THE REPUBLIC OF

MINISTRY OF HEALTH

STATEMENT ON NODDING SYNDROME IN NORTHERN UGANDA

HON. DR. JANE RUTH ACENG

MINISTER OF HEALTH

1 Lately, the media has been awash with stories on Nodding Syndrome in Northern Uganda highlightingthe appalling situation of the children affected by the disease in the districts of Kitgum, Pader and Omoro.

The Ministry of Health would like to clarify on the following issues as raised in the media:

GOVERNMENT’S INTERVENTION

Government’s intervention on nodding syndrome commenced in 2012 with establishment of an inter-ministerial committee coordinated by the Office of the Prime Minister under the Department of Relief, Disaster Preparedness and Refugees.

Various Ministries, Departments and agencies were assigned roles according to their mandates, strategies were developed and interventions commenced in the affected districts.

The committee assigned Ministry of Healththe roles of; clinical management of cases,provisionof therapeutic feeding for the severely ill and malnourished in a health facility set up, strengthening surveillance at community and health facility levels, conducting research into nodding syndrome to ascertain the cause, mode of transmission and treatment and vector control.

The burden of the Nodding Syndrome by District currently stands at; 806 in Pader, 544 in Kitgum 339 in , 323 in and Omoro (curved out of Gulu), 58 in Amuru, and 13 in Lira, making a total of 2,143 cases to date

In 2012, Ministry of Health activated three treatment centers in the 3 districts of Kitgum, Lamwo and Pader. The number of health facilities was further increased to 7 in 2013, covering the districts of Gulu, Lira, Amuru and Oyam when nodding syndrome cases were identified in these districts following surveillance. Outreach services were also activated where health workers were required to go to the villages to screen and provide counselling and treatment for the affected children. This was in a bid to reduce the challenges of accessibility to the health facilities due to long distances. Thechallenge of long distances was further addressed by rolling treatment services down to all sub county health facilities in 2015 (Health centers III’s and II’s) where children with nodding syndrome are found.

2 The following centers now receive direct allocation of medicines from the National Medical Stores for treatment of Children with Nodding syndrome; Atanga, Laguti, Lapul, Angagura and Awere in Pader, Kitgum General Hospital, Pajimu, Okidi and KitgumMatidi in Kitgum,Padibe HCIV, PalabekKal, Palabek Gem and PalabekOgili in Lamwo),Odek HCIII in Omoro, Atiak HCIV in Amuru, Aromo HCIII in Lira andCwero, Labworomor, Paibona and Omel in Gulu, giving a total of 20 treatment centers.

An additional 13 health center II’s are supplied with medicines from the Sub county HCIII’s to caterfor those families who still find difficulty in accessing the treatment centers; these include 10 facilities in (Lapulocwida, Burlobo/Acwa ranch, Angole, Bolo, Lagile, Kilak, Puranga, Amilobo, Wipolo and Paibwo), 1 in Kitgum (Tumangu) and 2 in Lamwo (Anaka and Apyeta), making a total of 33 facilities providing medicines. The supply of medicines is adequate in all the treatment centers. The supply of medicines to Kitgum General Hospital where the research is centered, was enhanced because of increased consumption as a result of the research that is ongoing and recruitment involves patients from both Kitgum and Pader districts and others that consent.

WHAT IS NODDING SYNDROME

Nodding syndrome is a severe neurological disorder that manifests as seizures, head nodding, cognitive impairment, multiple disabilities and affects children. A child is said to have nodding syndrome if:

1. The child develops involuntary drops of the head to the chest at a frequency of 5 to 20 times per minute on two or more occasions in a previously normal child 2. Age of onset is between 3 and 18 years 3. Has other neurological problems in addition to the above for example cognitive decline, behavioral problems or seizures or neurological abnormalities 4. There may be stunting or wasting or severe malnutrition. 5. Brain imaging shows varying degrees of brain damage ranging from mild moderate to severe

3 These signs and symptoms can be identified and graded by a trained health worker.

Many a times cases of epilepsy and other conditions that affect the nervous system- like febrile illnesses, inborn abnormalities or autism have been wrongly labelled as Nodding Syndrome. I will highlight a few differences;

Epilepsy affect all ages, patients do not have head nodding, they exhibit moderate to severe disability and brain damage is not common, and sometimes may be inherited whereas Nodding Syndrome affects only children, is characterized by head nodding, seizures, moderate to severe disability, brain damage is common and cannot be inherited.

Following research, Nodding Syndrome has been characterized in five stages depending on the severity:

Stage one presents with no significant disability, while stage two is characterized by slight disability, but patients are able to look after themselves without assistance. These form 21% of the cases in Northern Uganda.

Stage three and four are characterized by moderate to severe disability, varied cognitive function and children may require help with walking. These form 74% of the cases in Northern Uganda.

Stage five which is the most severe stage presents with severe disability, and these are mostly bed ridden children. They form 5% of the cases in Northern Uganda.

I would also like to mention that in all stages, there is some degree of brain damage and this increases in magnitude depending on the stage. All cases in stage 5 and a few in stage 4 require rehabilitation.

According to our statistics, Patients who fall in stage 5 are currently as follows; 8 cases in Kitgum, 20 cases in Pader, 5 in Amuru, 1 in Lamwo and 20 in Omoro. Giving a total of 59 cases, nearly half of them having passed on. Trained Specialist from Gulu Regional Referral Hospital have been following these cases in addition to regular visit by health workers from the districts. We continue to carry out surveillance and search for those who may not have been identified and registered.

4 SURVEILLANCE

As a means to scale up surveillance of Nodding Syndrome cases, the Districts appointed District Nodding Syndrome coordinators who work in collaboration with the District Surveillance Focal Persons to monitor and categorize cases of nodding syndrome and epilepsy in the communities and refer them to the nearest health facilities. The work of these officers is supported by the village health teams who register all cases and report accordingly.

From our statistics and reports from the districts, no new case of nodding syndrome has been reported since commencement of interventions against Nodding Syndrome in 2012. New cases that have been reported as nodding syndrome have turned out to be cases of Epilepsy and sometimes febrile convulsions after verification and classification by the trained health workers. However, all cases irrespective of diagnosis are receiving treatment as per the guidelines that are holistic and encompass all

DEATHS

Regarding deaths that have occurred and those reported in the media, the Ministry of health wishes to clarify as follows;

The total numbers of deaths to date stands at 137.

Overall, there have been no deaths registered in Oyam, Lira and Gulu districts.

• has registered 4 deaths which occurred between 2016 and 2017, • has registered 10 deaths which occurred between 2012 and 2017. • has registered 33 deaths, most of which occurred between 2012 and 2014. In 2015 Kitgum district lost 3 cases, 4 in 2016 and 1 in August 2017. Kitgum General Hospital being a referral center, receives very ill patients who usually arrive in the late stages and severely ill. • registered 9 deaths between 2015 and 2017. • While Pader district has registered 81 deaths to date of which 6 were at health facility and the rest in the community. (2012 - 6 deaths, 2013- 11

5 deaths, 2014- 23 deaths, 2015- 29 deaths, 2016- 9 deaths, 2017- 2 deaths and 2018 -1). This current death occurred last Wednesday. Thepatient had relatively improved but unfortunately he drowned in the river where he had gone to play

The common causes of deaths are infections following severe burns, severe malnutrition, aspirations following continuous seizures (Status Epilepticus) and drowning when left unattended.

FUNDING TO THE DISTRICTS

To date a total of 1,851,891,500 Ug. shs has been transferred to the 6 districts of Kitgum, Lamwo, Gulu, Pader, Amuru and Oyam and 2 Regional Referrals Hospitals of Gulu and Lira for the management of nodding syndrome. These funds are for;

• Fuel for the outreach vehicles • Vehicle maintenance • Allowances for health workers for outreaches • Community surveillance • Search for those lost to follow up • Provision of food, in the case of

To date 1,614,496,500 Ug.shs. has been utilized. However, accountability for the funds has been poor with over 237,396,000 Ug. Shs unaccounted for. Kitgum district is the biggest defaulter with over 109,311,860 million shillings not accounted for, followed by Lamwo district.

One Hundred and thirty-three million Ug. Shs (133,000,000) was approved this financial Year 2017/18 for management of Nodding syndrome. 73, 730,000 Ug. Shs has already been processed for transfer to the beneficiary districts and facilities.

PROVISION OF FOOD

Ministry of Health provides funding to procure food for only those patients who have been admitted (In patients). This is provided through a contractor hired by the district that hosts the major referral and treatment center. Kitgum General Hospital

6 was designated as the major referral, treatment and research center and it’s the only center that distributes food as well as provides therapeutic feeding for the severely malnourished who are admitted.

All the other children in Stages 1 to 4, who are mobile pick up their food from three treatment centers when they go for drug refills. These are Atanga HCIV in Pader, Kitgum General Hospital in Kitgum and Palabekkal HCIII in Lamwo. Food is provided by the office of the Prime Minister, Department of Relief, Disaster Preparedness and refugees. Food was last delivered between September to November 2017. Provision of food to the households of the affected Children and support to the communities is also handled by the Department of Relief and Disaster preparedness.

RESEARCH

Ministry of Health in collaboration with partners have conducted over 14 researches into nodding syndrome. These have guided the implementation of the interventions that are currently being undertaken. The results of these researches were released to stakeholders in a meeting held in Pader District in December 2015 and on the floor of Parliament early last year 2017. The results of these researches have also been published in various journals.

The Genetic Studycarried out in collaboration with Centers for Disease Control and National Institute of Health of the United States gave us some good results and insights into the cause of nodding syndrome This study was undertaken on a family that was taken to the National Institute of Health in the United States. The results of this study suggest that Nodding syndrome may be an autoimmune disease, in which the immune system incorrectly attacks the body’s own proteins. The immune system creates antibodies to fight off the parasite following infection with Onchocerca volvulus. However, those antibodies also bind to a protein that is present in the brain cells so the immune system–incorrectly–will attack brain cells that contain that protein, which can result in symptoms of Nodding syndrome.

These findings are already published in the Journal of Science Translational Medicine, 2017.

7 The current running research being undertaken by experts from Makerere University, Mulago hospital, Oxford University in the United States and Ministry of Health is the “Doxycycline and Nodding syndrome” study. This is aimed at finding treatment and understanding the mechanism of the disease progression. The results of this study are expected in 2019/2020.

VECTOR CONTROL

The vector that is associated with nodding syndrome is the Black Fly which through its bites transmits a worm called onchocerca volvulus which causes river blindness or onchocerchiasis

Vector control was heightened in the affected districts where Ministry of Health undertook the exercise of aerial spraying in 2014. This was followed by ground river dosing; an intervention that has registered immense success in the control of the population density of the black fly. Assessment of breeding sites at Apyeta bridge in Lamwo, Abam and Otwara point in Kitgum, Aruu falls and Pabit in Pader shows a reduction of population density by 100 %. Only Awere bridge site registered a 76% reduction, and remains under close monitoring.

The sites were also assessed for larval density and all registered a reduced of not less than 90% on average.

Mass Drug administration with Ivermectin has continued to be provided on biannual basis. The uptake has greatly improved with a coverage of between 75 % to 90% in some districts.

With the above interventions, we expect to reduce transmission of the river blindness worm that is also associated with Nodding syndrome.

REHABILITATION

Two private rehabilitation centers; one at Aromo Wanglobo in Omoro district and the other at Tumangu in Kitgum district were constructed by an NGO called Hope for Humans, run by a one Dr. Suzzane Gazda. These rehabilitation centers were funded and managed by the NGO until 15th December 2017 when it was closed.

Ministry of Health awaits a formal hand over of the centers to the District Local Governments. Following which further engagement with the districts and Ministry

8 of Gender, Labour and Social Development will be held to reactivate the centers for rehabilitation purposes. Rehabilitation will require social workers and families to train the clients to be independent on basic activities of daily living and visits by specialists in various areas of speech, hearing, eye sight, physical deformities, dental caries.

Ministry of Health would like to reiterate its firm commitment in managing the medical component of Nodding Syndrome as well as conclude on the much required research.

I thank you,

FOR GOD AND MY COUNTRY

HON. DR. JANE RUTH ACENG

MINISTER OF HEALTH

5thMarch 2018

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