A British child will be treated with the most expensive medicine in the world for free
Child Edward with his mother and father (BBC)
The Health Services Authority in Britain has agreed to bear the expenses of treating a child with a rare disease, the most expensive medicine in the world, after a humanitarian campaign led by his parents, which drew support from tens of thousands to pressure the government.
Edward was diagnosed with spinal muscular atrophy at the age of 10 months, which means that he lacks a protein vital for muscle development and affects the nerves that emerge from the spinal cord in the spine.
According to the BBC, Edward is scheduled to receive the new gene therapy for this condition, "Zolgensma", which costs 1.79 million pounds.
Megan Willis, the mother of Edward, 29, commented on the success of the campaign, saying, "We feel very fortunate, happy and at ease."
"We've been fighting for a long time for this drug. We can't believe we've finally succeeded. We hope we don't have to wait that long," Willis added.
Doctors treating him said he should be given a one-time and as soon as possible medication that contains an exact copy of the missing SMN1 gene, which causes muscle atrophy, to stop the disease progression.
The mother explained that medication could make the difference in Edward's condition and his ability to stand on his own two feet.
She confirmed her readiness to organize a protest if the decision was delayed for a longer period.
She added that "Edward will complete his first year in September, and time is the determining factor."
Zolgensma is the world's most expensive drug, costing £1.79m per patient, although the NHS said it had negotiated an undisclosed discount.
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The most expensive medicine in the world,
Spinal Muscular Atrophy