My autobiography ‘Surviving hemophilia,
a roadtrip through the world of healthcare

Now available

In 2021 a Dutch

version will follow

Mid of August 2020, my autobiography ‘Surviving hemophilia, a roadtrip through the world of healthcare’ will be published.

 

For more information, see: www.survivinghemophilia.com. On this website the book can be pre-ordered. The price will be € 25.-, postage excluded.

 

The autobiography is edited by Annemarie de Knecht – van Eekelen and with a preface from Marcel Levi, Chief Executive University College Hospitals London (UCLH).

Description


This book tells the story of Cees Smit, who was born with hemophilia A almost seventy years ago. No one ever expected him to survive long into adulthood, much less old age. He survived all stages of medical innovations, with both highlights and drawbacks. Today he is a lobbyist for patients’ rights and the improvement of patients’ position in the healthcare system.


One of his major concerns is the large-scale trade in human blood plasma—a topic he has discussed in various publications since 1979. Amidst the COVID-19 pandemic, this book has even more meaning, urging us to return to the traditional ideals of altruism, self-sufficiency, unity, and solidarity.


This story is a tribute to a large group of professionals who have supported him, including doctors, nurses, friends, and family. It is an homage to the wonderful people he met during the AIDS crisis—most of whom have since died. It is for them that this history of hemophilia, hepatitis, and HIV is written.


Marcel Levi, Chief Executive of the University College London Hospitals, writes in his foreword to the book: ‘Cees Smit’s story is extremely relevant […] the story warns us that caution should be exercised because unexpected side effects can have disastrous consequences. It is also a stark reminder that commercial value and the pursuit of profit are not always in sync with the interests of sick people.’

DE ZORG ONZE ZORG  -  DE MACHT VAN DE PATIËNT



In May 2018, our latest book 'De zorg onze zorg: de patiënt aan zet' was published.In English, the title would be 'The care our care, it's the patients' turn'.

 

Earlier in September 2015, our book 'De macht van de patiënt, baas over je eigen ziekte' was presented. The English title is 'The power of the patient, boss of your own disease'.

 

Unfortunately, there are no English versions of these books available.

 

All together, in these two books Annemarie de Knecht - van Eekelen and Cees Smit describe the position of the Dutch Patient Movement in a pentagram with four other stakeholders in the health care arena, namely health care providers, health care insurers, the government and science & industry.

 

Almost all developments within and between these five stakeholders group are described for the period 2012 - 2018.

 

Although the mantra is 'The patient central', the conclusion of these two books is that the patient movement in The Netherlands - together with the healthcare providers - lost position in the health care field. Health care insurers and the government have gained the power to influence the system in the last ten years.

 

So, therefore, the patient movement needs much more countervailing power to stand up for the interests of healthy and unhealthy citizens of The Netherlands.

 

A pdf of 'De zorg onze zorg' (2018) can be found here and the ebook here.

 

Hard copies of the book can be requested at: marketing@sanquin.nl

 

You can download 'De macht van de patiënt' the pdf here or the ebook version of the book here.

 

From 'De macht van de patiënt', there are no hard copies available anymore.

 

For other information on the book(s) or presentation requests, you can contact: info@smitvisch.nl

EEN ZELDZAME ZIEKTE, JE LEEFT ERMEE

From the earlier books we wrote, you can find downloads below.

 

It concerns the Dutch publication from 2013 with the title 'Een zeldzame ziekte,
je leeft ermee. Hemofilie als voorbeeld: lessen uit het verleden, opties voor de toekomst'.

 

In English the title would be 'A rare disease, it's your life. Hemophila as an example: lessons from the past, options for the future'.

 

The cover of the book is showed above and especially the last chapter is dealing with the discussions in the Netherlands on the high price of the orphan drugs.

 

Hard copies of this book can be ordered at marketing@sanquin.nl

 

You can download ‘Een zeldzame ziekte’ here (pdf) or the ebook version of the book here.

BOOKS ABOUT AGING

Between 2007 and 2012, I wrote together with others several books on the issue of aging with chronic diseases.

 

It started in 2007 with the publication of 'Aging with haemophilia', a co-production with Annemarie de Knecht-van Eekelen and Evelien Mauser-Bunschoten. 

This book is especially written for medical and paramedical personnel.

 

The year after, in 2008, this was followed by an adapted text in Dutch for older haemophiliacs, called 'Ouder worden met hemofilie (Getting old with haemophilia)'.

 

                                                                    As a consequence, the Dutch Aids Foundation
                                                                    asked us for a similar book on the issue of 'Oud
                                                                    worden met hiv (Getting old with hiv)'.

 

                                                                    A large group of professionals wrote chapters
                                                                    for this book and it was edited by Annemarie de
                                                                    Knecht-van Eekelen, Kees Brinkman, Kees
                                                                    Rümke and Cees Smit.

 

                                                                    This book was published in 2009 and it is
                                                                    mainly for medical professionals and
                                                                    policymakers. A summary of this book in
                                                                    English became available during the
                                                                    international aids-conference in Vienna in 2010.

 

                                                                    You can download it here (pdf). This text has
                                                                    not been printed on paper, but it appeared as a
                                                                    USB-stick in a creditcard format.

GENEVA MOVIE

In our recent books, we often mentioned the growing number of people living with one more than disease. This is called comorbidity or living with multiple chronic conditions (MCC).

 

In May 2019, I spoke at a symposium on MCC held at the World Health Assembly in Geneva, Switzerland.

 

On the right you can find my presentation as well as short video introducing the topic of MCC.

FUNDAMENTAL RESEARCH

In the publication 'Fundamenteel onderzoek en patientenorganisaties, een verrassende combinatie', you can read about surprising results when fundamental researchers and patient groups are working together.


This publication was formerly part of participatiekompas.nl and can now be found here.


You can download the PDF of this book here.

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