Pompe and Fabry remain reimbursed

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The expensive drugs for the rare diseases Pompe and Fabry will still be reimbursed after this year by the basic health insurance, reports Minister Schippers to the House.Last summer the NOS unveiled a plan of the Healthcare Insurance Board (CVZ) to remove the drugs from their approved lists. CVZ had doubts about the effectiveness of the resources in relation to the cost.


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The cost for the drugs for a Pompe-patient are between 400,000 and 700,000 euros on a yearly basis. For a Fabry-patient the cost runs about 200,000 euros.

Negotiations with the manufacturers of the drugs resulted in a substantial price decrease, according to the Minister. How much the price drops is not published, since that is a condition, set by the manufacturers.

The physicians involved renewed their promise they would encourage proper use of the resources. This must be done by the further development of treatment guidelines and research into the factors that determine how well the drugs work in individual patients.

Furthermore, European coöperation in the field of rare diseases will be intensified, as doctors have long wanted.

Patients with Pompe disease are treated at the Erasmus MC in Rotterdam. The Amsterdam AMC is the center of expertise for Fabry disease.

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