Newspaper article The Evening Standard (London, England)

Family of Girl, Seven, in Plea to NHS for PS4,000-a-Month Leukaemia Drug

Newspaper article The Evening Standard (London, England)

Family of Girl, Seven, in Plea to NHS for PS4,000-a-Month Leukaemia Drug

Article excerpt

Byline: David Gardner and Ross Lydall

A GIRL who has a rare form of leukaemia is seeking NHS funding for potentially life-saving drugs.

Ebonie-Rose Musselwhite, seven, desperately needs medication costing up to PS4,000 a month. Her parents Christine Jenkins and Ben Musselwhite, of Crawley, West Sussex, fear NHS England will not pay for the drug and are trying to raise the cash themselves.

If Ebonie-Rose receives the medicine, they believe she could remain in remission for the rest of her life. A doctor at the Royal Marsden Hospital in Sutton, where she has been treated, submitted a request to NHS England two months ago for her to be given dasatinib, also known as Sprycel, as an exception.

Her parents will today enrol her in an unrelated clinical trial at Great Ormond Street Hospital that will seek to "supercharge" her white blood cells to fight the disease.

Ebonie-Rose was diagnosed with Philadelphia chromosome-positive acute lymphoblastic leukaemia (ALL), aged four. ALL is the most common form of childhood leukaemia. Dasatinib is approved for NHS use on adults with a different form of Philadelphia chromosomepositive leukaemia.

Earlier this month its manufacturers Bristol-Myers Squibb gained European Commission approval for it to be used in children with that different form of leukaemia. It is a tyrosine kinase inhibitor, a class of drug that stops cancer cells growing and dividing.

Ms Jenkins said she was aware, via Facebook patient forums, that dasatinib had been successfully given to children in the US with Ebonie-Rose's form of leukaemia. The disease causes white blood cells to become cancerous.

Ms Jenkins said: "We have been waiting for six to seven weeks to hear from the NHS on whether they will fund the dasatinib, but we're 98 per cent certain that we won't get it because very little funding in the UK is earmarked for child cancer. …

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