Court to decide if Dutch insurers need to pay for U.S. treatment of seriously ill child

The court in Arnhem will handle an appeal case on Tuesday afternoon for the reimbursement of treatments for 11-year-old boy Gueko from Winschoten. He has been suffering from Acute Flaccid Myelitis (AFM) since 2016, a paralyzing disease that has made him completely dependent on a wheelchair and a ventilator.

His parents want to have him treated in the United States so that he does not have to be on a ventilator as much and can get some exercise again. “We also follow the advice of specialists in this regard,” says his father, Gert Jan. The child has already recovered temporarily from a previous treatment there, paid for through a public crowdfunding campaign. However, the insurer in question, which is willing to provide partial compensation, won’t fully reimburse this American approach because it does not meet certain criteria. A previous ruling in summary proceedings between the parents and the insurer did not yield anything for the plaintiffs.

The insurer, ASR, says it thoroughly assessed the issue and is not allowed to pay according to the Health Insurance Act because the effects of the treatment have not been proven. “It is a very sad situation, and that is why we have offered 100,000 euros out of leniency.” However, the family needs at least 350,000 euros, including for nursing assistance during the flight. According to the father, this is a requirement for someone who needs ventilation.

Defense for Children, which is not involved in the case, stresses that “the interests of the child must be a primary consideration” in such an issue. PVV parliamentarian Fleur Agema has asked outgoing Health Minister Ernst Kuipers questions about the matter. “Why is effective treatment of this rare polio-like viral disease for this boy at the Kennedy Krieger Institute, an internationally recognized rehabilitation hospital, not reimbursed or enabled?” the politician asked. The Minister said last week that he needed extra time to respond.