Teenager uses Human Rights Act to sue health authority over vital growth drugs | Law | The Observer

A 15-year-old boy who suffers from a rare medical condition that means he cannot eat protein is to make legal history by becoming the first child to sue his local health authority under the Human Rights Act.

The boy's lawyers claim that he will suffer both physical and mental retardation at a critical time in his adolescent development unless Derbyshire primary care trust agrees to fund a drug that helps him consume a normal diet.

The boy, who is referred to as NL, is said by his solicitor to be half the weight of normal children because of his condition, phenylketonuria, or PKU.

The rare condition affects one in 15,000 people, making it difficult for them to produce an enzyme that breaks down the protein found in meat, chicken, fish, eggs, nuts and cheese. It is sometimes fatal.

Derbyshire PCT has refused to pay for the boy to receive Kuvan, a drug that can alleviate the condition and costs £30,000 a year, on the grounds that he is not an exceptional case and there are alternatives available such as a synthetic food diet.

The case, one of the first to invoke the Human Rights Act against a PCT, is highly unusual because the claim against the PCT is being made under article six, the right to a fair trial, and article eight, respect for family life.

The boy's lawyers claim article six is relevant because of the way in which the PCT reached a decision not to fund the drug. They also say the boy's mother has had to give up her job because of the stress on the family, while his two younger brothers have suffered because his poor diet has left him often short-tempered, indicating that a claim under article eight is also valid.

His family has raised sufficient funds to pay for a one-year course of Kuvan, but they say their resources have now run out. The boy's father, Max, said his son may soon have to return to a synthetic diet that he has refused to eat in the past, leaving him prone to malnutrition.

Since the boy started taking the drug, which is widely available in other EU countries, he has made a dramatic improvement, according to his family and experts at Birmingham children's hospital who have observed him.

The boy has been able to eat small amounts of protein – about a third of a normal child's intake, which is equivalent to a bowl of cereal a day without milk. He has gained weight as a result. His father said the family was not asking the PCT to supply the drug indefinitely, but for the next three years, during which time the increased protein intake could help NL with his adolescent growth spurt.

"We have pretty much spent our life savings," Max said. "We are down to selling our house to continue. If not, I've got to put my son through more pain by taking him off the drug."

He said that since NL had been on the drug it was "like having a different son. His whole character has changed. He's less angry, easier to deal with, far more tolerant, more relaxed, more humorous, his confidence has improved and he's more able to concentrate."

Oliver Wright, of MPH solicitors who are acting on behalf of NL, said: "The PCT said we couldn't prove that it works and that it only works for one in four people with the condition. Well, my client has paid for it for a year and shown it works. He's put on weight, he's grown, he's happier."

The PCT, which declined to comment, was preparing to fight the case in court after proceedings were issued against it in February. However, after a series of legal wrangles, it has now referred a decision to its specialist individual funding request panel. If the panel declines to approve funding, the boy's lawyers will seek a judicial review into how the PCT reached its original decision.

The case is being studied closely by medical lawyers. Experts predict an increasing number of patients will use the Human Rights Act to demand access to expensive drugs and surgery. This week the High Court is expected to deliver its verdict in the case of Tom Condliff, a diabetic who says he will die within a year if Staffordshire primary care trust refuses to pay £5,500 for him to have a gastric bypass.

His legal team has argued that without the operation there is a significant chance he will lose some of his limbs, making the cost of caring for him far outweigh that of the operation. But lawyers for Staffordshire PCT have said that National Institute of Clinical Excellence (Nice) guidelines make it clear that he does not qualify for surgery in his current condition.

The case is the first to have been brought under the Human Rights Act against a PCT, with Condliff's legal team arguing that, under article two, the Staffordshire trust must respect their client's right to life. If it is successful, similar applications are expected to be made at many of the UK's 159 PCTs.

via guardian.co.uk