan and I thought that we needed to overarch all these different stories and connect all the pieces together to provide people and their relatives with a historic background. I read a lot of books about haemophilia and HIV, maybe not so many about HCV, and they were mostly country- or people- specific stories. Surviving hemophilia connects different parts of the world, maybe because I was active and travelled a lot and met many wonderful people to whom I dedicate this book. They inspired me to go on for advocacy and to support those who contracted HIV and HCV.

You have been – and still are – a strong advocate for haemophilia patients. Could you tell us more about the hurdles you faced in your initiatives, especially during the HIV crisis?

When the whole situation of compensation started in the Netherlands, I already was partially convinced that the medical community was not necessarily to blame for the tragic situation with HIV and HCV, as we all in our personal and professional lives accept some risks. Therefore, I struggled with the idea to go to the court to accuse the doctors who had treated the haemophilia community. I rather proposed that the compensation came from the governments, because the government is responsible for the provision of safe and reliable blood transfusion system. This idea was also later adopted by the board of our association.

However, the request for compensation didn’t come easily and immediately after the emergence of HIV contamination. We first experienced many practical and organisational problems, we had to set up supporting services, and then came the request for compensation, but mainly for very practical reasons: people couldn’t afford their rent because they lost their jobs and consequently income or they wanted to have guarantees for their family if they died because of HIV. About 90 %of those who were infected in the 80’s died, so I am in the ‘lucky circle’ of the remaining 10% who are still alive.

The first requests for compensation were for daily living purposes and allowances for the families who were left behind after the death of a person with HIV. Only much later in the process, and maybe under the movement of the US haemophilia Community, requests for the compensation of damages done by the industry came up.

Your investigational and advocacy efforts are still ongoing, especially when you cover the HCV problem in the book…

 I make a strong plea in the book for an international inquiry into the background of what I discovered and described about HCV. I was shocked to discover that there had been numerous warnings already in the 60’s and 70’s from eminent healthcare specialists addressed to politicians and other healthcare professionals about the problematic plasma collection techniques. These alarm bells were ignored and the whistleblowers put aside. I found in the archives that many hematologists (including Judith Pool) had issued warnings about the risk of HCV in the 70’s and it is shocking to realise that these warnings were neglected. The consequences we know are not accidental, they were predictable.

On the writing process

How did the idea of writing Surviving hemophilia come to you?

The main motivation to write Surviving haemophilia came from one of my previous reading, a book I read 5 years ago.  It was written by a friend of mine, a story of a life with haemophilia and HIV and hepatitis C.  It was his own personal story and also his ‘coming-out’ about HIV after living with it for 35-40 years. When I finished that book, I felt like there was more to say, especially about the background, to explain how and why all this happened, that was my motivation.

Please tell us more about the backstage work and the process of writing. All the events you describe are exceptionally vivid and detailed after all those years. How did you proceed?

I haven’t written down anything in a personal diary during all those years. The events that happened and described in my book are still lively present in my memory. I also used my former articles from the 80’s and 90’s which I published in the hemophilia journal and went into the archives for new material. My co-editor, Annemarie de Knecht, who is a medical historian, checked everything I wrote, she corrected me when my memory failed and she also inspired and encouraged me to speak more about my personal experience. After drafting the first 4 chapters, my first readers advised me to focus more on my own history and not about the whole history of hemophilia. There were people who looked over my shoulder and corrected me form the beginning, so after a year we started to rewrite all the material again and the book was ready in about 2,5 years.

What would be your final word and maybe your wish for the future of the haemophilia community?

I believe that the main wish is to see the community grow and resist. The problem we are facing is all about staying together, being part of a united community. People do not commit themselves so easily nowadays, as information is made available and accessible on the Internet. I believe in the future It will become difficult to attract enough members to the societies to do what they are meant to do.

Another wish would be to make treatment available for the 75% who still do not have access to treatment options. The new therapies are the luxury of the developed world and we have to look to the reality of those who are not treated. And one of my pleas, as expressed in the book, is to make the ‘older-generation’ treatment options available to those countries where no treatment is to be found.

Thank you, Cees and we are looking forward to your next book!

Well, I’m interested in the stories of relatives of people who died because of haemophilia, HIV and HCV. What has been the impact of all this on the widows, (grand)children, on thebrothers and sisters in their life after all these decades. As we now see in the UK with the Fatherless Generation who started an Inquiry into the causes of HIV and HCV almost fort-fifty years later. People want answers, but I’m intrigued now by these background personal stories and maybe that’s something for a new book or a documentary. Therefore, people can contact me and let’s see if this will result in a new book.

[1] Cees was treated with DES hormone during his childhood, which had devastating consequences on his growth, which stopped at 1,45 m. More information and context on the use of DES for haemophilia in late 40’s is described in Chapter 1 of Surviving hemophilia.

Cees picture by Marieke Duijsters