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“This decision strikes the Belgian community of people with cystic fibrosis like a thunderclap. It is inhumane and unacceptable. The fact that there is already an agreement in all neighboring countries makes it all the more unbearable”, says d entry Stefan Joris, the general manager of the Muco association.
This reaction follows Vertex’s decision to cease negotiations on Thursday with the Minister of Health for the reimbursement of Kaftrio. However, the American pharmaceutical company had filed two files concerning a potential reimbursement of its treatment. The first at the end of July 2021, for people with cystic fibrosis aged over 12 with at least one F508del mutation, and the other in February 2022, for children aged 6 to 11.
In May 2022, the Minister of Health Frank Vandenbroucke assured, answering a parliamentary question, that a decision would be taken by July 2022 at the latest for the reimbursement of Kaftrio for those over 12 years old (with at least one F508del mutation).
However, the withdrawal of this file by Vertex implies that no agreement will be ratified in July and that the treatment will not benefit from any reimbursement, whatever the age group. This decision puts an end to an initial long negotiation process which should, in the event of a resumption, perhaps still take some time. “Our message to the negotiators is simple and clear: take responsibility, get back to the negotiating table and get a deal done. As soon as possible. People with CF do not accept another long process, full of uncertainty, of stress and despair? The wait has lasted long enough”, urges the ASBL.
On the side of the office of the Minister of Health, it is indicated that the file is however far from being closed and that an agreement is always possible with Vertex, in spite of this step aside from the pharmaceutical firm. “We are asking for reasonable negotiations. We are not yet at the end of the process and, therefore, we continue to work hard on this file.”
Cystic fibrosis is a serious and very often fatal disease that affects the cells that produce mucus, sweat and digestive juices. These fluids become thick and sticky and obstruct, in particular, the airways.
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