Diet in phenylketonuria: a snapshot of special dietary costs and reimbursement systems in 10 international centers.
OBJECTIVE
To gather exploratory data on the costs and reimbursement of special dietary foods used in the management of phenylketonuria (PKU) from ten international specialist PKU centers.


METHODS
Experts from each center provided data on retail costs of the three most frequently used phenylalanine-free protein substitutes and low-protein foods at their center; reimbursement of protein substitutes and low-protein foods; and state monetary benefits provided to PKU patients.


RESULTS
The mean annual cost of protein substitutes across 4 age groups (2 y, 8 y, 15 y and adults) ranged from €4273 to €21,590 per patient. The cost of low-protein products also differed; the mean cost of low-protein bread varied from €0.04 to €1.60 per 100 kcal. All protein substitutes were either fully reimbursed or covered by health insurance. However, reimbursement for low-protein products varied and state benefits differed between centers.


CONCLUSIONS
The variation in the cost and reimbursement of diet therapy and the level of additional state benefits for PKU patients demonstrates the large difference in expenditure on and access to PKU dietary products. This highlights the inequality between healthcare systems and access to special dietary products for people with PKU, ultimately leading to patients in some countries receiving better care than others.
Unidad de Enfermedades Metabolicas, Servicio de Pediatría, Hospital Ramón y Cajal, Madrid, Spain.
A
A
Belanger-Quintana
K
K
Dokoupil
H
H
Gokmen-Ozel
A M
AM
Lammardo
A
A
MacDonald
K
K
Motzfeldt
M
M
Nowacka
M
M
Robert
M
M
van Rijn
K
K
Ahring
D018753:Diet, Protein-Restricted / Q000191:economics*; D004044:Dietary Proteins / Q000008:administration & dosage; D005062:European Union; D005502:Food / Q000191:economics; D006078:Government Programs; D006801:Humans; D010649:Phenylalanine; D010661:Phenylketonurias / Q000178:diet therapy* / Q000191:economics* / Q000628:therapy; D012051:Reimbursement Mechanisms
D004044:Dietary Proteins; D010649:Phenylalanine