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Les C. | Colorado | Patient Age: 43 | Disorder: PKU

Even though I do not use Abbott products, the Abbott hold is affecting me. Due to other patients seeking alternative products, there has been higher demand for the products I use from Nutricia . For the last two months, I have received partial shipments with the remainder on backorder. Last month, the backordered amount arrived within a week. This month, the remainder is still on backorder with no estimated shipping date. This is causing me additional anxiety as I don’t know how long my current supply will need to last. Due to insurance requirements, I am not able to order ahead or maintain an extra ‘stockpile’ in case of shipping delays like this.

PKU is a metabolic disorder in which the body cannot break down the amino acid phenylalanine, found in most types of protein. It is treated primarily by a low protein diet supplemented with medical formulas such as the ones manufactured by Abbott and Nutricia (among others). These medical formulas provide the protein and nutrition necessary for continued physical and mental functioning. It is simply impossible to maintain PKU treatment and the low protein diet without medical formulas. Without medical formula, the low protein diet is nutritionally inadequate. Medical formula is a critical need for those with PKU and similar treatments. Without medical formula, I would be forced to eat a higher protein diet, taking in too much phenylalanine for my body to process. Too much phenylalanine for a PKU patient means loss of mental functioning, permanent brain and nerve damage, and eventually institutionalization. Fortunately I have been on the low protein diet and medical formula since birth, so I am a productive, contributing member of society. Without a regular supply of medical formula, I will not be able to continue to hold a good job and take care of myself.