NHS should consider protein-control treatment for PKU child
18 August 2017
SB, R (on the application of NHS England) [2017] EWHC 2000 – read judgment
The High Court has quashed a decision by NHS England refusing to fund the drug Kuvan for a young boy who has a condition inhibiting his ability to digest protein.
This case involves a number of important issues, such as the allocation of resources under the NHS, the extent to which courts may interfere with healthcare choices, and the role of “rights” in these decisions, including the welfare of the child. David Hart QC discusses these issues in detail with Rosalind English in the latest podcast in our Law Pod UK series; here is a brief summary.
The seven-year-old child has severe autism and phenylketonuria (PKU), an inherited metabolic disorder. The mainstay of PKU treatment is a strict dietary regime which restricts the intake of high protein foods. But because of his autism, SB is unable to understand and therefore abide by these food restrictions. Consequently his doctors sought funding for the drug Kuvan (sapropterin dihydrochloride), which would allow him to get a proportion of vitamins and minerals from ordinary food. If he were to respond to the drug, the levels of protein in his blood would fall below the level at which he risked irreversible brain damage. However, his consultant acknowledged that his overall development outcome would mostly be affected by the severity of his autism rather than his PKU and that Kuvan would not be expected to significantly alter or improve his behaviour.
The funding panel accepted that SB fulfilled the conditions for exceptional need but the lack of long-term prospects for improvement meant that his application did not pass the “clinical effectiveness” test.
Andrews J found that this decision was flawed and remitted it for reconsideration, with the caveat that the funding panel may be entitled to continue to decline treatment on different grounds.
Listen to Episode 9 of Law Pod UK, available for download on iTunes
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This is an interesting case but one that must bring heartache to the child’s parents.