Parents Report Ongoing Formula Shortage Crisis for Children with PKU

Nearly a year after the import of a vital medical formula for children with Phenylketonuria (PKU) was halted, Israeli parents report that their children are still struggling with inadequate alternatives. The formula, Phenyl-Free, was the primary source of nutrition and a key component of the dietary treatment for children with this metabolic disorder, which requires a diet extremely low in the amino acid phenylalanine. Parents claim that the available substitutes are not being consumed by their children, leading to symptoms such as nausea, hunger, behavioral changes, and unbalanced metabolic values.

Families describe a desperate situation where children refuse the new formulas, experience physical discomfort, and exhibit distress. One father, Yair Sagie, whose five-and-a-half-year-old daughter has PKU, has requested an urgent meeting with the Ministry of Health director-general, stating that his daughter's phenylalanine levels remain high. He disputes the ministry's claim that only two children are having trouble adapting, asserting that many more families have contacted media outlets with similar issues. Sagie also highlighted that while a drug called Sapropterin is available internationally for PKU, it has been rejected for inclusion in Israel's national health basket due to cost concerns.

Another mother shared that her daughter, who previously consumed Phenyl-Free without issue for years, now refuses alternatives, leading to significant distress and an inability to maintain proper metabolic balance. She recounted efforts to encourage consumption, including mixing with sweet foods and taking her daughter on outings, all to no avail. The child now reportedly eats forbidden foods in secret and complains of stomach pain. Other parents report similar struggles, with children becoming irritable, aggressive, and restless, and experiencing persistent hunger, even waking up crying at night.

One family resorted to personally importing Phenyl-Free from the United States at a cost exceeding 1,000 shekels per month, stating they felt they had no one else to rely on. The Ministry of Health responded by stating there is no widespread shortage of medical food for PKU patients in Israel and that they are aware of two cases of patients struggling with alternatives. They claim to be working with health maintenance organizations to find tailored solutions and have facilitated personal imports for these cases. The ministry also announced that an additional specialized food has been approved for import and is expected to arrive soon, aiming to address the needs of those who cannot adapt to existing alternatives.