The Monitor (Kampala)

Uganda: Help Me Understand Why Money Can't Be Found to Manage Nodding Disease

opinion

Photo: James Eriku/Daily Monitor
Constant flow of saliva is one of the symptoms.

Please don't talk about rolling out action plans, waiting for results from the Centres for Disease Control or lack of funds. That analysis is far too simplistic.

What the Ministry of Health is doing, or rather not doing, to manage the nodding syndrome in northern Uganda is a blatant case of negligence. It was not just yesterday that the disease struck. This depressing sense of despair has been part of Acholi Sub-region for about four years! It is inexplicable that the ministry seems to be napping as children are nodding to their death.

In a letter to this newspaper recently, Dr William B. Mbabazi, who was part of a team that investigated the nodding outbreak in 2009, pointed out key recommendations. The research, carried out by the Ministry of Health and included WHO-Uganda, CDC-Atlanta, Mulago Hospital, Makerere University and African Field Epidemiology Network, recommended, among other things, "building the capacity of the health system in the affected districts to detect, manage or refer and report head nodding disease cases. Implementing this recommendation will facilitate determination of accurate case counts against which care and treatment will be planned, as well as counselling and psychosocial support to affected families and communities."

After Daily Monitor published a story on that report, I expected the ministry to be surprised to find itself in what some sections of the media would call 'trouble' and offer something akin to the Catholic confessions and penance. I was wrong. Dr Anthony Mbonye, the Commissioner of Health Services, came up with a classic reason for shelving the report: no funds! The ministry's Director of Health Services, Dr Jane Aceng, later appeared at a press conference "to roll out a comprehensive action plan (for the third time in a few months) on nodding disease" by February.

As the situation in northern Uganda worsens, the ministry continues to meander in its mystique. What a conundrum!

This disease has been around for more than three years. The statistics are grim. So far, a staggering 200 have died and 3,000 are affected. Looking at the agony in the eyes of the nodding children, the helplessness of their parents and the lackadaisical attitude of the Health ministry--a ministry whose mission happens to be "to provide the highest possible level of health services to all people in Uganda through delivery of promotive, preventive, curative, palliative and rehabilitative health services at all levels"--it is easy to forget the vibrant Acholi land described so vividly by Okot p'Bitek in Song of Lawino.

For a region that has endured two decades of war, the nodding disease presents another bereavement: the death of their future, which is their children. But for how long should Acholi land remain Uganda's heart of despair?

Granted; the very nature of the nodding condition does not offer viable options for specific treatment because the cause of the condition remains unknown. The rational alternative, therefore, should have been to implement the recommendations of the said report to minimise deaths. Now Dr Aceng says "We cannot have all of them coming to the centre because they don't really need to be admitted. They need to be managed from where they are."

Has the ministry even offered basic guidelines on how guardians of the sick children should nurse them? There are disturbing reports that some parents are tying their children on trees as a control measure; and the ministry thinks these children "can be managed from where they are"?

What happened to emergency response? How costly was, in the ministry's estimation, the implementation of the research recommendations that they could not request a supplementary budget given the gravity of the matter? What about taking nodding disease into consideration in subsequent budgets (after 2009, the year the study was done)? Has WHO been requested to provide technical support?

If the government can find Shs142 billion to compensate a businessman, why can't the same government find money to save lives? If MPs can approve a Shs602 billion supplementary budget, why should children be left to suffer slow, painful death? If each MP can receive Shs20 million, ostensibly to monitor government programmes moreover at the end of their terms, what is complex about finding money to rescue dying children?

It is unacceptable that needlessly high number of children have died and an even higher number practically disabled by this disease. The cost of such negligence is high and deeply disturbing. The Ministry of Health should have treated this outbreak with the sense of urgency usually given to disease outbreaks. The nodding children deserve it--as a right, not a favour.

Ms Vuchiri is a concerned citizen.

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InFocus

Nodding Disease Kills Dozens in Uganda

Constant flow of saliva is one of the symptoms.

The fatal, mentally and physically disabling disease which affects young children has reportedly claimed at least 200 lives. Read more »