Anushka Asthana 

What happened to …

Sickle cell children.
  
  


On 3 June, 2007, The Observer reported that sick children who had taken part in a revolutionary drug trial faced the prospect of having the treatment taken away from them because of NHS cost-cutting.

The children - who suffered from the rare blood disorder sickle cell anaemia - had seen their lives transformed by the drug, Exjade. Instead of having a needle inserted in their stomach for eight to 12 hours a night as part of their treatment they simply took two tablets each day.

The treatment is needed to help clear life-threatening excess iron from the blood of patients that builds up as a side-effect of regular blood transfusions.

The article featured the story of 10-year-old Daniel Nwosu, from Peckham, south London, who had the agonising injections for 10 hours a night, five times a week. The Exjade drugs trial felt like a miracle to him and his mother, Carol, but in June they feared the treatment would not be funded by their primary care trust in Southwark.

'To give a child a taste of how good it can be and then make them go back to the old system is punishment,' Carol said at the time. 'It is cruel and it is abuse.'

Last week in a text to friends, Carol said: 'Good news. Southwark have confirmed that Exjade is available to all those that need it.' The south London council says it will continue to prescribe Exjade to the patients who were on the trial, 'and for all those patients where it is deemed clinically appropriate'.

 

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