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ECESR Obtains New Rulings to Bind Government to Treat Gaucher’s Rare Genetic Disease

The Egyptian Center for Economic and Social Rights (ECESR) could obtain new rulings that bind the state and the General Agency for Health Insurance to treat children who suffer from Gaucher’s rare genetic disease after the GAHI refused to treat them and refused to comply with previous rulings which the ECESR had obtained.

Mansoura Court of Administrative Justice * issued its ruling in the lawsuits filed by the ECESR for the two children named Abuld Hameed and Omar Mokhtar Ahmed Emara suspending the GIHA’s decision not to treat the two children ignoring the ruling issued by the State Council** in Mansoura.

In the same context, the ECESR obtained another ruling for a child named Basmala Waheed Mohamed Mohamed.

Such rulings bind the GIHA to treat children with this rare disease. In case the GIHA or the Minister of Health refuse to comply with the ruling, the ECESR will file a lawsuit in self-initiated action against the Minister of Health demanding his detention and removal from office according to article no. 123 of the Egyptian Penal Code.

Gaucher’s Disease

A child who suffers from Gaucher’s disease
A child who suffers from Gaucher’s disease

Gaucher’s disease is a chronic rare inherited disorder that worsens over time. People who suffer from Gaucher’s disease lack certain levels of a specific enzyme, causing the accumulation of glucocerebroside in the body. The accumulation of fats in members of the body or the bones can cause medium to severe symptoms at any age from childhood to adulthood.

Gaucher’s disease occurs in about 1 in 40,000 to 60,000 in general, or 10,000 people worldwide. It is also one of the diseases which are most expensive to treat. Treating some of its types could cost up to 200,000 dollars to treat every year. The reason for this is the rarity of the disease and lack of research done into understanding and treating the disorder.

Gaucher’s disease is the most common disorder in the family of diseases that are known as lipid storage disorders. The defected enzyme in Gaucher’s disease is known as glucocerebrosidase, which helps the body cleave glucocerebroside that accumulates abnormally in Gaucher’s disease when glucocerebrosidase is nonfunctional or absent. The cells which appear on light microscopy like a crumpled-up paper are called “Gaucher cells”.


References:

* rulings 13723 & 13724 registered as no. (825 & 826/37JY)

** Ruling no. (14172/37JY) which indicates that the motion was rejected, and that ruling no. (15836/36JY) will continue to be implemented.