Rare Disease Blogs

Note: this is an update to a previous blog post

First of all, the chairman of the Dutch Health Care Insurance Board (CvZ) reaffirmed in a journal that his Board judges the effectivity and therefore also the cost-effectiveness of the discussed therapies for Pompe (except the classical variant of Pompe among babies) and Fabry as insufficient. Furthermore, CvZ sees it as its task to open the discussion about a well-balanced insurance package for the Dutch people. It’s therefore, that they use among others the QALY instrument as a tool to formulate the content of this package.

Secondly, the Dutch Minister of Health stated as her opinion – given during the Olympics in London – that she want to go on with the reimbursement of these medications for rare diseases if there is enough proof that it is working. If that evidence is clear, she wants to discuss with the pharmaceutical companies that are involved with these two diseases the prices of their products.

The Fabry researchers of the Academic Medical Centre (AMC) in Amsterdam asked the Minister of Health in a letter as well as in a newspaper article, to judge the value of these products in a European context. The Dutch patient population is too small to base proper judgements on, so therefore they stressed once again to go European. Based on a European evaluation, a proper price for these medicines could then be settled.

The Dutch Health Care Insurers (ZN), stated as a fourth mark this week, that they want to go on with the reimbursement of the Pompe and Fabry drugs. Also because this policy is part of a European wide policy to stimulate research in rare diseases as well as the production of drugs for people with rare diseases.

As a fifth landmark, the former Minister of Health came today with a plan to work much more efficient in the health care sector. In this way enough money can be saved to guarantee the growth in the health care sector as a consequence of technological innovation, ageing and so on. There are a number of people in The Netherlands that believe that the privatization of the health care insurance market is responsible for its steady growth in the recent years. Because of the markets, many care delivers are compensated for their production growth instead of delivering justified and efficient health care.

All these developments are discussed broadly in public and in politics, also because in the Netherlands elections will be held on September 12. Health care is now one of the dominant issues in the political debates before the elections.

On September 5, the VSOP, the Dutch umbrella organisation for people with rare and mostly also genetic diseases will organize a conference on the content of the health insurance package and its significance for people with rare diseases. followed by a broader discussion with all stakeholders and politicians (see www.vsop.nl).

For a further update on this situation read this blog post