Organisations representing genetics experts, pediatricians and patients are calling on health minister Edith Schippers not to act hastily on the health insurance council’s advice that expensive medicine payments should be scrapped.

They were reacting to advice given by the council on Sunday that payments for medicines used in the treatment of two metabolic disorders should be removed from the health insurance package.
The CVZ said that although the treatment does have an affect, their cost is too high in comparison with the results they deliver.
The medicine in question is used by patients suffering from the rare Pompe disease and Fabry disease. Annual treatment for one patient costs between €200,000 and €700,000.
Happy
The organisations have reminded the minister that she recently said she was happy with the way payments for expensive medicines is dealt with. ‘The patient with a rare disease has the right to equal treatment as a patient with a more common ailment,’ she wrote at the time.
According to press reports, it is highly likely Schippers will talk to the manufacturers about the cost of their medicines. At the moment, there is a big price difference for treatment for Pompe and Fabry in various countries.
The reports did not say if the Netherlands pays more than other countries.