By Ventorino Otto
On Wednesday, July 30, 2022, Parliament of Uganda adopted a motion tabled by Kitgum District Woman MP Hon.
Lilian Aber, urging government to prioritize interventions into the nodding disease debacle in Northern Uganda.
In the same week, the Irene Gleeson Foundation, a faith-based NGO working with children in northern Uganda, was leading a massive mobilization of local resources to help support feeding 1,000 households with nodding syndrome survivors on the brink of starvation.
Another faith-based organization, Archbishop John Baptist Odama Foundation, is supporting the effort using the support structures it has established in the worst-hit communities.
Two and a half decades since the first cases were reported in the internally displaced people’s (IDP) camps in Kitgum and Pader districts in then strife-torn northern Uganda, the exact cause of the nodding syndrome remains largely unknown today.
The only scientific progress that has been made is that experts have determined it is a neurological disorder and that the nodding of the head forward in the survivors is triggered by abnormal brain activity which results in a brief lapse in neck muscle tone.
Once affected by the condition, the child survivor gradually becomes disoriented and may eventually lose cognitive functions, irreversibly altering the child’s behaviour.
About seven percent of the cases diagnosed have resulted into deaths, mainly from falling into rivers or fires, as the seizures they frequently suffer make them very prone to accidents.
Since 2009, the year the Ministry of Health formally regards as the time the disease was discovered in northern Uganda, government has instituted some measures not only to increase understanding of the debilitating condition afflicting these children but also to mitigate its effects.
In 2012, the government hosted an International Scientific Meeting on Nodding Syndrome in Kampala which gave birth to the formation of an inter-ministerial national task force and district task forces.
A training manual on Nodding Syndrome was developed and primary healthcare professionals, including VHTs, trained on case diagnosis and clinical management.
Efforts to mainstream the disease into the public health system saw nodding syndrome treatment and rehabilitation centres and facilities, some of them managed by non-state actors like Hope for Humans (HfH), established at public health units and other places in the hardest-hit districts.
Critical data and information to inform unfolding responses were gathered by surveillance teams based at district health facilities. The teams were even equipped with vehicles to facilitate their field work. There were signs the country would soon be on top of the then impending health crisis.
The first set of official responses to the nodding syndrome valued research as a vehicle for realizing a solution to this enigmatic affliction. Therefore, various researches by local professional researchers in collaboration with international research partners were authorized and resourced to gain deeper understanding of the phenomenon and further inform scientific management of the syndrome.
These researches had already begun to produce achievements. For example, a combination of clinical research findings and facility-based rehabilitative care has strongly demonstrated that, although the cause of the nodding syndrome is still unknown, it is a treatable neurological disorder.
This finding, so far, should be a basis for both hope and further research-based action.
The record of the government of Uganda in spearheading the national response to disease epidemics is not bad. Its responses to the HIV/AIDS epidemic, then the Ebola outbreaks and, recently, the COVID-19 pandemic have been comprehensive, spontaneous and sustained.
In contrast, the national response to the nodding syndrome in northern Uganda has been slow, under- resourced, knee-jerk and poorly coordinated.
As the discussions generated by the recent nodding syndrome motion Hon Lilian Aber (Woman MP, Kitgum) moved on the floor of national parliament have revealed to the country, most, if not all, the positive actions that government had taken to understand and contain the intriguing nodding disease syndrome have almost ground to a halt since 2018.
In the worst-hit districts, the evidence of this apparent lack of government support, political will and direction is glaring. For instance, t he vehicles that had come to be known as “nodding syndrome vans” now stand on stones in the parking yards of public health facilities; monuments to lack of resources to run and maintain them.
Both the public and non-state facilities that had been put up specifically to provide clinical and rehabilitative care to the survivors stand empty and dejected. In Tumangu near Kitgum town where the government had built a nodding syndrome centre, the bush that had overgrown the partially dilapidated facility was only cleared days before the visit of the Prime Minister during the IGF Charity Walk.
The NS manuals that had been developed lie on the shelves, gathering dust and browning. The frontline health workers whose capacity in surveillance, diagnosis and treatment had been built are wondering whether their expertise will ever be used again.
Non-state interventions by development partners, like Hope for Humans, have fizzled out mainly due to lack of required resources. Even the billion plus shillings Parliament appropriated in 2018 for nodding syndrome activities remain unaccounted for.
The immediate casualties of all this apparent government inaction and errors have been the children with nodding syndrome (CWNS) and their caregiver households.
Since the first cases were identified more than twenty years ago, the number of CWNS has risen to more than 3,500, according to community volunteers and the Archbishop John Baptist Odama Foundation that has now opened a care centre in Kitgum.
The Ministry of Health is yet to formally ascertain these “new” prevalence figures community workers are reporting.
The prevalence figures may appear very high yet they do not carry the pain and utter deprivation that these survivors and their caregiver households go through. The breakdown in access to clinical treatment means these children suffer more frequent seizures, making them more prone to accidents and even deaths.
The worsening food security situation in rural northern Uganda occasioned by multiple factors, including climatic and economic conditions, has left these households in nutritional quagmire.
Without what to eat, many of the CWNS are just slowly wasting away. It is difficult for the members of the caregiver households to engage in productive activities away from home because they need to be around these nodding children twenty-four hours lest they wander away into the wilderness or into the way of danger.
Out of desperate attempt to find time to earn a living out of home, some caregivers have resorted to tethering these children on trees at home like goats. This is degrading and inhuman and must not be allowed to continue.
The population in Acholi is watching and forming opinions. Speculations are rife in and outside the affected communities. The majority verdict seems to be that the government is not doing enough, not just because it lacks the resources but because it does not want to do much.
For example, sometime in 2014, some nodding syndrome patients and samples drawn from those who had died of the condition were flown for tests at the prestigious Centre for Disease Control (CDC) in Atlanta, US but, to date, there is no clear report of the results of the tests neither is there any significant progress made towards finding a cure.
The ordinary people in affected communities have perceived all these as conspiracy against them in which government is an accomplice and this has provided fertile ground for conspiracy theories to thrive in Acholi. Some say the syndrome is a viral infection; others say it a chemical fallout from the heavy artillery used in the wars in southern Sudan and northern Uganda.
Yet others say it came from the food aid or the vaccines people received over the years in the IDP camps or could have been contracted from eating bush meat or using contaminated water. Political conspiracy theorists go even farther: and point fingers at a hidden plan by the State to gradually wipe out “northerners”. Utter anxiety and resentment permeate these afflicted communities.
Of course, the conspiracy theories can be contested but what is no longer contestable is that the nodding syndrome debacle is not just a public health emergency; it is a human rights crisis unfolding in Acholiland. And as such, the government has a constitutional mandate to prioritize and reinvigorate the national response strategy that had already been crafted.
Ugandans must, together, say the CWNS and their caregivers deserve a life of dignity. The nation must be mobilized to view the nodding syndrome as a matter of national importance; not as an issue for just Acholi or northern Uganda.
In this regard, the government must urgently revisit the key recommendations of the 2012 International Scientific Meeting on Nodding Syndrome held in Kampala. The scientists recommended a community-wide syndromic and holistic approach to nodding syndrome case management focusing on controlling seizures, providing nutritional supplement in malnourished CWNS and psychosocial support for the affected children, families and communities.
For long-term case management, the meeting identified cognitive, physical and/or rehabilitation therapy. The national and district parliaments and the international community must look for resources to fund the resumption of these recommended interventions.
Experience demonstrates that epidemics all over the world have been beaten by political goodwill and actions. Yet it has been evident that in the last four or so years, the voice from the national political leadership here has been swallowed up in “newer” epidemics and other “economic emergencies”.
We therefore urge the political leadership, from up the Presidency and the Cabinet down to the district chairpersons, especially those of the worst-hit Acholi districts, to put the nodding syndrome back up their political agenda.
More resources must be urgently directed towards nodding syndrome activities and, like with all public funds, there must be very strict value-for-money accountability.
The President and the Speaker of Parliament must use their appropriation and oversight roles to demonstrate to the thieving bureaucracy that failure to account for funds appropriated for nodding syndrome activities attracts severe punishment as prescribed by the relevant laws.
True, nodding syndrome has no definitive cure but, with clinical diagnoses, it has been demonstrated that it can be managed case by case. In the various specialized facilities that had been set up, clinical researchers used anti-epileptic drugs to achieve favourable treatment outcomes with NS patients.
Other suspected cases of NS have been treated with supportive treatment using Carbomazepine, Phenytoin, Folic acid and Phenobabitone tablets. Although not cures, this clinical breakthrough in managing cases only needs renewal of commitment from government to drive its resumption and continuation.
In the long run, the sustainability of all these interventions to contain the scourge will hinge on the stability of the livelihoods of their caregiver households.
Unfortunately, a majority of these households are severely impoverished, unable to unlock themselves from the shackles of the vicious cycle of deprivation and dependency as their caregiving role ties them down in the home day in day out.
A multidimensional and participatory approach must be taken to strengthen their livelihoods sustainably. This may require that CWNS whose clinical and cognitive conditions have deteriorated severely are moved away to institutional care in the specialized centres that shall be revived or established anew.
But central government alone cannot achieve the desired outcome. Local governments of the affected districts must critically play their appropriate roles in this, including allocating budgetary resources for nodding syndrome and ensuring the proper coordination of the national response.
Local communities, too, must respect the rights of the survivors of the nodding syndrome, including their sexual and privacy rights, and ensure that the perpetrators of any abuse against these children afflicted by the condition are punished.
There is need to re-weave the social safety net that traditionally supported the disadvantaged and suffering members of society. All of us have to work together to reduce the stigma and other negative behaviours exhibited towards the survivors of this condition and their households and ensure that they are treated as important members of the community.
The writer is a civil society advocate and media commentator in northern Uganda