Posted by Duncan Maru
People often ask us, why did we choose to work in Achham? The most proximal answer is the HIV epidemic. Achham has some of Nepal’s worst HIV rates and a health infrastructure woefully inadequate to meet the task. When Jason and Roshani first went out to Achham in February of 2006 to do a documentary on HIV, they met dozens of HIV-infected widows that were receiving essentially no medical care. In a district of 250,000 people, there was one doctor who also served as chief administrator. At the time, the nearest antiretroviral treatment center was twelve hours and a month’s wages away. After Jason talked with Sanjay and I and we began working on some initial plans and fundraising, our mentality was that we had to tackle HIV and tuberculosis. Schooled in part by groups like Partner’s in Health, we knew that these diseases had to be tackled not through vertical disease-focused programs but through a horizontally-integrated primary care approach. Still, HIV (and its twin tuberculosis) was the primary target in our minds. We had each done public health research on the topic, and besides a single disease seemed more feasible to take on in a place with such an overwhelming need.
In April of 2007, which marked the beginnings of Nyaya Health in Achham, we made a site visit that included several community discussions, visits to local health facilities, and a household survey. The results showed that the health problems of Achham were of massive proportions, but of the more entrenched, ages-old variety: water-borne diseases, malnutrition, maternal and infant mortality, respiratory diseases caused by poor indoor cooking ventilation. Yet these diseases weren’t attracting the kinds of funds that AIDS did. The primary health system was almost non-functioning, with health posts sporadically staffed and medicines lasting only a few months a year. There were HIV slogans written on walls throughout the area, several “clinics” providing only treatments for sexually transmitted disease and HIV testing, and a radio program dedicated to HIV messaging. These programs were handicapped by the basic lack of public health infrastructure in the area. HIV-focused vertical programs would not work here.
So, we changed course somewhat. Rather than an HIV program, we started developing plans for a primary healthcare clinic. The main focus would be on maternal and child health, which appeared to be the most neglected and critical health issues. The clinic would of course offer HIV testing and treatment to pregnant woman as part of comprehensive antenatal care. Sexually transmitted diseases would be treated like any other primary care issue. Counseling on risk behaviors would be done as part of good preventive primary care.
This history is particularly worth revisiting given that Nepal recently received $76 million from the Global Fund. These funds are of course welcome. At issue, however, is whether the government of Nepal and her partners will be able to use these funds in a way that is integrated with the entire health system. Using this money to improve primary care infrastructure and integrate HIV testing and treatment into that system is the primary challenge. On a small scale, this is exactly what Nyaya Health is trying to achieve.
Whenever I think about the AIDS industry and how my own thinking is shaped by it, I remember the story of one of our first days in Achham, when Jason, Roshani, and I were just trying to learn about how we might tackle the problems of health infrastructure there. It is a story that I will carry with me for the rest of my life, about how the perfect storm of poverty, female disempowerment, and HIV brought about the undignified, horrifying demise of one young woman. It is also one that I am ashamed to recall, since I without question made the last day of her life even more terrible.
When I heard the drums from somewhere on the hillside, I knew her body was making its solemn descent to the river. The teacher with whom I was doing a health survey had told me that that morning she had died at four o’clock that morning, and the precision and certainty with which he uttered the time of death struck me as odd. I couldn’t help but wonder whether that was another unforeseen observer effect. My thoughts turned back to the day before.
An unknowing passerby might think it were the flies that were eating her alive rather than the HIV. But there were no unknowing passerbys here; she was out in the open for all to see, and the local AIDS industry had made certain that everyone knew precisely that she was suffering from a special disease. A disease that her husband had contracted in India, and one that brought on sure death. Unlike malnutrition or diarrhea or pneumonia or postpartum hemorrhage, this was a disease that was on the billboards, on the sides of buildings, on the radio. In the name of “stigma reduction” and “prevention education”, I wondered if they had in fact made AIDS sufferers worse off. In the absence of any real medical intervention, they certainly hadn’t made their condition any better.
She was seated on the first floor of her clay house, about 8 feet above a pile of excrement and refuse. She was wasted, delirious, tachypneic, incontinent, eaten by flies, and, it seemed, on display for the whole village. She was being barely taken care of by her half-blind elderly father-in-law. It was hard to imagine a more undignified way to suffer and die. It epitomized the pestilence-as-punishment meme that has had so much traction throughout human society.
Roshani quite appropriately put away her camera. A large crowd had already gathered around her house. We all were thinking the same thing, what are we doing here, we can’t examine this woman like this. But the woman’s friend had insisted, and now she was expecting us.
Jason began the examination. More folk from surrounding houses had stopped by to watch. Jason gently began to ask her about her fevers, diarrhea, and difficulty breathing. Her speech was slurred and barely audible; even Roshani could not understand her. As such, the interview proceeded with a triple translation, from the woman’s encephalopathic/Achhami Nepali to her father-in-law’s Nepali to English.
The exam was quick as all we had was a flashlight. She was severely anemic, her pulse was rapid and weak, and her respirations were 30 breaths per minute. The intervention at this point was clear: get her some fluids and antibiotics and then to the hospital four hours away in the neighboring district where she could get a Chest X-Ray and sputum evaluation and receive relative inpatient care. We did know that the hospital had no transfusion capacity and a newly minted MBBS doctor who was sincere but completely over his head as the district health officer and single allopathic doctor in an area spanning over two hundred thousand individuals.
Roshani tried to convince the father-in-law that they bring her down so we could get her to a hospital. He was reluctant to let her go, saying that she did not have anyone to take her to the hospital and, after all, she had been to the hospital six months back and returned without any medicines (it was unclear, but seemed that her CD4 count was done and at that time was not low enough to start antiretrovirals). Eventually, however, he (along with some other men of the family), agreed to take her down to Sanfe and have her stabilized by a private medical practitioner there (a mid-level community medical assistant, or CMA).
Down at the village, a man from one of the AIDS NGOs ultimately agreed to facilitate her going to the hospital, and finding someone to accompany her. The private medical started to give her some fluids and antibiotics for stabilization prior to departing. A jeep was arranged, and it was on its way. We were feeling good about the situation; although we still were, in the people’s minds, main actors, we had somewhat diffused the responsibility to individuals who knew the community well while still obtaining the objective. As an NGO without a program as yet and a whole two weeks of experience in the community, we had undertaken an excellent non-intervention intervention. We went across the river to make some phone calls, to try to track down the missing doctor from the district hospital.
When we returned two hours later, the situation had completely reversed. She was now sitting outside, several houses down from the private medical practitioner’s office, surrounded by a large crowd. It was not completely clear the inciting event or actor was, but what was certain now was that she was not going to the hospital. The men of her husband’s family had decided that there was nobody to go with her to the hospital and that she didn’t have a chance anyways. They asked us why don’t we help her son instead, since her mother is basically dead. So, she returned back to her village and died that night.
The procession passed by us, and my thoughts turned towards things about which I would never know, in some vain attempt to re-humanize her in my mind after her dehumanizing death. I wondered how she had felt on her wedding day, or when her son was born? Did she cry when she left her family to live with her husband? Did she swim in the river to which her body was returning? These were idle, childish thoughts, as if I had known her. The teacher and I gazed at the procession for a moment, and then walked on to the next village.
