Parents demand accountability as fees rise
When 17-month-old Nadira came down with a cough and flu, her mother, Agustina Maulani, bought her paracetamol cough syrup at a health center in south Jakarta.
“I was giving him medicine every four hours because his fever refused to come down. He would recover, but then have a fever again. Eventually he stopped peeing,” she told the BBC.
Nadira was taken to hospital but did not recover. Laboratory tests revealed that he had excess urea and creatinine levels; waste that accumulates after the kidneys stop working. He fell into a coma and died.
“In the end, he died quickly. With a pain that was truly terrible,” Agustina said through tears.
Indonesia is struggling with a terrible wave of death. at least 157 children have died this year from acute kidney injury and other complications believed to be caused by contaminated drugs. Almost all were under the age of five.
Nadira died in August. In October, Indonesian authorities announced that she was among a wave of children who died of unexplained kidney disease.
The government then banned the sale of all liquid medicines. It later limited the ban to about 100 questionable products found in the homes of sick children.
Pharmacies across the country have pulled the bottles from their shelves, instead advising parents to crush pills for their children if they need the medicine.
Indonesia’s Minister of Health Budi Gunadi Sadikin said that the victims were found to have traces of harmful substances: ethylene glycol, diethylene glycol and ethylene glycol butyl ether.
Diethylene glycol and ethylene glycol are commonly used in antifreeze solutions for air conditioners, refrigerators, and freezers, and as solvents for many products, including cosmetics at very low concentrations. The World Health Organization (WHO) says they are never used in medicine.
“It has been confirmed that (acute kidney injury) was caused by (those) materials,” said the minister.
The cases come weeks after nearly 70 children died in The Gambia. The WHO said it found “unacceptable levels” of diethylene glycol and ethylene glycol in four Indian-made cough syrups available in The Gambia.
There is no suggestion that the two scandals are related. Indian authorities and the manufacturer, Maiden Pharmaceuticals, say the four syrups were exported only to Gambia. Indonesia says Indian-made syrups are not available locally.
Last Monday, Indonesia’s Food and Drug Agency, BPOM, said it would investigate two pharmaceutical companies that recently changed their suppliers for some ingredients, from pharmaceutical suppliers to chemical suppliers.
“Their products have indications that are excessive, highly toxic and suspected of causing kidney damage,” BPOM chief Penny Lucito said at a news conference.
Meanwhile, dozens of sick children are being treated for acute kidney injury, and Indonesia has asked Singapore and Australia for supplies of the rare antidote fomepizole to treat them.
The tragedy stunned Indonesia. Last week, the country’s ombudsman criticized the health ministry and BPOM, which he said did not do enough to test products being sold to ensure they met standards.
In an angry editorial, the Jakarta Post newspaper said that the BPOM had handed over the responsibility for testing to the pharmaceutical companies themselves; a “horrific” finding that shows the state has “abandoned its powers”.
“As our hearts sink as parents continue to lose the lives of their precious children, we are now witnessing gross negligence and lack of government oversight,” the newspaper wrote.
Eric Chan, a professor at the National University of Singapore, told the BBC he was shocked to hear that these types of deaths were continuing, and described what was happening in Indonesia as a “human disaster”.
Diethylene glycol was once used to make drugs taste sweeter, but is now known to be toxic, he said.
When diethylene glycol is metabolized in the body, it forms diglycolic acid, which builds up and damages kidney cells, which can be life-threatening if not treated in time, he said. Decreased urination is an early sign of kidney toxicity.
Professor Chan said the fact that cases were reported across Indonesia suggested that a pharmaceutical company with extensive distribution networks was involved. Medical staff at local hospitals may not be used to dealing with drug poisonings, he added, citing the fact that many of the children were transferred from hospital to hospital for treatment.
“We have to keep in mind that the death toll could still rise,” he warned.
In Bekasi, east of Jakarta, Siti Suhardiyati forced herself to clean her son’s toys off the floor.
Umar Abu Bakar was two years old when he died on September 24. Doctors at the last hospital in Jakarta also diagnosed him with kidney failure.
Just two weeks ago he came down with a fever and a cold. He also had diarrhea, so City took him to a local clinic for treatment.
The family was given three types of medicine, including paracetamol syrup. After three days Umar stopped urinating.
“I usually change his diapers in the morning because they are full, but this time there was nothing,” she said.
He was taken to a local hospital for treatment before being rushed to Cipto Mangunjusomo Hospital in the capital. But it was too late.
“How can there be dangerous stuff in this cough syrup? If it is indeed approved by BPOM, it should have been tested,” Ms Suhardiyati said.
Nadira’s mother, Mrs Maulani, is also looking for answers.
“If this was negligence … we demand accountability for what happened to our children,” he said.
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