As NHS and US drug company wrangle over life-saving drugs, Letchworth girl's health deteriorates
PUBLISHED: 17:01 15 August 2019
A month on from the launch of a fundraising appeal to save a girl's life in Letchworth, her mother has told the Comet about new "frustrating" developments that have left her family in depair.
Last month, we wrote about Emily Marvell, a 19-year-old girl from Letchworth who desperately needs your help with her life-long battle against cystic fibrosis.
Now, one month on, fundraising efforts have stalled and her future is looking increasingly uncertain.
Her mother, Clare Marvell, has been busy raising £13,500, but that's less than 10 per cent of the total needed to buy supplies of Symdeko - a prescription drug sold by American pharmaceutical company Vertex - which has been proven to slow the worst effects of Emily's condition.
The family were quoted a staggering £159,000 for a year's supply of Symdeko, as the NHS battles with the company to bring the drug to the UK.
As negotiations go on, Emily's lung function has dropped below 50 per cent, she struggles with extreme tiredness and her rapid weight loss is a continuing concern.
Doctors attempted to put a nasal gastric tube in to help Emily take drugs, but she couldn't tolerate it after days of trying. Now she will need another operation to insert a different device into her stomach to assist with feeding.
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Clare says that if Emily had access to Symdeko, this latest situation - and more widely her deteriorating health - could have been avoided altogether.
Earlier this week a report published in Canada estimated that Vertex would make a profit of £17 billion from treating cystic fibrosis.
When we showed this to Clare, she had no uncertain words for the company.
"Words can't explain the frustration about hearing about the amount of profit Vertex are making.
"I would like to invite Vertex to come and spend a few days with us. To see the suffering and heartache this awful disease has caused our family.
"I'd ask them how they would feel, watching their child doing physio three times a day, taking handfuls of tablets, coughing up cupfuls of blood.
"I am of the opinion that Vertex has lost all sense of what is right, how they can sleep at night is beyond me."
If you can contribute to Emily's cause, visit gofundme.com/f/helping-emily-get-life-saving-drugs.