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Friday, 24 September 2021

Sisi urges early detection for Spinal Muscular Atrophy; says state will bear the treatment cost

Health Minister Hala Zayed revealed that an account was opened in the Long Live Egypt Fund for fundraising for the treatment of children with SMA

Ahmed Morsy , Wednesday 30 Jun 2021
President Abdel Fattah El-Sisi
President Abdel-Fattah El-Sisi during his inspection tour of the equipment used by various state authorities participating in the presidential ‘Decent Life’ Initiative to develop the villages of the Egyptian countryside on Wednesday, June 30, 2021. Al-Ahram
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Egypt’s President Abdel-Fattah El-Sisi said on Wednesday that the Spinal Muscular Atrophy (SMA) disease may have a cure and the state can bear its cost, urging for an early detection of the disease during the first year of a child's birth to avoid difficulties.

El-Sisi’s statement came during his inspection tour of the equipment, vehicles, and engineering machinery of the various state authorities participating in the presidential ‘Decent Life’ Initiative to develop the villages of the Egyptian countryside.

SMA is a rare and often fatal genetic disease, according to the FDA, for being a hereditary disease that causes weakness and muscle wasting because patients lose lower motor neurons (nerve cells) that control movement.

El-Sisi noted that the best treatment for the SMA disease “is until a year after the birth of the child”, because after such age things become more difficult, adding that this could be done by postpartum examination.

The treatment cost for each case reaches $3 million, El-Sisi noted.

“The number [treating cost] we are talking about is very high. For example, if 10 children cost $3 million each, it means $30 million, which means about EGP 450 million,” El-Sisi said, calling on civil society organisations to take part in the treatment cost in cooperation with the Long Live Egypt Fund.

Health Minister Hala Zayed revealed that an account was opened in the Long Live Egypt Fund for fundraising for the treatment of children with SMA.

Zayed announced during El-Sisi’s tour the start of the presidential initiative for early detection of genetic and hereditary diseases next month, revealing the modernisation of 3 gene therapy centres in the Armed Forces’ Al-Galaa Hospital, Ain Shams Hospital, and the Nasser Institute.

A partnership contract has been signed to treat SMA, and it will start with treating 10 children starting next week, Zayed noted, adding that there are presidential directives to negotiate with drug manufacturers for the cure to the disease.

She added that there are 204 SMA cases registered until now, including 57 cases under two years and 32 cases that need to be treated immediately.

This comes few days after the struggle of an Egyptian baby, Rasheed Yasser Taha, who suffers from the disease, has been recently trending on social media platforms with a hashtag spreading by tens of thousands of people to help the little boy. 

Rasheed’s case gained attention when his father released a plea for assistance from the government to help in his son’s treatment that cost $2.1 million (EGP 35 million) for the cure. Days later, Rasheed’s father announced through his Facebook account the success of the popular fundraising campaign launched through social media in collecting EGP 35 million.

“Thank you to everyone who supported Rasheed... because of you, Rasheed will take the injection and, God willing, many children after him! We invite you to start this week’s treatment journey, and come with us, step by step, until we are assured of it,” Rasheed’s father wrote.

In parallel, another fundraising campaign has been launched for Layal, another baby girl who suffers from SMA, whose mother announced the success of the campaign to collect more than EGP 3 million in two weeks, equivalent to only 9 percent of the total required amount for the treatment injection.

Layal’s mother expressed her confidence in reaching the desired amount before the deadline expires, especially since her daughter reaches the age of two only in 50 days, after which the injection may not have any effect.

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