When the World Health Organization last month announced that Nepal has become the first country in the South-East Asia region to eliminate trachoma ‘as a public health problem’, many Nepalis, especially those living in central and eastern hills and urban areas, were taken by surprise—apparently because they had never heard about the ailment before.
On the other hand, for millions of people living in western hills (from Surkhet to Baitadi) and the southern plains (from Sarlahi to Kanchanpur), the announcement came as a big relief—for thousands of people there had already lost their eyesight to this communicable disease in past decades. People from this region have many stories of transition from blindness to sight–thanks to a successful anti-trachoma programme that started in 2002, which has achieved its mission after 16 years.
Unknown to many, the campaign to eliminate the disease from Nepal has an interesting story.
Meet Phulmati Chaudhary, a resident of Partitole in Tilakpur of Nawalparasi. This 48-year-old woman says she experienced uneasiness in one of her eyes at the age of 16. She used to feel as if dust had entered her eye and it would feel itchy. Her eyes would be covered with discharge containing pus every morning when she woke up. Gradually, she had problems in seeing light, which prevented her from performing household chores and farm activities.
“People noticed that I had problems in my eye; therefore they used to call me ‘kani’ [a derogatory term referring to the partially blind]. It was a real pain for me and I did not participate in social functions,” she remembers, “When I was 33, one of my close neighbours informed me about a camp nearby my home and suggested that I go there for treatment.” Doctors at the eye camp performed a trachomatous trichiasis (TT) surgery on her and it helped her get back to normal life and perform all activities.
It was the camp set up by National Trachoma Programme (NTP) of Nepal Netra Jyoti Sangh (NNJS), a national NGO working with a mission to help people retain and get back eyesight.
According to Shekhar Sharma, Administration and Finance Manager of the organisation, his organisation successfully rescued thousands of people from the risk of blindness through its preventive and surgical programmes in past 16 years.
A survey carried out in 1981 found that the disease was endemic in 20 districts of the country (Nepal was divided into 75 districts then). According to the WHO definition, the ‘endemic’ status meant that at least 10 per cent of children from the age of one to nine years had trachoma follicular (TF). “At the stage of TF, children experience various symptoms for around 15 days and they will disappear,” Sharma informs, “But, it is a cycle and the symptoms will reappear almost every year. Ultimately, it leaves trachomatous scars (TS) around eyes.”
The TS later develops into a complicated condition that eyelashes go towards the pupils and it causes corneal opacity, which later develops into blindness, Sharma explains, adding trachoma was the second cause of blindness in Nepal (the first being cataract).
Owing to the gravity of the issue, the WHO in late 1990s and early 2000s repeatedly called on global health activists and stakeholders, including governments, to eliminate avoidable blindness from the world by 2020.
“Responding to the WHO’s call, we launched the NTP in 2002 with a target of meeting the WHO goal as early as possible,” Sharma, one of the initiators of the programme, informs.
And, now, two years before 2020, WHO says that trachoma is no more a public health problem for Nepal.
Rounds of preliminary surveys, mass drug administration campaigns, impact surveys and surveillance surveys culminated into making Nepal the first country to achieve the status in the region that, according to WHO grouping, includes Bhutan, Bangladesh, South Korea, India, Indonesia, the Maldives, Myanmar, Sri Lanka, Thailand and East Timor.
However, the announcement of elimination of trachoma as a public health problem does not mean that trachoma does not have any existence in Nepal. Neither does it mean that it can never evolve as a public health problem again.
“The elimination only means that the disease is present in less than five per cent children of 1-9 year age group and in less than one person among 1,000 adults,” according to Sharma. This information suggests that prevalence of the disease in children and adults has to be measured separately as WHO has devised different scales for the two categories.
“This disease is unique because it generally originates in children and gets transmitted to their mothers and other family members. Therefore, our primary target group for both preventive and surgery programmes is children,” he informs.
The pattern of trachoma’s pervasiveness is also quite unique in the case of Nepal. Whereas it was never present in some districts like Kathmandu, settlements of Tharu community were always at its risk. Because the disease was nominally present in Nepali speaking communities, trachoma does not even have an official Nepali name. “Locals in plains and few hilly areas have given their own names to the diseases,” Sharma says, “They call it Khasre, Rohe, Kuthru or Chorbar. However, the officially recognised name is trachoma only.”
As the disease is communicative, any area can be at risk at anytime. “We cannot rule out the disease crossing the level of five per cent in children or one person per 1,000. Therefore, we have to continue our campaign.”
Anti-trachoma campaigning, worldwide, has four components: surgery, antibiotics, face washing and environmental improvement, beautifully abbreviated as SAFE. After the elimination as a public health problem, the campaigners will now focus more on ‘F’ and ‘E’, whereas ‘S’ and ‘A’ will be adopted whenever necessary, according to Sharma.
Unlike other successes achieved by Nepal in the public health sector (such as the significant decline in maternal and infant mortality rates), the recent achievement is a result of an NGO-led movement, though concerned government agencies also provided support for effective implementation of the programme.
“As soon as WHO decided to end the prevalence of avoidable blindness from the world by 2020, the Nepal government also endorsed the decision,” Sharma informs, “Then, the responsibility to implement the decision was with us too as dutiful citizens of the country.”
Nepal Netra Jyoti Sangh was already a resourceful organisation then; that is why it dared to launch the ambitious National Trachoma Programme in 2002.
At the time when the government has tightened rules and regulations for national and international NGOs, Sharma complains that keeping all non-government initiatives into the same basket with the ‘NGO’ tag is also wrong. He demands that organisations like Netra Jyoti Sangh get different treatment from the government and members of the public. “In Nepal, if three of you register an organisation it is called NGO. We have 2,000 staff, 10,000 volunteers. We have operated 18 hospitals across the country. But still, we are also NGOs.”
However, the organisation is happy that its efforts have yielded a sweet fruit now. Perhaps its commitment to continuing the prorgramme is indicative of the satisfaction it has felt after seeing the long-awaited dream come true.