Envisioning a New Nepal with Priority for Children

By Kul C. Gautam, First BP Koirala Eye Foundation Memorial Lecture, Kathmandu, 2 April 2010

It was a pleasant surprise and a great honour for me to be invited to deliver this first memorial lecture named after BP Koirala. As I look around this conference hall, there are many distinguished people here who are far more knowledgeable than I about BP Koirala and his legacy, and the subject of disability and health care in Nepal. I therefore venture to address you with tremendous humility.

I met BP Koirala only once, in July 1972, in Saranath, India. I was then a graduate student in America and was traveling back to Kathmandu for a summer internship via Benaras. Those were the bad old days of the Panchayat regime, and BP Koirala was in self-imposed exile in India. With the help of Shailaja Acharya, I had made an appointment to meet BP, who at that time was staying in Saranath.

The one hour I spent with BP allowed me to get the measure of this visionary leader about whom I had heard so much, and had read some of his enchanting literary writings. I was impressed how up to date he was with political developments in America and the world, and the very hot and controversial topic of the Vietnam War, about which we happened to share identical views.

BP, of course, had very strong views on democracy and human rights in Nepal. But what impressed me most was that for him democracy and human rights were not just matters of civil and political rights but they encompassed economic and social rights as well.

Many elements of what Nepal’s Marxist-Leninist-Maoist ideologues advertise as their progressive, agragami agenda today, were already part of BP Koirala’s agenda of democratic socialism. Land reform, abolition of the caste-system, empowerment of women, inclusion of historically marginalized communities into the political and economic mainstream, were key planks of BP’s democratic socialism.

I have a general idea of what BP’s overall vision was for a prosperous, democratic and egalitarian Nepal, but I have no idea what, if any, vision he had for the kind of specialized work that the BP Eye Foundation carries out to give vision – eye-sight – to the blind and visually impaired citizens of Nepal.

But I am pretty sure that BP would have felt very proud of what the Foundation is doing in terms of research, advocacy and programme implementation to promote access to eye care especially among women and children, and to reduce inequity in health and education services for our country’s under-privileged communities.

I am sure he would have felt very happy to see the Foundation’s efforts to present prevention of blindness, and childhood disabilities more broadly, as key components of Nepal’s attempt to combat poverty and achieve the Millennium Development Goals.

In its excellent reports and strategic plans, the BP Eye Foundation presents a comprehensive picture of the magnitude of problems, the progress being made and the challenges that lie ahead in providing eye care for all, as part of health for all, in Nepal.

If we zoom into the status of blindness in Nepal, it is estimated that currently there are over 200,000 blind persons in our country. This is twice the number of blind people compared to 25 years ago. And at the present rate of service delivery and the expected demographic trends, there will be over 400,000 blind persons by the year 2025.

But blindness is only the tip of the iceberg. Over 600,000 people have some milder form of visual impairment, requiring specialized eye care service. It is reported that 1000 Nepalis sustain eye injuries every day. Of them 250 eventually become blind. This is one of the highest reported incidences of eye injuries in the world.

Blindness is disproportionately high among women and people of poor and marginalized communities living in rural areas. Indeed studies show that blindness in women is twice as common as among men.

A study of individuals accessing eye care services in hospitals of Nepal showed that less than 14 percent of the total service users are children, although children comprise 40 percent of Nepal’s population. The proportion of girl’s accessing eye care services is even lower. Girls in Terai are reported to suffer even greater exclusion than their peers in the hills.

While recently there has been much progress in eye care services, it has been very uneven across the country. Kathmandu now has one eye doctor for 25,000 people whereas far and mid-west regions have one eye doctor for 2-3 million people, and 10 million people living west of Pokhara have no access to low vision services of any kind.

Thus it can be seen that blindness and visual impairment in Nepal are not just a health issue, but issues of gender equality, regional disparity and relative priority accorded to children, and especially the girl child.

Providing educational opportunities for blind and visually impaired children is a major challenge in all developing countries, and Nepal is no exception. There are less than 100 schools in the whole country that are believed to offer some form of integrated/inclusive programme which accommodate about 5000 BVI children. This is a small fraction of the 30,000 children who are blind and 90,000 who are visually impaired. With 350,000 deaf and 100,000 blind children who are out of school, and deprived of their right to basic education, Nepal is unlikely to meet the MDG 2 of universal access to quality basic education.

If we look around this auditorium, we will see that a quarter to one-third of adults here are wearing eye-glasses, and are therefore visually impaired. Obviously, we are the lucky ones as we have had a chance to get our eyes tested and can afford to buy eye-glasses. The plight of our country men and women who live in remote rural areas and cannot afford to see an eye specialist can therefore be easily guessed.

Going beyond blindness to other forms of disabilities, the situation seems even more critical. Indeed, according to one estimate, we have higher incidence of disability related to mobility (being crippled and lame, and unable to move arms and legs) – 34%; speech (being dumb) – 19%; hearing (being deaf) – 19%, epilepsy – 11%, and learning disability, mental retardation, and psycho-somatic problems – 12%+; than the loss of sight (blindness and vision impairment) which accounts for less than 6% of total disabilities.

The World Health organization (WHO) estimates that globally 10 % of people in developing countries are disabled. Given Nepal’s poverty, difficulty in accessing health services, poor ante-natal care and high incidence of traffic accidents, and more recently, the consequences of a decade-long violent conflict, Nepal probably has a higher incidence of disability than the global average.

It is estimated that in Nepal, diseases of various kinds are the main cause (over one-third) of all types of disabilities. Accidents and injuries account for 15 % of disabilities – and are now growing rapidly. The rest are due to birth defects, other congenital factors, and malnutrition. Among persons with disabilities about 70 percent are known to have sought help from some type of healers (but only 41 percent from medical practitioners).

Among various forms of disabilities, I would like to draw particular attention to what are called “non-visible disabilities”, particularly learning disability and mental health problems due to which many of our citizens suffer in silence, and live a life well below their human potential.

While our traditional child survival efforts have met with much success, accidents and injuries have become increasingly prominent. Falls, poisoning burns, drowning, animal bites, injuries from sharp objects and machinery, and corporal punishment are common causes of non-fatal injury in children. And we still have the indignity of widespread violence against women and girls, including dowry related violence.

As we all know from daily news reports, traffic accidents have grown to alarming proportions. To add to this, a legacy of 10 years of fratricidal conflict in this country has led to increasing incidence of violence to resolve not just political disputes but all kinds of local and community-based conflicts – all of these leading to more deaths and disability.

From this depressing catalogue of problems, let me move on to some solutions and successes.

We have a tendency in Nepal to exaggerate our failings and not to acknowledge our successes. In particular, it is fashionable for many Nepalis, particularly our “revolutionary” politicians to make sweeping statements about how nothing good ever happened under previous regimes, and how Nepal has not made any progress at all.

But objectively speaking, we have made some significant progress, and Nepal is actually on track to achieve quite a few of the Millennium Development Goals – such as reduction of child mortality, maternal mortality, access to drinking water supply, and basic education.

Some of the greatest success stories in terms of prevention of disability in Nepal have been virtual elimination of iodine deficiency disorders (IDD) and Vitamin A deficiency, virtual eradication of polio, and significant reduction in iron deficiency anemia affecting large numbers of women and children.

As a result of massive distribution of iodized salt, we have seen within a single generation the disappearance of goiter and cretinism and protection of thousands of children from brain damage and learning disability.

Nepal has one of the best programmes of Vitamin A distribution in the world, reaching 95 percent coverage all over the country. This programme has led to a significant reduction in night blindness and infant mortality.

Thanks to the very successful polio eradication programme, we no longer have hundreds of children being crippled every year. Leprosy, another debilitating disease, has been virtually eliminated. Iron deficiency anemia which leads to large number of women and children being anemic, lethargic and unproductive has been drastically reduced.

Overall progress in childhood immunization, including the deadly disease measles, has helped protect the health and promote the well-being of millions of children.

Although we lament the poor functioning of many of our public hospitals and health centres, we must celebrate the exemplary role played by Nepal’s 50,000 female community health volunteers. It is largely because of them that our Vitamin A, de-worming and other public health services have had a massive outreach, even in the middle of conflict, contributing so significantly to good progress towards achieving MDG 4 and 5.

We do not have the time today to describe and discuss the many highly effective and innovative programmes run by Nepali NGOs, some in partnership with the Government and others through efforts of the private sector alone, which are making a significant contribution in tackling various kinds of disabilities. Let me here mention just 3 or 4 pioneering examples to illustrate some remarkable achievements.

As our main focus today is on eye diseases and blindness, let me start by acknowledging the commendable work of Tilganga Institute of Ophthalmology that has now become well-known all over the world. Under the leadership of Magsaysay Award-winning Dr. Sandruk Ruit, Tilganga provides world-class eye care service, including high quality but low-cost intra-ocular lenses manufactured in Nepal itself.

In partnership with the Fred Hollows Foundation of Australia and UK, and a number of other non-government organizations, Tilganga has pioneered initiatives aimed at increasing the accessibility of eye care services to poor and remote communities in Nepal. Since 1994, Tilganga has screened nearly 1.5 million people and performed surgical operations to help restore the eye sights of some 75,000 patients.

Besides providing a comprehensive treatment service for cataract blindness through its outpatient’s clinic, Tilganga’s surgical centre treats other eye conditions such as glaucoma, trachoma and childhood blindness.

In addition to on-site facilities, Tilganga conducts outreach clinics and has established permanent Community Eye Centres (CECs) in remote areas of Nepal. Its outreach microsurgical clinics take eye care to some of the most remote areas of Nepal, reaching people who would normally not be able to get to Kathmandu or other cities with specialized eye care hospitals.

The philosophy and vision of Tilganga is to provide eye care services to the poorest of the poor, no matter where they live.

Beyond Nepal, the Tilganga Institute in collaboration with the Fred Hollows Foundation provides outreach services and training for surgical teams from Bangladesh, Bhutan, Cambodia, Pakistan, Sikkim, Tibet, Myanmar, northern India, North Korea, Ethiopia and elsewhere.

Another pioneering example involves the work of Nepal Netra Jyoti Sangh, one of the oldest NGOs with an extensive eye care network that offers eye care education, diagnosis and treatment, research and training, and is leading a very successful national programme for the elimination of blinding trachoma.

Focusing especially in the far western region of Nepal with the heaviest prevalence of the trachoma disease, Netra Jyoti has helped screen over 1.5 million vulnerable people, provided millions of doses of antibiotics, performed nearly 40,000 sight saving surgeries, and collaborated with many national and international partners, to provide water and sanitation services so essential for preventing this chronic and contagious disease.

An inspiring example, this time dealing not with the blind but with deaf people, is the training and employment of many deaf youth as waiters and waitresses by Kathmandu’s Nanglo restaurant and Bakery cafe chain. Starting in 1997, a pioneering and socially conscious entrepreneur Shyam Kakshapati made a daring decision to employ some profoundly deaf staff on an equal basis with all his other employees. This experiment, now involving over 50 deaf staff has proven to be a great success. Many of the original staff are still in post 10 years on. Interviews with deaf staff and their families show how enormously their employment has enhanced their status and quality of life.

This initiative has done much to change attitudes towards deaf people in Kathmandu. The Bakery cafes are popular eating places in the city and are often filled with businessmen and families, who can now communicate with ease with deaf waiters and waitresses. Interestingly, the Bakery Café initiative was a purely private sector-led effort in which the owner recruited staff from local NGOs and rehabilitation projects, without seeking any project funding from the government or donors.

Inspired by such examples, service organizations like the Red Cross, Rotary International and Lions Clubs, and many others, now provide considerable help in the prevention, treatment and rehabilitation of people with disabilities, especially children.

Turning now to the BP Eye Foundation (BPEF), its major early contribution has been in the development of human resources for eye health. With financial support from Lions International and the Government of Nepal, and in partnership with the Tribhuwan University’s Institute of Medicine, BPEF established the BP Koirala Lions Center for Ophthalmic Studies as its first flagship project.

This Center has been instrumental in expanding highly trained human resources for eye care in the country to the point that Nepal is now on the road to achieving self-reliance in terms of eye care professionals. This expanded human resource base has helped in the rapid growth of eye care services, increasing the number of eye hospitals from 5 to 20, and primary eye care centres from 20 to 60 between 1990 and 2009.

While there has been such commendable growth in specialized institutions and trained manpower – with over 400 skilled eye health workers trained in the last five years – studies by BPEF and others have revealed that Nepal faces serious issues concerning exclusion of women, children and ethnic minorities from equitable access to quality eye care services. In response, BPEF has launched 3 major new initiatives:

– A National Children’s Sight Conservation Programme – involving nationwide grass-roots health education effort, dedicated children’s eye camps in far flung areas, backed up by training and capacity building of peripheral health workers and school teachers, supported by an apex body – the National Children’s Eye Hospital and Rehabilitation Center in Bhaktapur as the Foundation’s second flagship project.

– A Nepal Gender and Eye Health Group – a multi-disciplinary institution that seeks to promote the concept of gender-friendly eye hospitals, and proactively reach out to extremely marginalized communities with the lowest human development index in the country.

– And branching beyond eye care, in the future BPEF will move from single disability focus to comprehensive sensory disability and development orientation. Accordingly, it is launching an educational programme of Assistance to Blind and Visually Impaired Children. This project would help establish a more accurate national database of BVI children, collaborate with the Ministry of Education and other educational institutions to refer vision impaired children to schools and make such schools BVI-friendly.

For these purposes, BPEF has an ambitious advocacy agenda ranging from securing tax exemption for low vision devices, further expanding coverage of the national vitamin A programme, introducing the rubella immunization, requiring eye and ear examination at the time of school admission, and influencing the national census in 2011 to collect better statistics on people with disabilities.

Perhaps BPEF’s most important advocacy effort will be to switch public policy from a needs-based to a rights-based approach. Besides the Convention on the Rights of the Child which Nepal ratified 20 years ago, Nepal recently became a state party to the Convention on the Rights of Persons with Disabilities. Under this Convention, Nepal is duty-bound to guarantee that persons with disabilities enjoy their inherent right to life on an equal basis with others.

Children with disabilities have equal right to education, health care, and other basic services in a non-discriminatory manner. All of us must join in BPEF’s advocacy efforts to help ensure that Nepal makes sincere effort to fully comply with this UN Convention.

In the words of Professor Madan Upadhyay, Chairman of BPEF, “Sight is a blessing, but blindness is not a curse”. Through its National Sight Conservation Programme for Children, BPEF will strive “… so that no Nepali child will become needlessly blind or remain so if medical intervention can help. Even if medical intervention cannot help, we would like to strive that no Nepali child would remain deprived of opportunities for education” …and that blindness need not be the end of the road for our future generations.

I heard from Dr. Sashank Koirala his childhood recollection of how BP emphasized the importance of preventive health care. He was very mindful that over 60 % of diseases in Nepal and other developing countries were water-borne. He spoke about the need to make essential health care available and affordable to all. In other words, BP was a champion of the primary health care approach even before the world community endorsed this approach at the Alma Ata Conference on PHC.

Let us recall that we cannot have good, sustainable eye care, if we as a society do not show much compassion to people with disabilities. We cannot have effective programmes for prevention, treatment and care of disabilities, if we do not have a strong health care and education system. And we cannot promote good health care if people are malnourished, illiterate and poor.

So to have real, sustainable, nation-wide impact, we need progress on a broad front of development and poverty reduction as reflected in the Millennium Development Goals. But to pursue such a broad-based development agenda we must have a conducive political framework in the country. This brings us back to BP Koirala’s vision for a progressive, socio-economic and democratic development of this country which he articulated half a century ago, and from which we have deviated and fumbled so many times.

Besides BP Koirala, this would also be a fitting occasion for us to remember GP – Girija Prasad Koirala – for he too was guided by the same principles that BP believed in. I recall meeting Girijababu a number of times when I visited him as a senior UNICEF official from New York and requested him and his government to accord higher priority to various programmes for children. I was pleasantly surprised that he did not need much persuasion. He often gave me examples of how and why investing in children was indeed the best investment in our national development.

Girijababu left us two weeks ago with an unfinished agenda of completing the peace process and finalizing a new progressive democratic constitution. Like BP, GP too devoted his whole life, until his last breath, to secure genuine democracy that would lead to economic development and social progress for all our people.

The best way we can pay our sincere homage to these great national heroes, would be to set aside our petty short-term differences and conclude the peace process and writing of the new constitution so that we can expedite the process of rapid economic development and social transformation that our people so desperately need and fully deserve.

As in all functioning democracies, we will continue to have our political differences and ideological debates. We will probably continue to experiment with failed ideologies and imperfect models of democracy. In our quest for building a New Nepal, we will undoubtedly go through many trials and errors. But there is incontrovertible evidence from countries around the world, following different ideological paths, that investing in basic health and education of children always produces sustainable development results.

So let us all invest generously in human development, starting with children, and giving priority to the most vulnerable and marginalized among them – as the BP Eye Foundation is trying to do – so that we can build a brighter future for all our children.

Thank you.