Will the nodding children receive an education?

BY RACHEAL NINSIIMA

Walter Ojok should be enjoying his life as a school-going teenager and looking forward to becoming a professional, but he is not. Instead, he lies helplessly nude on a stack of dry reeds peering at his siblings and the grass thatched roof of their hut, deciphering nothing.

Ojok cuts a figure of a four-year-old, yet he is 14 years. His chest is raised, his back slightly bent and body miserably thin. His eyes are teary and although he should be able to construct intelligible sentences, all he ever says is, ‘wota…wota…’ as if trying to pronounce his name. 

Walter Ojok (L) is one of the hundreds of children who are not attending school because of nodding suyndrome

Ojok is afflicted with Nodding Syndrome (NS), an unexplained neurologic condition characterised by episodes of repetitive drooping of the head, especially at the sight of food, often accompanied by seizures such as convulsions or staring spells.

His mother, Alice Akwero let me into the story of his life.

Ojok was born normal, though under difficult circumstances in Awere camp, a safe refuge from the Lord’s Resistance Army (LRA) rebels who had ravaged northern Uganda with murder, rape and torture.

Plagued with limited water and food supply, Akwero and her husband, Charles Odong, stealthily scavenged different places for something edible to feed their first born child. Meanwhile, unknown to them, an ailment was brewing in young Ojok’s body.

“At the age of eight, he started getting convulsions and when we would give him food, he would nod his head for about an hour and drooling became the order of the day,” his mother recollects.

In vain, she tried to make him walk and talk and fruitlessly tried to convince her fellow settlers that her son was not bewitched. Ojok was the first child to display these unique symptoms in Awere camp.

EXEMPTED FROM EDUCATION

Although his parents would love their child to go to school, he couldn’t because of his condition. After they left the camp in 2007, his mother charged her three other children, Gloria Adong, 8; Francis Kidega, 6, and Nancy Piloya, 3, with staying home and looking after Ojok.

This was because Ojok was susceptible to falling into the cooking fire or drowning when he got a seizure or wandered off. For the four children, education is now but a mere dream. But so it is for Kenneth Oluba and his sister Gloria Lanyero.

Oluba, 14, loves to clap without music. His dream to study was throttled at six months when he was afflicted with the syndrome, a condition that has left him mentally and physically impaired. He can neither speak nor write. He has never been to school because of this condition.

“I have lost hope in the life of my son. He forgets easily, tends to be aggressive at times and does not like to eat. He can do nothing on his own,” Jimmy Ochan, his father said.

So Lanyero has to keep watch over Oluba everyday. This is the situation for the over 300 children suffering from Nodding Syndrome in Odek sub-county, 94kms east of Gulu town. Odek is Joseph Kony’s (the leader of the LRA) home area.

The dreadful fate for many of the children is death and being maimed for life as they are prone to drowning and falling into fires.

Inadequate specialised teachers is a serious bottleneck for all the afflicted children, including the lucky few who have managed to attend school at Hope for Humans Centre, the only rehabilitation centre in Gulu district. The centre, located in Aromo-wang Lobo village, is a US-based non governmental organisation and only has two special-needs teachers who handle 40 children.

HARD LESSONS FOR TEACHERS

Teacher Auma with one of the pupils at the centre-Phiona

Lillian Auma describes her work as a special-needs teacher, as a calling from God.

“It takes bouts of patience, understanding and humility to teach these children. They have a short and slow memory,” she says.

Auma has been a teacher at the centre since its inception in August 2012. She recalls that at the start, there were constant fights amongst the children and they paid no attention to the teachers at all.

Although they have been rehabilitated through counselling, the effects of the disease are still ox-strong. 

Teacher Auma (standing) helps Ketty Adoch,one of the children at the center read a book

On the day I visited Patrick Ojok, one of Auma’s pupils pulled off a blank stare and seemed disinterested in what she was struggling to emphasise in class. Donned in a uniform made up of a checked brown shirt and dark brown shorts, complete with worn out slippers, he sat quietly peering through the classroom window.

To capture his attention, Auma broke in her stride and came closer to him. However, like a lifeless pillar, the 14 year old did not move an inch. He kept his gaze on what was happening externally. When she tapped him, it was to no avail until she gently took him by the arm, led him through the narrow space between the wooden desk and bench, and brought him to the front of the class. Then, she had his attention!

Auma started a jolly song in Acholi − the language spoken in Gulu − and succinctly, Ojok joined in, shaking his head slightly side to side, moving his diminutive body to the augmenting rhythm of the song. His clapping came in intermittently.

While they were still at it, Ketty Adoch, his classmate, fell to the ground. She started drooling and shaking violently − she had suffered a seizure.

“The children get seizures anytime and this distracts the lesson because others focus on the one who has gotten an attack,” Auma says.

Adoch’s left hand was maimed by a seizure that threw her into a fire last year. She lost her five fingers and the flexibility of one hand.

To rest the children after a seizure, three beds have been provided and are always on the ready at the back of the classroom. 

Teacher Auma helps a child who has gotten a seizure

 NO CURE YET

The cause of Nodding Syndrome has eluded many epidemiologists and although they have associated it to the black fly-borne parasite, onchocerca volvulus that causes river blindness, investigations remain inconclusive.

To manage the syndrome, the ministry of Health last year procured more than one million tablets of the generic anticonvulsant-sodium valproate on recommendation from the World Health Organisation (WHO) and US Centres for Disease Control and Prevention (CDC).

Moresco Komira, the in-charge of Odek Health Centre III, said the drugs have largely reduced the number of seizures from an average of eight to three per day and the duration of the head nodding. Nevertheless, new cases and deaths have occurred.

Since the year begun, three children from Lamola parish in Gulu have died.

According to the 2012 records from the office of the director general at the Health ministry, there are 3,094 cases of the Nodding Syndrome in the northern districts of Lamwo, Kitgum and Pader where the disease was first discovered and 17 deaths have been reported since 2005. 

Pupils help their colleague gain balance after recovering from a seizure

 THE GENESIS

Nodding Syndrome was first noticed in Kitgum district in 2003, and described as a progressive disease characterised by nodding of the head, mental retardation and stunted growth.

Further investigations by the Health ministry revealed that the syndrome was a new type of epilepsy that was reported to have affected at least 3,000 children in the districts of Kitgum, Lamwo and Pader in northern Uganda. It was later discovered in Gulu, Amuru, Oyam and Lira districts. Trigger factors have been identified as cold temperatures and familiar food.

Before its discovery in Uganda, the syndrome had been identified in the South Sudanese communities of Maridi and Witto and in southern Tanzania. However, there is limited data available on the magnitude of Nodding Syndrome and no systematic prevalence-assessment has been undertaken in those countries so far.

Although scientists so far believe that Nodding Syndrome is not transmissible from person to person, the community is still convinced that it is contagious and many families keep their children from interacting with those that are afflicted.

NEW RESEARCH, FRESH CHALLENGES

In a new study on the causes conducted by Gulu University, it has been discovered that malnutrition and metabolic acidosis (a condition that occurs when the body produces too much acid) are the two major factors affecting the children.

Dr David Kitara, a researcher and senior lecturer at Gulu University is however afraid that research efforts have not been considered.

“Gulu University has written over 10 proposals to MoH, CDC and WHO since 2011 but no funding has come through and yet more studies are being conducted at individual level,” he said.

Dr Bernard Opar Toliva, the national coordinator of the Nodding Syndrome Response in the Health ministry however says the ministry has only approved 13 reports and four are yet to be funded. Gulu University’s proposals are excluded.

“These reports have been approved because of their scientific efficacy and prospect that the information they have will influence the management of the disease,” Dr Opar said. He added that the process of receiving the funds is bureaucratic, hence the delays.

Also, limited health staffs are hindering health units from reaching all suspected cases and the medicines are running out, according to Komira.

“The ministry is currently involved in the spraying of rivers and water bodies in an effort to get rid of the black flies and is planning on integrating the syndrome in the routine health care system,” he said

BUT THERE IS HOPE FOR HUMANS 

Kimberly Hoover relaxes with with one of the children afflicted with nodding sydrome at the Hope for Humans Center

In August 2012, Dr Suzanne Gazda and Dr Sally Bayton established the Hope for Humans, a centre that offers psycho-social support to children afflicted with Nodding Syndrome and their parents. It provides access to healthcare, nutrition, medication and special needs education to 40 children in the full time programme and 30 others on outreach.

“Before the centre started, some parents used to leave their children tied to trees to prevent them from wandering off while others were tied to the carriers of bicycles as their parents took them to receive medication,” Collines Angwech, the director of operations said. 

Jessica Lup, a visitor to the Hope for Humans exchanges pleasantries with one of the children undergoing rehabilitation at the center

Today, Oluba, Ojok and 300 have the privilege of accessing these life saving anticonvulsants from the centre within their homestead’s reach, while 40 others, including Adoch, are learning to read, write and partake of three meals a day. 

Angwech adds that the centre is also engaging the parents in making beads and bags to help them earn an income. Nevertheless, challenges of limited security and inadequate psycho-social support throughout the district still loom over these children’s future.

Drug giants move in to block generics

Civil society organisations dealing with intellectual property rights have mounted a spirited attempt to block the European Union and US from introducing stringent patent rights that would block access to generic life-saving medicines.

A generic drug is a copy of a brand-name drug whose patent has expired. It is sold at a significantly lower price than the branded drug. In Uganda, 90% of all drugs are generics.

Denis Kibira, a medicines expert and advisor at Higher Education Partnership for Sustainability (HEPS-Uganda), says stringent patents could spell a death sentence to thousands of people living in poverty, who face life-threatening illnesses such as malaria, TB and HIV/Aids, as they would not be able to afford expensive, patented drugs. 

A nurse searching for dugs in a cabin-PHOTO/COURTESY

Currently, of the 1.3m people living with HIV in Uganda, 630,000 require anti-retroviral drugs (ARVs) and of these, 150,000 are children. The gap between supply and demand means that many Ugandans are unable to get the life saving ARVs even when they need them.

Trading away lives

As a member of the World Trade Organisation, Uganda adopted the Trade Related Aspects of Intellectual Property (TRIPS), a requirement to implement high standards of legal protection and enforcement of intellectual property rights of the original producer of a product.

According to the TRIPS agreement, least developed countries (LDCs) are supposed to enforce patents on all medicines by 2016. This would mean the end of all generic drugs. Patents guarantee the right to exclude others from making, using, offering for sale or selling the invention for 20 years from the date on which the application for the patent was filed.

But an interpretive statement of TRIPS, the Doha Declaration issued in November 2001, indicates that TRIPs should not prevent states from dealing with public health crises. It lifted patent restrictions to allow for production of cheaper generic medicines for HIV, TB and malaria.

Kibira, however, says that European pharmaceuticals have sought to roll back this provision by advocating for free trade and economic partnership agreements (FTAs) with developing countries such as India, Thailand and Brazil.

These agreements limit the gains for health rights made through the Doha Declaration which relaxed TRIPS, for example, the one being negotiated between the EU and India which would require India to trade away its ability to manufacture generic drugs. 

“The contentious provisions in the FTA would allow foreign companies to sue India over issues like price reductions on medicines and empower customs officials to seize generic medicines preventing them from reaching their destination,” Kibira explains. 

Access to medicines graphic by WHO

This is particularly worrying because India provides about 80% of the ARVs used to treat more than six million people in Africa, according to Medecins Sans Frontiers (MSF), not to mention cheaper drugs for other ailments.

“As per requirements under TRIPS, India grants product patents for drugs and pharmaceuticals while Uganda does not and these expansive laws may limit accessibility and affordability of cheap lifesaving drugs as Uganda does not have the capacity to provide drugs for its entire population,” says Moses Mulumba, executive director of the Centre for Health, Human Rights and Development (CEHURD).

Also, the provisions threaten Uganda’s opportunity to continue participating in trade and product development partnerships with India such as the one between CIPLA (Indian generic drug manufacturer) and Quality Chemicals Industrial Limited (QCIL) which has to some extent eased the accessibility and affordability of cheap drugs by Ugandans.

“Our partnership with CIPLA has boosted technological transfer, we have had more than 200 staff trained and we have also invested in research to continue producing ARVs and anti-malarials,” explains George Baguma, QCIL’s director of marketing.

Way Forward

Recently, the World Trade Organization granted LDCs an extension period till 2021 in which to enforce TRIPS.

“As a region with overwhelming capacity constraints in local pharmaceutical production and 80% of the population depending on generic drugs, this offer to extend the transition time illuminates how much more effort civil society needs to put in asking for an indefinite extension of pharmaceutical product patents,” said Mulumba.

Baguma says there is need for government to provide for compulsory licensing, enabling Uganda’s pharmaceuticals to secure licences that allow them to copy patented products and processes without fear of prosecution.

WHO okays non-surgical circumcision devise to slow spread of HIV

The World Health Organization (WHO) last week prequalified a non-surgical circumcision device, PrePex that could delay the spread of the HIV/Aids pandemic.

PrePex is a disposable and easy-to-use device made of rubber bands. When applied to penis, the foreskin dies from a lack of oxygen and either falls off on its own or is easily cut off. This procedure is non-surgical, bloodless and requires no injected anaesthesia. 

 

WHO based its prequalification (a process to ensure that medicines, diagnostics and medical devices meet international standards of quality, safety and efficacy) of PrePex on a range of clinical data, including trials of the device in Rwanda, Uganda and Zimbabwe and evaluation of the manufacturing facilities and processes for the device. In a statement it (WHO) issued on Friday, it is estimated that if 80 percent of adult men in 14 priority African countries (with high HIV incidence and low rates of voluntary medical male circumcision) were to undergo the procedure by 2015, 20 percent of all new infections in men and women would be averted by 2025 in those countries.

Angelo Kaggwa, the program coordinator of the AIDS Vaccine Advocacy Coalition (AVAC) said that international donors have indicated a willingness to fund pilot studies and introduce PrePex for VMMC programs. However, African governments need to evaluate whether PrePex is a good additional option and develop policies and budgets to match.

 “This initial prequalification of PrePex is only for men 18 and older. One of the key next steps for PrePex must be to gather data on safety and effectiveness among younger men and adolescents,” he said adding that many men seeking surgical procedures are under 18 and there is need to provide them with a range of options.

Prepex was developed by Circ MedTech; an Israeli company founded in 2009 and was validated for the safety and efficacy by the Government of Rwanda and findings published in the Journal of Acquired Immune Deficiency Syndromes (JAIDS).

According to the WHO statement, the impact of PrePex and other non-surgical devices that could also be prequalified will depend on factors including the cost of the devices, quality and scope of data available to guide decisions about product introduction.

The cost of the device is reported to be $20 (Shs 52,000) which may be a barrier for widespread use. 

PrePex was first approved by the U.S. Food and Drug Administration in 2012 and certified by the European Union.

Landmark clinical trials in three Uganda, South Africa and Kenya in 2007 showed that voluntary medical male circumcision reduced HIV-negative men’s risk of HIV infection by at least 60 percent.

Dr Joshua Musinguzi, the acting Programme Manager of the AIDS Control Program said circumcision reduces the surface area for the virus to thrive.

“It is estimated that the removed foreskin reduces the surface area by about the size of the forehead and removes the Langerhans cells which act as receptors for the virus,” he said. The cells are found in the foreskin.

After circumcision, the area develops a scar and is therefore hard. This reduces the permeability capacity of virus.

Uganda’s position;

In its National HIV Prevention Strategy for 2011-15 and its HIV Prevention Action Plan, Uganda’s government has identified safe male circumcision as one of five priority evidence-based biomedical interventions and targets 4.2 million eligible men undergoing the procedure by 2015.

However, of the 1.2 million men that were targeted last year, only 380,000 were circumcised according to the ministry of health records and the 2011 Uganda Demographic Health Survey indicates that 24% of men in Uganda are circumcised.

To scale up efforts, the U.S. through the President’s Emergency Plan for AIDS Relief (PEPFAR) is offering support through funding, going from over $1.6 (Shs 4b) million in 2009 to over $31 million (Shs 80b) in 2012. It has supported more than 450,000 circumcisions in Uganda since April 2010.

 Currently, the Ministry of Health is spearheading a campaign dubbed, “Stand Proud, Get Circumcised” to educate the public and promote the uptake of safe male circumcision among men 15 years and older.