Parents Report Ongoing Formula Shortage Crisis for Children with PKU

Nearly a year after the import of a crucial medical formula, Phenyl-Free, was halted for children with the metabolic disorder Phenylketonuria (PKU) in Israel, parents report that alternative formulas are insufficient and causing significant distress. Families describe children experiencing hunger, nausea, behavioral changes, and unbalanced metabolic levels, with some refusing the substitutes altogether.

Parents argue that the Ministry of Health's assertion of only two children struggling to adapt does not reflect the broader reality they are facing. They are seeking urgent solutions, with one father requesting a meeting with the Ministry of Health's Director-General to address his daughter's persistently high phenylalanine levels. The families are also advocating for the inclusion of Sapropterin, a medication used internationally for PKU, in Israel's national health basket, noting it was previously rejected due to cost.

Personal accounts highlight the severity of the situation. One mother shared that her daughter, who previously thrived on Phenyl-Free, now refuses alternatives, leading to uncontrolled eating and abdominal pain. Another parent reported their son's phenylalanine levels have doubled since switching formulas, accompanied by increased irritability and aggression. Some families have resorted to personally importing the original formula at a significant monthly cost.

The Ministry of Health stated that there is no widespread shortage of medical food for PKU patients in Israel and that most patients are adequately served by existing alternatives. They acknowledged known difficulties for two patients and are working with health funds to find tailored solutions, including exploring personal import options. The Ministry also announced that an additional specialized food has been approved and is expected to arrive soon, which should address the needs of those struggling with current alternatives.