Friday, May 31, 2019

For the sake of SMA Children , Sign this petition

For the sake of SMA children, I ask you to sign this important petition and to spread everywhere online.

Families of children suffering from Spinal Muscular Atrophy "SMA" have been sending pleas for years now to everyone in order to save their children from that cruel disease.

Launched by one of the mothers of SMA children, the petition is calling Egypt's President El-Sisi and Minister of Health Hala Zayed to issue a decree to include SMA's medicine in the medical insurance in Egypt.

Most of you do not know that SMA has got the most expensive treatment system in the whole world and with the struggling Egyptian economy, it is like fighting an impossible battle but the families fight it either way.
Late Khadijah, one of the famous SMA
children on social media.

Parents of SMA children use social media asking for donations and help but this is not a solution.

The petition asks the Egyptian government to provide Sprinza drug which helps SMA children a lot to improve their health condition.

Its only problem is its price tag. Its costs in the United States starts at $ 750,000 in the first year and $375,000 annually after that.

Already I believe that as Egypt heads the African Union this year, it is a good opportunity to speak not only about SMA Egyptian children but rather African SMA children in general.

The Egyptian government can go in talks with the company producing Sprinza with the help of the UNICEF and WHO to get it for a better price.

It is unfair by all measures that SMA children suffer from it in that way in third world countries.

A rare neurological genetic disease, even the richest countries in the world provide its treatment in its medical insurance system for some of its types.

Currently, SMA is making headlines again with its newly approved medicine, Zolgensma.

Newly approved by FDA, Zolgensma is dubbed rightly so as the most expensive drug in history for USD 2.1 million for a single dose, yes a single dose. 

BY the way, Khadijah Mamdouh who was one of the girls mentioned in the 2018 Ahram Online report passed away earlier this year following a long struggle with that terrible disease. She is the second kid I have read about to die in the past three years because of it. 

1 comment:

  1. Who concerns include SMA's medicine in the medical insurance in Egypt


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