Michiel Coppens: Supporting Better Hemophilia Care in Suriname
Michiel Coppens, Internist Vascular Medicine of Haemophilia Treatment Centre at Amsterdam UMC, Treasurer and Chair of the Working Group on Thrombosis and Hemostasis at NVIVG, shared a post on LinkedIn:
”Back in Surinam, South America, for our periodic Hemophilia mission.
Started back in 2009 by Dutch-Surinamese pharmacist John Tjong Tjin Joe.
Inequity of access to care remains the most important global challenge in care for persons with bleeding disorders.
Where in high-income countries persons with hemophilia are benefiting from the ‘Age of Molecular Marvel’ with ultralong acting factor VIII, non-factor replacement (including next generation molecules in development), re-balancing therapies and gene therapy, lower-income countries still struggle with adequate treatment of bleeds and installing prophylaxis.
After the formal Amsterdam UMC and Academisch Ziekenhuis Paramaribo twinning, Surinam became eligible for the World Federation of Hemophilia / Fédération mondiale de l’hémophilie Humanitarian Aid Program that allowed the first persons with hemophilia to start prophylaxis in 2021.
The first Surinamese children to reach adulthood without significant arthropathy are now growing up.
In spite of these achievements the differences with high-income countries are still large.
We remain humbled to be part of this mission enabling us to try to help persons with hemophilia in this country that has taken a very warm place in our hearts.
Yet, our efforts to improve care by coming here do not bring these newer hemophilia treatments to such countries at this time.
So also consider this a call to all pharmaceutical companies producing hemophilia therapies: aren’t you making enough profits in high-income countries to let your heart speak to help out persons with hemophilia in low-income countries that would also immensely benefit from these newer products?”
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