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ABC News
ABC News
Health
By Hellena Souisa

Parents demand answers after 141 Indonesian children die of acute kidney injury linked to syrup medicines

Baca dalam Bahasa Indonesia

"Apologies, I can be interviewed now," said Agustina Maulani. 

Her voice sounded tired.

"Today is exactly two months since Azea died, so we went on a pilgrimage to her grave," she said.

Nadira Azea Almaira was Ms Maulani's only child and one of 141 Indonesian children who have died this year due to acute kidney injury (AKI).

Scores more children have become seriously ill from the condition.

Azea was only 17 months old.

Ms Maulani said her daughter's ill health began with a fever in August and she took her to a local health centre.

"There she was given paracetamol syrup and had her blood checked in case she was infected with dengue fever or typhus," she said.

"But all the blood tests were normal, so I was not worried."

Ms Maulani went home and followed the doctor's advice, giving her daughter the paracetamol syrup every four hours for a maximum of 48 hours.

Azea recovered but fell sick again six days later and was admitted to hospital.

Her condition worsened and after eight days, including five on a ventilator, Azea died.

Ms Maulani said she was still not sure what caused her daughters' kidney failure.

"My heart is broken; it's too soon for us," she said.

"I only got to hold her for 17 months after a long wait for us to have a child."

Ban comes after similar deaths in West Africa

Dozens of tragic stories like Azea's have been emerging from Indonesia in the past week after the government there temporarily banned pharmacies from selling some children's syrups and liquid medicines.

The ban came as authorities in The Gambia, West Africa, probed the deaths of 70 children from AKI linked to paracetamol syrups used to treat fever, which contained excessive levels of diethylene glycol and ethylene glycol.

"In September, we were confused [because] cases of acute kidney injury were increasing rapidly, attacking children, very deadly, but not caused by pathogens," said Indonesia's Health Minister Budi Gunadi Sadikin

"What opened our eyes was the cases in The Gambia."

Mr Sadikin said the medicines consumed in Indonesia and Gambia both contained ethylene glycol and diethylene glycol as contaminants, from medicinal raw materials which function as solvents in syrups.

These compounds are toxic to humans when consumed and can prove fatal, especially in children, according to the World Health Organisation.

Mr Sadikin said the contaminants were found in kidney biopsy results from some of the deceased children, and in the patients' home medicines.

He said this led authorities to conclude that the cause was contamination from the solvent.

"Is it certain [that the two compounds are the cause of AKI]? Well, it is much more certain now than before because it is proven that these compounds [have been] found in children's blood," Mr Sadikin said.

Indonesia's Food and Drug Supervisory Agency (BPOM) is investigating contaminant levels in the medicines and has found five brands of cough and cold syrups with ethylene glycol above the threshold.

'What caused Azea's kidney failure?'

Meanwhile, the health authorities this week declared about 150 other drugs safe while testing continues.

One of those reportedly safe drugs was the syrup medicines taken by Azea.

"So, what caused Azea's kidney failure?" asked Ms Maulani.

Marvina Novianti's 10-month-old son, Viendra Adnan Prawira, was another of the children to die from AKI. 

In August, she took him to a local health centre, where he was given paracetamol drops and a powder for coughing and colds.

He died about two weeks later.

Ms Novianti is still unsure what caused his kidney failure. The paracetamol drops he was given were also on the safe list.

"I want to know in detail about his sickness, and the cause," she said.

Paediatric kidney expert Sudung Pardede, who is on the team investigating the cause of the AKI deaths, said the initial findings did not prove there was a direct link between the syrup medicine and cases of acute kidney failure in children.

"This is still an interim result," he said.

"We can't fully confirm it because the research is still ongoing."

Professor Pardede said there were many causes of AKI besides ethylene glycol poisoning, such as dehydration, which reduces blood flow to the kidneys or abnormalities in the kidneys themselves.

He said if the syrup medicine taken by a child had been confirmed to be safe from ethylene glycol contamination, it was necessary to further investigate other possible causes.

Raw material supplier may have changed

Ms Novianti also questioned why the spike in new cases was happening now, even though hundreds of brands of syrup medicines had been used safely for decades.

According to Anis Yohana Chairunisaa, a professor of pharmaceutical technology at Padjadjaran University, it was possible the supplier of the raw materials for the medicines had changed.

"[The] levels of ethylene and diethylene in the propylene glycol feedstock from this new supplier [could be] higher," Dr Chairunisaa said.

She said pharmaceutical companies should be the first to do quality control to check contamination levels before the raw materials were used to make medicines.

Indonesia's Food and Drug Supervisory Agency (BPOM) also had a role to play, she said.

BPOM previously said that it had never tested the levels of ethylene glycol and diethylene glycol in drugs because there was not international testing standard.

"The standard for testing the two ingredients will be developed, so that they become part of our routine sampling," said the agency's head Penny Lukito.

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