Friday September 21, 2012 the Appraisal Committee (Adviescommissie Pakket, ACP) of the Dutch Health Insurance Board (College voor Zorgverzekeringen, CVZ) discussed the reimbursement of the orphan drugs for Pompe’s and Fabry’s disease. The end result of a long discussion was that the reimbursement of the drugs will be continued. If this will be within the existing health care insurance package or through a new fund, is not clear. In a few weeks a more final decision will be made by the Board of Directors of CvZ. The decision of the Board of CvZ will go then to the Minister of Health and normally this advice will be followed by the Minister.
The discussion was opened by short and strong presentations from the side of the two patient groups and their treating physicians, professor Carla Hollak for Fabry’s disease and professor Ans van der Ploeg for Popmpe’s disease. The conclusion of both groups was quite clear: the medication works and it works well. The very well, prepared statements together with the presentation from Yann Le Cam, the director of Eurordis made great impression. Yann stressed the importance of European data collection to gather enough information to prove that the medication is effective. These presentations all together led to a change in the opinion and the conclusion by the Appraisal Committee that the medication should be reimbursed, also for new patients.
All patients with Fabry’s and Pompe’s disease will receive a statement from their respective patient groups this week about the conclusions of this meeting.
In an earlier advice, which became public at the end of July the Pharmaceutical Committee (CFH) of CvZ advised not to reimburse the medication (except for the classical variant of Pompe’s disease). This advice caused a lot of emotion among patients and this advice was followed a week ago with a new advice that the existing patients should get continuation of their treatment and not the newly diagnosed patients.
The end result of the decision making process within the Appraisal Committee is now that both groups will receive continuation of their treatment
Also related is the blog post “Argument of the Academic Medical Center in response to the preliminary advice from the Dutch Healthcare Insurance Board (CVZ) to stop reimbursement of Fabrazyme and Replagal“