End in sight for trachoma

Kudo Kapel in her 70s, suffers from trachoma, the leading cause of preventable blindness in Uganda. Outside her manyata, a screening team member shines a torch in her eyes to check if she needs an operation. Her family members observe what is happening.
At first she hesitates to go to Panyangara Health Centre III in Kotido District, where on an ordinary day, the team of three surgeons (Ophthalmic Clinical Officers) carry out surgeries on 18 patients. Both of Kapel’s eyes need to be operated on. With a bit of nudging from the Village Health Team (VHT) members and health workers, Kapel gets into the waiting vehicle, social mobilisation at work. At the health centre, Kapel joins the queue where 10 other patients are waiting to be treated.

Soon Kapel is on the operating table, local anesthesia is administered around her left eye. The minor operation takes 30 minutes and she is led to the recovery room to get some antibiotics to help in the healing of the wound.
Efforts to eliminate trachoma started with a baseline survey in 2007 that scientifically portrayed the extent of the problem.

The survey revealed that in parts of Busoga like Kamuli, the TF (acute trachoma) was at 33.6 per cent and Karamoja had a prevalence of 60 per cent.
By 2014, a Trachoma action plan had been developed. This would guide the elimination of the disease by 2020. The plan is part of the Neglected Tropical Diseases Masterplan, Dr Patrick Turyaguma, the Programme Manager in Charge of the Trachoma Project at the Vector Control Division, Ministry of Health asserts.

Endemic
Endemic means the disease is present in the area. When it is above a certain threshold it becomes a public health challenge. For trachoma, that threshold is 5 per cent prevalence of the population. Prevalence surveys are conducted regularly to determine whether the disease is there and if it constitutes a public health problem.
If TF (Acute Trachoma found mainly in children 0-9 years) is more than 5 per cent, then that area is Trachoma endemic.
Personal hygiene and sanitation are risk factors according to Dr Turyaguma. The transmission of this form of bacterial infection could be by a fly or through hands.
The disease is also spread through hankies and bed sheets. The eyelids are affected by the bacteria. The conjunctiva (mucous membrane that covers the front of the eye and lines the inside of the eyelids) develops follicles. With time, these follicles cause scars.

Another term found in the literature is TT (the blinding stage). Here, as the disease spreads, the eyelashes turn inward and begin scratching the cornea. The scratching injures the cornea, and could lead to blindness. Intervention at this stage is surgery.
If it is more than 0.1 per cent in the population then that area is said to be endemic to Trachoma.
Elimination of trachoma will happen when the prevalence of the disease will longer be a public health problem, that is, TF levels at less than 5 per cent and TT levels to less than 0.1 per cent. When this happens, Uganda will be declared Trachoma free.

This is measured district by district. The World Health Organisation (WHO) looks at these figures at a national level. All those involved in the elimination efforts long for the day when Uganda’s Minister of Health will get that certificate from WHO’s Director General. That day does not seem too far away after more than 10 years of intervention to eliminate the disease.

Before that day comes, there is plenty of work to do under the country’s Surgery, Antibiotics, Face washing, Environmental improvement (SAFE) strategy. Different agencies are partnering with government to see the desired change (elimination by 2019) in more than 43 districts which are endemic to the disease. For instance SightSavers is taking the lead in the surgical side of the intervention.

Why you should care
Blindness is a terrible condition. The economic burden of looking after a blind person is high for the family. The country too feels the burden. In an ideal situation, institutions should take into account the needs of the blind.
The disease could spread to other districts. Surrounding districts to the endemic ones are surveyed to see if this threat exists. Trachoma is not spread easily because it requires repeated exposure for that to happen. If there was mass movement of people, it can lead to that kind of spread. By and large, it is a focal disease.

What is the progress so far?
There were 41 districts (these increased to 46 as new districts were created) in 2007 that had TF at more than 5 per cent. At that time, more than 100,000 people needed eyelid rotation surgery to correct their condition to prevent blindness.
Because of annual mass drug administration, prevalence data now shows 37 districts have discontinued the treatment. The remaining districts are six, mostly in the Karamoja region. There are about 6,500 remaining surgeries for Uganda to reach elimination.
Johnson Ngorok of SightSavers Uganda, speaks with deep concern about the disease. “I have relatives who have been made blind by the disease,” Ngorok says.

SightSavers employs creative means of working with LCs, health workers, and village health team members. They employ the search-and-carry-out the surgery method for all those who need an eye operation. That is how, over the years, the 100,000 people identified in 2007 have been reduced to about 6,500 now.
“We demonstrate to WHO that we have gone to every household,” says Ngorok.
In the mass drug administration of the antibiotics, the minute the prevalence rate is over 5 per cent, everyone in that district takes the medication.

Over the years, funding has been generous from the Queen Elizabeth Diamond Jubilee Trust, and USAID. Pfizer has donated the antibiotic Zithromax to treat the people in the affected areas. Water Mission, Concern Worldwide, World Vision and Water Aid do the face washing and environmental improvement components of the Strategy.
Partners such as RTI Envision provide the resources and logistical support.
Benjamin Binagwa, Chief of Party at RTI Envision funded by USAID says they work closely with the Ministry of Health to eliminate trachoma disease and other NTDs. “We do the antibiotic treatment part of the SAFE strategy,” says Binagwa.
The implementation is done by health workers, and the Voluntary Health Teams.

Treatment
Treatment using the antibiotic Zithromax started around 2010. Binagwa indicates that Uganda receives drugs from Pfizer through the International Trachoma Initiative and by 2016 the situation had changed radically. Trachoma was controlled in 37 districts from the initial 46, thanks to the annual treatment that had been administered over the years.
On the other hand, the border areas still pose a challenge to treatment. Kenya also treats trachoma on its side of the border but it does not happen at the same time as Uganda. Pastoralist communities move across borders in search of water and pasture.

Binagwa says, “We are having cross-border discussions so that when Uganda is treating, Kenya is also treating.”
The remaining districts in the country that are still receiving treatment are Kaabong, Amudat, Moroto, and Nakapiripirit. Tony Achuma the District Heath Education Officer of Kotido says, “The Cross border Surveillance Team between Uganda and Kenya meets twice a year, and issues of trachoma are discussed.”
Christopher Omoding, Project Coordinator of the Karamoja Trachoma Elimination Project mentions the fact that their intervention is in the facial cleaning and environmental improvement.

They also receive funding from Queen Elizabeth Diamond Jubilee Trust; their interventions began in 2017. He wishes these components could have began at the same time as the other interventions.
“Facial washing and environmental improvement are what will sustain the gains made in the fight against trachoma ” says Omoding.
World Vision’s approach to increasing facial washing and improved environment is through behavioural change messages to the communities and schools. Radio programmes and drama are some of the media they use to sensitise the community. There is a call to end open defecation, increase latrine coverage and adopt hand washing. Community-led efforts are beginning to yield results as members adopt the habits recommended.

Challenges
Some areas like the mountains of Moroto, Napak, Kadam, and Kaabong have been hard to reach. There are pockets of the region where surgeries have not taken place. Equipment and vehicles cannot access them.
Binagwa points outs, “it is not only the eye programme that is affected by the challenge of access, at RTI we work closely with districts to train VHTs in those hard to reach areas.”
The challenge of pastoralism exists as it leads to cross border movement of the population. New infections could arise in the community.

Also, the bottom line is face washing and environmental improvement to ensure the disease does not resurface once the project ends. The results could be reversed if there is no behaviour change.
Dr Turyaguma argues, “Health system strengthening will prevent the resurgence of the disease and strengthening collaboration with ministries of water and education.”

According to Binagwa, “Health is beyond the ministry of health. You have to work with others to achieve objectives such as getting rid of trachoma. Clean water is the mandate of the Ministry of Water and Environment for instance.”
In order to maintain the gains achieved so far, face washing and environmental improvement require water.
In Karamoja for instance, according to the Uganda National Household Survey 2017, access to improved water sources stands at 92 per cent but the distance to those water sources at least 3km. The girls in most communities of Uganda walk long distances just to get that water neccesary for facial washing and cleaning the homestead to ensure trachoma and other diseases are fought.

While development partners have helped by providing resources to cause the change in the trachoma picture in the country, Binagwa is still concerned.
He states, “Donors come, we do a good job like this one but when the project ends, things tend to go back to zero. The ideal would have been for government to allocate resources to these programmes we are supporting. We are yet to have those conversations with government. There are things that should to be in place for this elimination to stay where it is.”

Interventions to follow
Binagwa says “Partners at the national and district level have worked hard and the VHTs work with meagre resources to cause the huge change seen in the trachoma situation.”
WHO has ensured that the standards are properly maintained, dosage is observed, and advice on policy given. Impact assessments are done properly. Data retrieved can be shared globally. Guidance has been provided. Side effects of drugs are reported to WHO so that corrections are made.
The Ministry of Health Operational Framework was followed and also the policy on trachoma and other NTDs is up-to-date. What needs to be added to this good policy framework is to support it with adequate budgets. The structure of the NTDs exists but is not fully staffed.

“As NGOs we are taking on responsibilities that should be the role of the ministry of health team,” says Binagwa.
In the final analysis, Kudo Kapel’s image remains latched on one’s mind. She kicked the trachoma monster from her eye. Standing in front of her manyata, her left eye is gradually healing having had her correctional surgery from the effects of trachoma. It is hopeful job of eliminating it from Uganda will be done come March 2019.