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.’
Hemophilia is one of the most well-known rare diseases in the world. It is a genetic disease, where men have hemophilia and women are carriers. A person with hemophilia lacks the genetic information to produce one of the proteins needed for blood clotting. Most hemophiliacs have a shortage of factor VIII, causing hemophilia A, whereas a smaller population lacks factor IX, causing hemophilia B.
In the mid-1960s, treatment with blood plasma containing high levels of the missing clotting factors became available. These clotting products are injected in a vein, which places high demands on product purity. A substantial proportion of the plasma available was contaminated causing the spread of hepatitis and HIV among people with hemophilia. Today, the threat of viral transmissions via plasma has been minimized, but hemophiliacs remain ‘the canaries in the coalmine’, being the first victims of any changes made to treatment options.
This book serves as a strong plea for European self-sufficiency in ‘red’ blood and ‘yellow’ plasma from voluntary non-remunerated donors. It is disturbing that today’s policy makers pay so little attention to the world of blood transfusion and plasma products. In a neoliberal market economy, the trade in human substances is too easily accepted.
CeesSmit_SurvivingHemophilia from Hans Meex on Vimeo.
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