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Tuesday, 21 September 2021

Funding the treatment of genetic disorders

Children suffering from spinal muscular atrophy, a rare genetic disease, will be treated for free

Reem Leila , Tuesday 6 Jul 2021
Funding the treatment of genetic disorders
The new initiative would help in detecting genetic disorders in new born babies
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Last week, President Abdel-Fattah Al-Sisi instructed the government to bear all the costs of treating children suffering from spinal muscular atrophy (SMA), a genetic neuromuscular disease characterised by weakness and the wasting of the muscles used for movement. Treatment is prohibitively expensive for families, writes Reem Leila.

The president noted that the Ministry of Health and Population signed agreements with several multinational companies that provide treatments for the disease. “There are a number of ways to detect this disease during the early months of a child’s life and when detected early it can be treated at the cost of $3 million per child,” said Al-Sisi. He called on civil society to contribute to the plan in cooperation with the Long Live Egypt Fund.

The move is the latest social-friendly presidential initiative aimed at improving the health and living conditions of citizens. Earlier campaigns include the million healthy lives scheme which aims to eliminate hepatitis C and detect a range of non-communicable diseases. The president’s instructions came as he was conducting an inspection tour to check the developments in the Decent Life initiative to improve living conditions in 4,500 of Egypt’s poorest villages.

Minister of Health Hala Zayed, who accompanied the president on his tour, said there are 204 cases in Egypt of children suffering from SMA, 32 of which need to be treated immediately.

“The treatment of 10 cases will start next week at the Nasser Institute and Ain Shams Hospital. A bank account has been opened to receive funds to cover treatment costs,” she said.

Four national pharmaceutical companies have responded to the president’s initiative and will participate by locally producing medicines required to treat SMA disease. According to Zayed, the Egyptian Drug Authority will soon register the first made-in-Egypt drug for SMA treatment.

Zayed also revealed that a new scheme for the early detection of genetic and hereditary diseases will start next month. Equipment needed to detect 19 types of genetic disorders in newborn babies has already been purchased and three gene therapy centres — at the Armed Forces’ Galaa Hospital, Ain Shams Hospital and the Nasser Institute — is already underway.

The presidential initiative came a few days after a social media campaign raised funds for the treatment of Rashid, a two-year-old boy suffering from SMA. The money needed to start Rashid’s treatment was gathered in less than a week.

*A version of this article appears in print in the 8 July, 2021 edition of Al-Ahram Weekly

 

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