Health is not the only DISEASE

Nepal's flourishing '76 million dollar-a-year' AIDS industry aside, most young women were turning widows in a western mountain district with no clue as to how to fight this apocalypse. Until, a group of idealists arrived with the best in healthcare
Anil Bhattarai Toronto/Kathmandu

This new year, a remote mountain district in western Nepal is seeing the emergence of a health care system that is humane, socially just, professionally competent and accountable to the communities it serves. Pioneering this process is Nyaya Health (Health Justice), a non-profit organisation. It is an assemblage of ideas and people scattered around the globe, but connected through their commitment to social justice, community development, with an uncompromising stance for transparency.

On April 20, 2009, Nyaya Health (www.nyayahealth.org) entered into a formal agreement with Nepal's ministry of health and population to renovate and operate the Bayalpata Hospital in Achham district of the western mountain region. This hospital was built way back in 1983 as a district hospital, but remained largely abandoned for over 20 years as the district headquarter was moved to another place. 'Nyaya' renovated two of the six clinical buildings, one mess hall and two staff quarters before it began comprehensive health care in June this year. Instead of calling in contractors, the renovation process involved local masons and material, with procurement of outside material with stringent control. Every penny that came in and went out was recorded and available for public viewing on its 'wiki' on the net. 

Two months after signing the agreement, Nyaya's health care operations formally shifted from a small outpatient clinic and emergency service in Sanfe Bagar, where they had started their work in April 2008, to Bayalpata on June 21 this year. According to this contract, in addition to allowing Nyaya to use the infrastructure, the ministry will provide a cash contribution of Rs 14 million (Nepali) spread over several installments between 2009 and 2013.

The shortfalls are to be generated through individual donations, institutional grants and the payment some of its volunteers receive for providing editorial services for medical journals under an equity-edit arrangement. Nyaya plans to renovate all the remaining four clinical buildings to house expanded voluntary counselling and treatment programme on HIV, directly observed treatment programmes for tuberculosis, digital x-ray machines and surgical operations.

This was a big leap in health care delivery in the region. Only two years ago, 250,000 people in this district had only one doctor. They had to rely on scattered and largely dysfunctional networks of government health posts in which absence of essential medicines and trained personnel was routine. Private practitioners, many with dubious training and qualification, routinely prescribed unnecessary, and at times, harmful medicines.

Impoverishment, resulting from illnesses and resultant medical expenses, was common, as many sold their assets to pay for the health services. Large-scale migration of young males into Indian cities for seasonal and routine labour fuelled the explosive situation of increasing HIV infection among women, many of them prematurely widowed as young males died, inflicted with AIDS. Nepal's '76 million dollar-a-year' AIDS industry aside, the nearest anti-retroviral treatment center, in addition to being erratically run and inadequately supplied, also means 12 hours of
a difficult bus ride and one month's wages for most of Achhamis.

Following the signing of that agreement with the Nepali government, Duncan Smith-Rohrberg Maru, one of Nyaya Health founders, wrote to the Nyaya team scattered around the world: "Also, I wanted to remind folks about the origin of Nyaya. Many of you have read this before, but it is worth reminding/revisiting as we take the next big steps. Below, I've pasted Jason's first email to me and Sanj (Sanjaya Basu) that basically started Nyaya as we now know it."

In February 2006, Jason Andrews, then a recent graduate from Yale University's Medical School, and Kathmandu's Roshani Dhungana, made a trip to two mountain districts, Achham and Doti, of western Nepal. Their purpose was to document the HIV epidemics in those districts. What they saw was unsettling.

Roshani made a documentary about what they had encountered. In March, Jason wrote an emotionally charged letter to some of his close colleagues, including Sanjaya Basu and Duncan Smith-Rohrberg Maru.

The limited surveys on migrant returnees showed 5-10 per cent HIV prevalence rate. Among the women who came to two of the voluntary counselling and testing sites, 40-50 per cent of women tested positive, wrote Jason. "I don't know how they were motivated to go for the testing, so can't tell the extent of the selection bias. While I was staying there, I literally had 10 women knocking on my door every night asking for medical help for themselves or their children. All but one of their husbands had worked in India and half of them were widows at the age of 25-40. Among those that knew their status, all were positive."

At least one male member of about 80-90 per cent of the households in these districts migrate to Indian cities such as Mumbai, Delhi and Ahmedabad for work. Many have made their home there. Some have homes on both sides. In Mumbai, they have even made their own Achhame Tola. Most, however, return home after the season's labour time is over or when it is time to attend to the fields. Or, as monsoon approaches, and when it is festival time such as Dasain and Tihar (Dushahara and Diwali in India).

Nepal's burgeoning 'AIDS industry' has done enough to let people know the intricate details about how HIV gets transmitted and what the precautionary measures are. But when it comes to providing treatment, it has little to show. "It was difficult to talk with these women because there was nothing I could offer or recommend to them," wrote Jason in that email. "The nearest facility providing HIV care (and doing so incredibly poorly) is a 12 hour bus-ride away. The women were talking about selling their houses to buy ARVs for themselves and their children, which we dissuaded them from doing, since that would buy them at most a year of meds (medicines) and survival. Moving to the cities where care is available is not an option for them, due to the cost of living and having no employable skills."

A moment of epiphany, perhaps. What do you do when you know, you are acutely aware, but you just can't act?

It was this email that inspired Duncan, Sanjaya and others to raise funds to carry out HIV treatment activities in this remote and forgotten region of Nepal. When they carried out a preliminary survey in 2007, they realised that health problems run far deeper than HIV infection alone. Sixty per cent of children were malnourished. Infant mortality rates were abysmally high. Water borne and respiratory illnesses were widespread. Maternal mortality was one of the highest in Asia. Instead of focusing on HIV, it was obvious that meaningful interventions were needed to broaden health care. This realisation led to the establishment of an outpatient primary care health clinic in Sanfe in April 2008.

Three broad principles motivate Nyaya's operations: transparency and accountability to local communities, openness in sharing ideas, and uncompromising commitment to social justice. The utilisation of information technology has been key to increasing efficiency and openness. Nyaya's wiki provides details about the data it has been able to collect on health situations, budgetary operations and the research being conducted. It utilises the software to constantly monitor the utilisation patterns of drugs. Because the information is shared openly, its volunteers scattered in Nepal or outside point out any discrepancy or inaccuracy, in no time.  

The broader conditions of health remain daunting. In June 2009, one of Nyaya Health's volunteers, Ranju Sharma, filed a report with two contrasting pictures - of the same agricultural fields taken one year apart during the same time of the year. In the 2008 picture, the field looked lush green with budding rice plants. This year, it was in brownish tint.

The monsoon failed to arrive in time. Much of South Asia, including many parts of Nepal and India, had plunged into drought. In Achham, the winter crop in the previous year had been devastated and with failing monsoon, the food security situation unimaginably dire. The last monsoon saw widespread deaths in much of the western mountain regions due to diarrhoea and cholera epidemics.

Indeed, Nepal's health care system needs total overhaul. Public policies remain focused on cosmetic approaches. Health care resources are concentrated in city centers and because of high degree of commercialisation, access and quality for the majority is almost impossible.

Nyaya emphasises redistribution of resources and rebuilding of health care with social justice as a key organising principle. On April 21, 2009, Duncan wrote in an email to the Nyaya team: "Let's never forget where our roots and inspirations come from, essentially, a morally outrageous situation that compels us to action."

In the face of widespread deprivation, health service can address some of the symptoms of economic and social scarcity and suffering, but in the long run, we need to address the root causes such as hunger and clean water, says Ruma Rajbhandari, a US-trained Nepali medical doctor, who helped set up professional medical education for Nyaya health workers in Achham. By providing essential health care, Nyaya is addressing one of the root causes of deprivation: privatised medical expenses.

In the coming years, it plans to expand from health to food security and access to clean water. In a time when health is increasingly looked through the lens of medicine, when any basic medical services are becoming increasingly out of reach for those who do not have money, and when the broader conditions of lives are overlooked, Nyaya is perhaps helping revive in Nepal a broad conception of health that sees it not as the absence of disease, but the presence of physical, emotional and social well-being for all.
Clearly, 2010, marks a clinical rupture in optimism and praxis, and a great leap forward.

The writer is a PhD scholar at the University of Toronto, Canada, and a columnist with The Kathmandu Post, Kathmandu