Government on the spot over nodding disease

Friday January 20 2012

Locals attend to a child who was affected by the nodding disease.

Locals attend to a child who was affected by the nodding disease. Photo by Agatha Ayebazibwe 

By Agatha Ayebazibwe

The escalation of the nodding disease syndrome in northern Uganda could have been avoided if government had implemented research recommendations availed to it in 2009 by health experts, Daily Monitor has learnt.

Information obtained by this newspaper indicats that following initial reports on the disease more than three years ago, a comprehensive study was conducted by a joint team of experts from the Centre for Disease Control (CDC), World Health Organisation (WHO), Mulago National Referral Hospital and Makerere University in December 2009, but their findings and recommendations were shelved by the Ministry of Health.

In a detailed report to government titled “Head Nodding Disease Investigation in Kitgum District,” a copy of which Daily Monitor has obtained, specific interventions were recommended that if incorporated, the strange disease would have been controlled in its early stages, a doctor who was part of the study said yesterday.

The government was for instance required, more than three years ago, to build the capacity of the health systems in the affected areas, especially by training health workers to detect, manage and report head nodding disease cases and determine an accurate case counts against which care and treatment would be planned.

Other recommendations included securing specialised care and treatment centres for the nodding disease in the affected counties and to determine the best or combination treatment options to control the head nodding episodes.

The government was also expected to obtain more in-depth understanding of the disease and the possible causes, ensuring availability of medicines and supplies needed for care and the treatment of head nodding symptom.

The report also asked government to provide nutritional rehabilitation for victims, offer counselling and psychosocial support to affected families and communities.

Nothing done
To-date, no concrete effort has been made by government to implement the recommendations. Unfortunately, hundreds of lives have already been lost, and hundreds of other victims and their families have been subjected to devastating levels of pain and distress, while government still appears uncertain and contradictory in its response to the disease outbreak.

According to the study, by December 2009, more than 152 families in 39 villages registered signs and symptoms of head nodding. However, 75 per cent of the verified cases were from 12 villages; Tumango 40, Okidi Central 20, Abamu 19, Anyuka 14, Laraba 13, Awere 11, Beyogoya 10, Pawena Camp and Labworomoro 6, and Adye, Alima and Anaka villages with 5 cases, respectively, all in Kitgum District.

The numbers have since increased from 190 cases verified then to more than 1,000 in Kitgum. According to Dr William Mbabazi, who was part of the team at the time of the research, the cases of the disease would have been significantly minimised if the ministry had implemented their recommendations.

“The Ministry of Health leadership prioritised the quest for head nodding disease causation and therefore negated all the recommendations in favour of research led by CDC, which would have otherwise controlled the spread of the disease,” Dr Mbabazi said.

However, to-date, nothing has been done as ministry officials say they are yet to do something about the disease that is threatening the next generation in Acholi Sub-region.

Inadequate funds
But the head of community health in Ministry of Health, Dr Anthony Mbonye, said proposals were not implemented because of lack of funds, saying most of them required huge sums of money that the ministry did not have.

The Acholi Parliamentary Group chairperson, Mr Reagan Okumu, described the Health ministry and government’s decision to ignore the recommendations as negligence and a political conspiracy against the region.

“The Ministry of Health owes the nation an apology for not responding as expected for any emergence cases such as the nodding disease that has left many children nodding to death,” he said.
During the two-week 2009 survey, blood and food samples were also collected and taken to CDC, Atlanta for further studies in a bid to find the cause of the nodding syndrome.
Partial results released a year after, however, did not show any clue as to what caused the disease and how it spread.

Symptoms of nutritional problems and traces of river blindness dominated the results. The final results have not been released as promised early this month, a delay which according to Mr Okumu, raises so many concerns over what CDC could have found out from the samples taken.

Although the 2009 survey found out that 83 per cent of the cases verified were suspected to have eaten bush meat, no conclusive evidence has been found as to verify the theory that the said bush meat could be the cause of the disease.

Facts from the report show symptoms of the head nodding disease developed in a chronological order with the initial stages being triggered by the sight of food or cold weather that culminated into head nodding for 2-3 minutes in the first three months, then drooling saliva whenever under attack.

Report facts
And the last stage, the worst where nodding and drooling are replaced with spontaneous seizures, the report adds. The child then becomes malnourished with sunken eyes, swollen cheeks, prognasthic and hypertrophied gums which seem too big for the lips to cover so the child is open-mouthed with the tongue protruding.

Early this month, Ministry of Health officials visited the affected areas for the second time but something is yet to be done. The State Minister for Health, Dr Richard Nduhura, had earlier said Cabinet would sit to find a way forward.

Our efforts to get a comment from both ministers were futile as both of them neither received nor returned our calls. They are in Kyankwanzi for a two-week NRM caucus retreat. More than 3,000 cases of nodding disease have been registered since 2009 in the districts of Lamwo, Kitgum, Pader and the latest being Gulu districts.