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8-Week-Old Baby Needs Genetic Disease, World’s Most Expensive Medicine, The Price Of One Dose Is 16 Crores

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Britain-born eight-week-old Edward has genetic spinal muscular atrophy (SMA) disease. It is to be treated with one of the most expensive drugs in the world, zolagenesma injection. The price of this injection is 1.7 million pounds i.e. 16 crores. Edward’s parents have launched a campaign to raise money from crowdfunding. They have also received Rs 1.17 crore so far.

Edward’s parents John Hall and Megan Willis, who live in Colchester, Sussex, said the son’s life is precious to them. They will do everything possible to save his life. Megan says injections are expensive, but research results show that it is also highly effective. It has aged many children.

SMA drug received three years ago

There was no cure for SMA until three years ago. However, in 2017 15 children were given this drug, allowing all to live for more than 20 weeks. Of the 12 children who were given high doses, 11 were able to sit without support and two were able to walk alone. This injection is not available in the UK. It is sourced from America, Germany, Brazil, or Japan.

Patients are not able to stay alive for long

The SMN-1 gene is deficient in the body when genetic spinal muscular atrophy occurs. Due to weak chest muscles, breathing becomes difficult. As time progresses, the patient dies due to increasing difficulties. This disease mostly occurs in children. Every year 60 such babies are born in Britain.

Zolgensma most expensive injection

Zolgensma is one of the three gene therapies that have been allowed to be used in Europe. The company that makes it says that this medicine is given to the patient only once in the treatment of a rare disease like SMA, so it is expensive. In the case of expensive drugs, the zolagenesma injection of 16 crores is followed by Glibera therapy (7.3 crores) and Laxturnea injections (6 crores rupees).

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