In the Dakahlia governorate, at least 12
In the Dakahlia governorate, at least 12 children suffer from Mucopolysaccharidosis (MPS) and Gaucher disease, rare and dangerous genetic conditions, but local hospitals have refused to treat them.
Despite court rulings ordering them to assist those affected, the Health Insurance Hospital in Mansoura and the Ministry of Health (MoH) have not treated the children, prompting the patients’ parents to stage a sit-in in front of the Dakahlia Governorate headquarters in early June.
Ibrahim Mustagaeer, father of three, is among those affected. “I am a seasonal worker and barely get by. I have three daughters: Hajar, 10, Sara, 6, and Amal, who is a year and a half, and they all have MPS and suffer from a deficiency of liver enzymes. Hajar was born with a congenital flaw, causing the curvature of her spine.”
Dr. Mohamed Haggar referred his daughter to the National Research Center for some tests and she was diagnosed with MPS VI. Over time, all three of his daughters got symptoms of the disease, including hearing and visual impairment, heart failure, cloudy corneas, and heart valve abnormalities.
Hajar’s mother said the treatment was very expensive. “It is a weekly injectable drug that costs L.E. 14,000 – and which adds up to four million pounds a year. No one can afford such treatment, not even the rich,” she said. “But the HIH refused to treat our daughters.”
They filed a lawsuit against the Ministry of Health and the hospital to force them to treat Hajar and Sara. “We won it and final rulings were issued. Although the annual cost of treating my two daughters is L.E. 4,160,000 (three injections a week) which exceeds the legal annual limit of L.E. 500,000 for each person, the Administrative Court in Mansoura has issued a decision forcing the HIH to treat Sara and Hajar,,” their father said. “So far, however, the MoH and the HIH have not executed the verdict and they still refuse to treat my daughters.”
Prime Minister’s approval?
Dr. Mohamed Haggar, a professor of pediatrics at Mansoura University, says MPS VI is a genetic disease caused by relatives marrying. It attacks the heart, the eyes and the nerves and affects one in every 250,000 children or 150 children in Egypt. Both MPS and Gausher disease are caused by a deficiency of the enzymes responsible for breaking fats in cells, leading to their enlargement due to fat accumulation, causing the damage of vital organs such as the heart and the liver.
The disease, says Dr. Haggar, can be treated using three methods: the first only cures the symptoms of hearing and visual impairment and heart failure. The second is applied through transferring enzymes, while the third is through stem cells. In Egypt, only the first method is available. The other two are too costly, although they are very successful.
Dr. Murhaf Mogai, who works at the HIH in Mansoura, says the drugs to treat Gaucher disease and MPS are very expensive and can only be imported if approved by the prime minister. For this reason, he said, the HIH and the MoH do not enforce the relevant court orders. However, once the approval is given, the procedures to treat these cases at the MoH’s expense will be started.
Governmental hospitals refuse
Gaucher patients are in a similar situation to those with MPS. “A court order has been issued forcing the MoH to treat my five-year-old daughter Basmala after the death of her older sister of the same disease when she was only six-months old,” said Wahid Mohamed, Basmala’s father.
There are 22 Gaucher cases, 20 of which are being treated by Project Hope at the Children Hospital in Dakahlia, the same hospital where Maryam, Basmala’s sister, died.
In light of the high cost of the drug, the suffering of patients with these two rare diseases is unlikely to be eased any time soon. Therefore, Basmala’s father said he has no choice but to plead with the president and the minister of health, urging them to consider the plight of his daughter.