Government accused of negligence over nodding disease

Grandmother seated with the grandchild suffering from Nodding disease
(Camilla Turner/IRIN)

Two lawsuits have been filed against the Ugandan government for alleged negligence in the handling of nodding disease which has killed at least 200 children since 2009 and currently affects 3,500 others, according to the Ministry of Health.

A local charity, Health Watch Uganda, has filed one lawsuit, and two members of parliament have filed a separate case. 

Health Watch Uganda has accused the government of violating the rights of affected children by not providing them with adequate health care. 

"We want government to apologize to the families of the affected and those people who lost their children to nodding disease [and] we want government to compensate the lives of the children," said Ema Dini, executive director of Health Watch.

"Since 2008, so many children aged 5-15 have been dying from the disease… The government's response has been very slow," he added. 

"It is the responsibility of the government to take care of the people, but right now they are not taking it very seriously," said Gilbert Olanya, one of the two MPs who have filed a lawsuit against the government. "[The clinics] have been opened in name but the real services have not been seen on the ground." 

At a clinic in Pader District in northern Uganda, 15 children sit or lie on tarps and blankets, eating a lunch of maize meal and beans. Many have bruises and burns on their legs and arms, injuries sustained as a result of seizures symptomatic of nodding disease, a fatal and incurable disease, which some believe may be linked to river blindness. The disease leaves its victims - mainly children - mentally and physically stunted and can cause loss of speech and even blindness.

David Nokrach, a medical officer in charge of the clinic in Pader, says it is under-resourced. There are 10 beds in the clinic but he estimates there could be up to 900 cases of the disease in the district. "I have been moving in the community and these are only a few cases. There are so many that are [still] in the community. They have been deserted," he said, adding that when the clinic first opened in March, health workers saw up to 100 patients a day.

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Nokrach says the clinic is short of medicine, and needs fortified food for patients, who are usually malnourished, with seizures often triggered when victims try to eat.

"What the national medical stores give us is so meagre. It can get exhausted within two or three weeks," he added.

Government action

In February, the government rolled out a plan to fight the disease, opening three specialized clinics and training 99 health workers, but critics say it is overdue and inadequate. The Health Ministry says lack of funding has made it difficult to implement the plan.

However, Attorney-General Peter Nyombi told IRIN his office would fight any nodding disease lawsuits against the government.

"[The complainants] are filing the suits in ignorance because I know what government has done, working together with the [United Nations] World Health Organization, researching the disease," said Nyombi. "A lot of money and food has been put aside for fighting the disease." 

In his state of the nation address on 7 June, Ugandan President Yoweri Museveni announced the launch of a mass treatment and prophylaxis programme against river blindness in an effort to eradicate that disease.

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This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions

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