In 2022 it was forty years ago that in the Dutch newpaper ‘De Volkskrant’ the first article was published about the relation between hemophilia and aids through human plasma products. These products not only contained hiv, but also hepatitis C. The recently published book ‘Wat wij nog niet wisten’ (What we did not know) is filled with interviews with relatives of those who died because of their hiv and hcv infections and those who survived but still experience problems because of the long-term effects of these viruses. This book gives an overview of the backgrounds of these viruses and sketches also how policy makers acted forty years ago or neglected the problems like politicians did at that time.
The interviews have been held and written down by
Cees Smit, Henk Koetsveld and Annemarie de Knecht – van Eekelen (editor).
The book can be ordered for 20 euro at Academic Publishers Eburon (Eburon.nl)
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).
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.’
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.
Hard copies of the book can be requested at: firstname.lastname@example.org
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: email@example.com
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 firstname.lastname@example.org
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.
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.
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.