The life-changing asthma drug that George, 11, may lose
Most of the 1.1 million children in the UK with asthma control it with GP-prescribed medication. But for a few, asthma is a potentially fatal illness that leads to regular emergency treatment.
For them Omalizumab, a new drug marketed in the UK as Xolair, offers hope. Trials show it to be effective in those who are often hospitalised with severe attacks.
However, young asthma-sufferers in England and Wales may be denied the drug because it is not deemed cost-effective.
The National Institute for Health and Clinical Excellence (NICE) last month recommended it only for those aged 12 or over. All ages qualify in Scotland. The result is an asthma postcode lottery.
Xolair works on the root cause of asthma, the allergic reaction that triggers breathing constrictions. It has been found to greatly help those for whom the regular drugs are ineffective.
George Williamson was eight when he was first diagnosed. Now 11, his asthma was once so bad he was hospitalised on numerous occasions and had to be treated in intensive care.
Given Xolair in a trial last year, his life has been transformed. His mother Brigid, 55, says: ‘It’s made such a difference. He can start living like a normal child again.’
George developed asthma in October 2007. ‘He had a cough for a few days and deteriorated so much we took him to hospital,’ says Brigid, a psychologist.
He was given oral steroids and medication via a nebuliser. ‘Just as doctors were telling us they needed to admit him, he went into respiratory arrest. He was in intensive care for three days.’
George, from Richmond-upon-Thames, Surrey, was prescribed inhalable steroids and the drug Ventolin. They controlled his asthma for several months but from April 2008 to July 2009 he had 14 admissions.
Brigid says: ‘It got to the point where nebulisers weren’t enough. They had to give him Ventolin intravenously. He’d often end up in the high dependency unit (HDU).
‘He was on steroids most of the time and missing school. We cancelled holidays. He missed his tenth birthday party as he was in the HDU at John Radcliffe Hospital in Oxford after an attack.’
Last year, after a terrible episode left George in a medically induced coma, he started Xolair trials with the drug being injected once every two weeks at the Royal Brompton Hospital, where a unit specialises in severe asthma.
The change in George’s condition has been profound. Brigid says: ‘He is off steroids, putting on weight and his quality of life is vastly better. Xolair has allowed him to start living again.’
If NICE’s recommendations come into effect, Brigid is unsure if George will continue to qualify for treatment. ‘At the moment we have funding but that could change,’ she says.
The independent appraisal committee concluded that, at £256 per Xolair treatment, the drug is not cost-effective for under-12s for the NHS.
Only the 300 or so children who each year suffer three or more ‘significant exacerbations’ – episodes in which they rapidly deteriorate – would be eligible for Xolair treatment by NICE criteria.
NICE’s decision has been widely criticised. John Warner, Professor of Paediatrics at Imperial College London, says: ‘This may be a small percentage of asthma sufferers, but they constitute the highest cost to the Health Service. I disagree violently with the decision.’
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