Reactions to proposed decision
Because of the optimal accessibility of care for patients with congenital heart defects, Rotterdam and Utrecht were chosen by VWS at the end of 2021. Protests from other academic hospitals and their patient groups followed and the NZa did further research in the months that followed. On February 13, 2023, the minister took a proposed decision with a preference for Rotterdam and Groningen, without taking into account the arguments of optimal accessibility or future-proofing for patients. A large-scale campaign was organized; many patients and professionals from (the vicinity of) the UMC Utrecht objected. Nevertheless, the Minister of Health announced his final decision on April 13.
Legal action
Together with UMC Utrecht, the Princess Máxima Center sent a response to the ministry and issued a press release, announcing legal action. Both organizations will ask the court to overturn the minister's decision. The main reasons are that the successful pediatric oncology concentration will be largely undone and unclear criteria were used for concentration to two pediatric heart centers.
Pediatric oncology concentration overturned
The successful concentration of care and research for all children with cancer in the Netherlands at the Princess Máxima Center is being largely undone. Children with cancer at the Princess Máxima Center often require care from the pediatric heart team at the UMC Utrecht/Wilhelmina Children's Hospital. In total, this involves about 60 treatments per year. The care of these children is inextricably linked; it is not for nothing that a location next to a children's hospital with a specialized children's heart team was chosen at the start of the Máxima Center. If the pediatric heart team disappears from Utrecht, seriously ill children will have to travel to another location in the country where there is no oncology expertise for highly specialized and radical parts of their treatment. This entails great risks.
Unclear criteria for concentration to two pediatric heart centers
UMCU and Máxima Center are in favor of concentration of highly complex care. However, this decision by the minister is not in the best interest of the patient because it does not lead to optimal accessibility of care for patients with a congenital heart defect. The government did not use clear criteria for distribution beforehand. A much larger proportion of patients with a congenital heart defect will soon have to travel.
The minister's decision will not lead to optimal accessibility of care. Not only for the children of the Princess Máxima Center, but also for all children from the south and east of the country who need a heart intervention. The current situation with a pediatric heart center in Utrecht, inextricably linked to the Máxima Center, now guarantees good quality care for children with cancer and we would like to keep it that way.
Frequently asked questions
What do these legal steps mean for the children currently being treated at the Princess Máxima Center?
The minister has set a transition period of 2.5 years. So for now, nothing will change and we will continue to provide children with cancer all the necessary care at the highest level. Together with the UMC Utrecht/WKZ and our shared care centers in the Netherlands.
Why do children with cancer have anything to do with the pediatric heart center of the UMC Utrecht/WKZ?
Children with cancer often need care from the pediatric heart team at the UMC Utrecht/Wilhelmina Children's Hospital (WKZ). In total, this is about 60 interventions per year, most of which cannot be planned. This is the case, for example, if a child has a tumor in the chest cavity. Or if children, as a result of treatment, develop side effects with the heart and lungs. Or if children with cancer already had a heart defect and need anesthesia.
If this pediatric heart team were to disappear from Utrecht, these seriously ill children would have to travel to another location in the Netherlands for highly specialized and invasive parts of their treatment.
If this pediatric heart team were to disappear from Utrecht, these seriously ill children would have to travel to another location in the Netherlands for highly specialized and invasive parts of their treatment.
When will more be known about how this will proceed?
We don't know, at this time. In recent weeks, we have posted via this newsletter, our website and our social media as soon as more was known, and we will continue to do so when relevant.