x Abu Dhabi, UAESunday 23 July 2017

Doctors want support on congenital diseases

Doctors dispute insurance claims that treating congenital illnesses are unnecessary because the diseases are incurable.

Doctors want more support from insurance companies for the treatment of congenital and genetic diseases.

Dr Amin Gohary, a paediatric surgeon at Al Noor Hospital, said insurers often rejected claims for the treatment of congenital anomalies because they are considered to be pre-existing.

Dr Gohary spoke of inguinal hernia, a condition in which soft tissue, usually part of the intestine, protrudes through a weak point or tear in the lower abdominal wall.

"Children are born with this defect - of course it's pre-existing," he said. "There are certain situations if we don't treat them immediately, they could be colossal."

Figures from the Health Authority-Abu Dhabi (Haad) show that congenital anomalies account for almost three-quarters of infant deaths.

The most recent study, in 2006 by the maternal and infant health group March of Dimes Foundation, ranks the UAE sixth worldwide in birth defects, with nearly 76 of every 1,000 live births.

Haad has taken steps to combat the infant death rate, with the most recent being screens for congenital heart disease at birth.

Daman's basic plan, which sets the baseline for all insurance companies operating in Abu Dhabi, does not cover congenital anomalies in the first 30 days after birth unless they are considered life-threatening. After 30 days, treatment is covered if deemed medically necessary.

But other funding is available, such as the free healthcare programmes required by Haad and accessible through the Seha network.

Other genetic diseases, such as metabolic disorders, are not covered because these cases are incurable, said Dr Michael Bitzer, the chief executive of Daman.

One of the most severe cases is when the body lacks enzymes to break down certain foods, and children barely live through their teens.

Treatment involves weekly injections of the missing enzymes, which cost about Dh5,000, amounting to more than Dh200,000 a year.

"With metabolic diseases, unfortunately for the children, most of them cannot be treated," Dr Bitzer said.

Experts believe this is a grey area. Dr Ghazi Omar Tadmouri, assistant director at the Centre for Arab Genomic Studies, used the example of phenylketonuria (PKU), in which the body lacks enzymes to break down phenylalanine, a protein that is found in most food.

High levels of phenylalanine in the blood can result in severe brain damage. Testing for PKU is now part of national newborn screening.

"When a positive case is found, what you need to do is just put that child on a diet avoiding aspartic acid during the first 10 years of his life," Dr Tadmouri said.

"After the first 10 years, the individual can go on living normally while taking certain precautions. But did this child die? No."

mismail@thenational.ae