By Rukiya Makuma
Without her courage nodding disease would still be hidden away in northern Uganda
She was desperate to call attention to the gravity of a rare disease ravaging northern Uganda that is crudely called “nodding disease”. Opposition firebrand Beatrice Anywar, however, never imagined how ferrying some of the affected children to the capital would turn out.
The Kitgum Woman MP first identified 10 children and made arrangements to move them to Mulago National Referral Hospital in Kampala. Then she placed an important phone call – to President Yoweri Museveni. It was a smart move.
She wanted the President to know her intentions.
“Initially the President was worried about whether the disease was contagious but when he was informed that it was not, he offered his support,” she says.
Anywar told The Independent that Museveni contributed money that enabled her to add another 15 children to the group travelling to Kampala.
On March 2, after going through numerous road-blocks and having their bus impounded by police, the 25 children and their guardians arrived at Mulago hospital. The clearance by Museveni helped as transporting the sick children was opposed in the highest medical circles including the World Health Organisation (WHO).
Three days on March 5 after the children arrived in Kampala, the WHO Country Representative, Joaquim Saweka, told journalists at the Media Centre in Kampala that it was “wrong to transport the children”.
Saweka and others ignored evidence that for three months, Kitgum, Lamwo and Pader districts had failed to get help as they battled the disease which makes children nod violently especially when given food. When the disease was still in its infancy, under their umbrella group, the Acholi Parliamentarians lobbied government for help but it did not amount to anything.
Over this period, 3,000 infected children have been registered and over 200 have died. The numbers must be higher because many cases remain unreported in this remote region with poor communication.
When media coverage escalated, the MOH announced a response plan it was supposed to roll out by end of February. It failed to take off because Shs 7 billion supplementary budget the MOH had requested to facilitate its response plan was rejected by Ministry of Finance, the training and treatment centres were not yet in place. Meanwhile, instead of stabilising as Saweka and others hoped, the infected children’s health deteriorated.
Anywar said the desperation of the situation had led people to believe that government has completely forgotten about northern Uganda because of the laxity they showed. “This disease is not new in Uganda, there had been cases in Timango in 1997 and 2009 but it was sad to see people suffering yet government did not seem to be in a hurry to act,” she said.
As early as June 2011, CNN reported a “strange medical condition” that had hit Northern Uganda and Southern Sudan. The story deeply described the disastrous condition and how it manifested itself but nothing was done at the time.
“Activities have been paused; people no longer go to the shambas because they have to stay and look after their children, yet most of them depend on farming as a source of income, children are malnourished because there cannot eat, I had requested government to provide the children with supplementary foods as a short term solution since their bodies need food but that was not heeded,” said Anywar.
Almost one year after the CNN report, the WHO and other donors continued to conduct “investigations”. Their main finding to-date is that “did not appear to suffer from seizures when given unfamiliar foods like chocolate.”
To Anywar, therefore, it was clear something drastic needed to be done.
When the children arrived at the Mulago National Referral Hospital in Kampala, tests were carried out for further research on the disease whose cause continues to elude scientists and doctors. Anywar says the samples of the children were taken for further testing by scientists from around the globe, including the Centres for Disease Control of the USA.
Meanwhile, already established as an environment-saving heroine nicknamed “mama Mabira”, Anywar has added another star to her name. “Mama nodding disease” might not sound so cute, but it captures her indelible stamp on the campaign to bring a notorious but neglected disease from the bushes of northern Uganda into the face of President Museveni and the nation.
To many her act was a sign of bravery, a sign of an understanding leader who would do whatever was in her means to help her constituents.
Within days of bringing the children to Kampala; many organisations and individuals came in to help. On March 6, President Museveni visited the children at the Acute Ward in Mulago where he committed to allocate more funds to increase research into the disease.
Christine Ondoa, the minister of Health says the Ministry has received Shs 1.1 billion from Ministry of Finance for research and management. The Office of the Prime Minister provided food to the caretakers of the 25 sufferers in Mulago until 20 were discharged on March 18. The Heath ministry trained and deployed 99 health workers who will treat children and set up three centres where all children will access treatment.
Too little help?
But Lowila Oketayot, the Woman MP for Pader says her district had 1800 severe cases of nodding disease. She says Pajule Health Centre which has been identified as the isolation centre is small and may not accommodate the overwhelming number of cases that will need admission.
Although cases of the disease have been identified in Gulu districts and the area Woman MP, Betty Aol Ochan, says it has not been included in the intervention plan. Only Kitgum, Lamwo and Pader are planned for. Ochan said people from Gulu have instead turned to herbs to treat the disease.
The cause of the disease which affects children aged 2 to 16 years is still unknown but health officials are treating the victims with malnutrition and epilepsy medications. Because infect children reject food, they are stunted and mentally retarded. Simon Fisseha a focal person at WHO says nodding disease is considered as a type of seizure disorder (Epilepsy) but its cause is still unknown. He says the disease was first reported in Tanzania in the 1960’s but a similar illness was reported from Liberia in 1983 and South Sudan in 2003. In all cases there is a high prevalence of River blindness (Onchocerciasis) and some micronutrient deficiencies. Fisseha says among other things, WHO is supporting treatment of the patients for epilepsy, has put in place bi-annual Mass treatment for onchocerciasis in the affected districts and more health workers are being trained to enable them handle the cases.There is also an ongoing research to establish the cause or link with the associated factors (Onchocerciasis, micronutrient deficiencies, or other possible causes)Fisseha says more health workers have been treated and awareness of the disease created among the public, especially the parents. He says the disease has no cure but with continuous supportive treatment it is possible to improve the quality of life and possibly reduce progression to debilitating condition as observed in some of the victims of this disease. He also says supportive treatment should include nutrition support as most of the patients have micronutrient deficiencies, mass treatment on onchocerciasis should be scaled up and there is need to mobilise the community to take the treatment as the coverage from the previous campaigns was significantly low to control the disease. Fisseha also says there is need to work with the Ministry of Education to address the special education needs of the affected children as well as continuing on the research to reach into a conclusive diagnosis on the etiology of the disease. None of these prescriptions are in place. Instead, the locals can only hope that the interventions the ministry of Health has promised arrive without Anywar having to place another call to President Museveni.