Parliament’s committee on health has petitioned the Government to fund scientific research studies on nodding disease syndrome to ascertain its causes and protect the victims.

Committee chairperson Charles Ayume says the first case of nodding syndrome was reported more than 15 years ago, but available literature does not point towards its definitive causative agent.

“The Ministry of Health should continue scientific research to establish the exact cause of nodding syndrome and consequently preventive and curative measures. This should include resource allocation for research and treatment,” Ayume says.

The legislator made the call while presenting a committee report concerning a field visit to Acholi region to assess the prevalence of nodding syndrome.

The report tabled before the House on Wednesday, February 14, 2024, covers the districts of Gulu, Pader, Omoro, Lamwo and Kitgum, which are the most affected by the syndrome.

Call for financial support

The committee observed that nodding syndrome patients require a well-balanced diet and nutritious food that is given timely, which is estimated at shillings 32.4 million monthly for about 30 persons.

Ayume noted that families of the patients could not afford to feed the victims as estimated, adding that with poor nutrition, their condition would worsen to the extent of severe neurological deficits.

He proposed financial support to affected families by the gender ministry, drawing from the example of the monetary support to the elderly under the Social Assistance Grants for Empowerment (SAGE) programme.

“This can be costed annually based on the number of nodding syndrome patients per district and money disbursed to the respective local governments. The exact number of patients and homes affected should be established,” Ayume said.

The committee also proposed continuous training of Village Health Teams (VHTs) to enable them to act as a first point of care, and also deliver drugs to patients deemed to be clinically stable.

Noting that rehabilitation centres in Omoro and Kitgum districts were closed due to a lack of counterpart funding from the Government and a depletion of support from donors, the committee recommended that rehabilitation services should be integrated into surrounding health facilities.

The committee praised efforts by Prof. Richard Idro and Dr Sylvester Onzivua in researching the nodding syndrome. 

“This has provided a lot of valuable information but also earned them international awards in science,” Ayume said.