“You have the medication to make me feel so much better and not have to spend so much time in the hospital.” These words addressed to one of the directors of the Vertex Pharmaceuticals laboratory are signed by the hand of an 8-year-old child. Little Luis Walker has cystic fibrosis or cystic fibrosis, a genetic disease which affects the lungs and digestive system. After having arrested British Prime Minister Theresa May in vain, the young patient had the idea with his mother to write a letter directly to the managers of the pharmaceutical company that markets the Orkambi, a innovative treatment for cystic fibrosis. This is done in the hope that the company will lower the cost of this expensive drug.
A disagreement over the price of the drug
Orkambi was approved by the European Medicines Agency in November 2015, but an agreement on prices and reimbursement rate has not yet been reached with the NHS, the UK’s national health service. The failure of these price negotiations has hampered the drug’s authorization in the UK, denying patients access to treatment capable of slow down symptoms of disease. “If your son had cystic fibrosis, I know you understand and lower the price of Orkambi,” Luis continues in his letter.
Luis’s mother Christina told the bbc : “It’s a very simple message: please lower the price so that the NHS can [le prendre en charge]. “Our children deserve the chance that everyone has and they now get one with this drug,” she adds.
In France, the Orkambi is not marketed in France, but it is available and reimbursed in other European countries such as Italy, Germany, Ireland and the Netherlands.
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