Teddy Shaw, a 19-month-old baby diagnosed with a hereditary and fatal genetic disease, will be able to live a normal life thanks to gene therapy, which will now be paid for by the UK National Health Service. The keeper.
The British National Health Service has reached an agreement with the pharmaceutical company Orchard Therapeutics to provide a discount of three million euros on the most expensive drug in the world. Thus, patients with metachromatic leukodystrophy, a disease that occurs when the body is unable to break down some of the lipids due to a lack of enzymes, will be able to access the drug through the National Health Service.
“This is a moment of hope for parents and children with devastating illnesses. Now they can get the right treatment from the British National Health Service,” said Amanda Pritchard, director of the service.
Every year in England, about five children are born with metachromatic leukodystrophy. When the disease begins before the age of 30 months, children die between the ages of five and eight. If this condition begins after 30 months and six years, life expectancy is 10 to 20 years.
Author: morning Post
Source: CM Jornal
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