A hot rare disease summer in The Netherlands « Rare Disease Blogs.

A hot rare disease summer in The Netherlands « Rare Disease Blogs.

A hot rare disease summer in The Netherlands

In The Netherlands it is a hot week with regard to rare diseases. On Sunday, the most important Dutch television news programme opened with an advice of our Health Insurance Board – CvZ – not to reimburse any longer the treatment of patients with Pompe (except the babies with the most severe type of Pompe) and Fabry. The cost-effectiveness ratio was too negative (they calculated for Pompe a QALY of 15 million Euro!). I really don’t understand this calculation, but for the moment I miss the background papers.
Based on the publicity that follows, there is wide support from the public and a number of scientists that this would be the wrong approach for people with rare diseases. The Dutch news programme also had it as its opening news on monday and tuesday and I expect also today because of a press release of the VSOP, the VSN and the clinical geneticists. Also there are a large number of newspaper articles, starring Maryze Schoneveld van der Linde.
The advice of the CvZ was confidential and would be discussed together with the comments from the relevant stakeholders on September 21, when the appraisal committee of CvZ will meet.
Note: for an update on this situation please read this post
Dr. Cees Smit was born with a rare disease, severe hemophilia. He has been a patient advocate for more than forty years and received an honorary doctorate from the college of deans of the University of Amsterdam in 2003 for his work on hemophilia, patient participation and biotechnology. He is also a Policy Advisor at EGAN (Eur Genetic Alliances’ Network)
Links:
Article on Website of Radio Netherlands Worldwide http://www.rnw.nl/english/article/dutch-health-insurance-body-questions-use-expensive-drugs
For further udpates on this situation read the following blog posts: Part II, Part III