Patients “Achieving” Healthcare in LMICs: Reflections on “Second Chances: Surviving AIDS in Uganda”

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Anita Chary

Anita Chary

Anita Chary, MD PhD, is an anthropologist and resident physician at the Harvard Affiliated Emergency Medicine Residency. She is Research Director of the non-governmental organization Maya Health Alliance | Wuqu' Kawoq, which provides health care and development services in rural indigenous communities of Guatemala.
Second Chances, by Susan Reynolds Whyte, was published by Duke University Press in 2014.

Second Chances, by Susan Reynolds Whyte, was published by Duke University Press in 2014.

I recently read the book Second Chances: Surviving AIDS in Uganda, edited by Susan Reynolds Whyte, a medical anthropologist who has been conducting research and writing about health and illness in East Africa for many years. Second Chances is a collection of ethnographic essays about the first generation of people to experience HIV/AIDS in Uganda. These are people who thought they were going to die of AIDS in the 1990s and early 2000s, when antiretroviral therapy (ART) was not widely available; they were literally given a second chance at life when ART programs began in Uganda in 2004, following novel international approaches to drug patents and an outpouring of funding from PEPFAR and the Global Fund.

Second Chances is recommended reading for anyone interested in the experiences of people with HIV/AIDS in sub-Saharan Africa. The essays, written by Ugandan and Danish researchers, offer intimate portraits of the lives of people with AIDS as well as lessons familiar to those working in global health and development. Health seekers face a number of barriers—e.g. transportation, logistics, bureaucracy—to medication access; they struggle with dilemmas of disclosing HIV positive status to others; their relationships to friends, family, and co-workers are shaped and changed by illness, sometimes for the better and sometimes for the worse.

This is also a good book for anyone who is thinking about health systems. One of Whyte’s points that I found particularly important is that people do not simply access treatment, but achieve it.

Why the distinction between “accessing” and “achieving”? Even as ART has become increasingly available in Uganda, obtaining treatment is not always a straightforward process. That is, it doesn’t involve merely visiting the nearest HIV clinic as one might hope.

Whyte describes Uganda’s landscape of HIV/AIDS care as thoroughly “projectified.” There are hundreds of HIV/AIDS programs all over the country: care is available through a smattering of secular and religious organizations, government clinics, military hospitals, and emerging research facilities.

It can be quite difficult to navigate this maze of diverse public, private, and non-governmental entities. While services might be publicized in media campaigns or advertisements, one often hears about them through word of mouth from “advisory networks” of friends and relatives or during chance encounters with strangers.

Each institution has its own set of requirements for patients, who must live in a particular area, work for a particular employer, present particular paperwork, or not have other institutional options, for example. Reasons for including some and excluding others from care are not always clear to health seekers, especially as one can sometimes gain access to programs through what Ugandans refer to as “technical know-who”—knowing someone who can get your foot in the door.

On top of this, the benefits of being associated with the programs vary somewhat unpredictably. An impoverished person seeking treatment might discover that a program in one town offers her nothing but medications, but a program in another town offers her food rations or seeds for agricultural production on top of ART.

As well, it is not enough to simply enroll in a program. Patients become “clients” as they learn to be loyal to a particular institution and comply with its requirements to guarantee continued access to care.

In these ways, obtaining treatment for AIDS entails actively searching for programs that are accepting patients, having the right social connections and qualifications to enroll in them, and fulfilling program expectations to retain “client” status. The essays in this volume highlight how treatment seeking can require strategy, savvy, and persistence; obtaining treatment truly becomes an accomplishment.

Of course, these issues are not unique to Uganda, but pertain to any aid-saturated context. Reading Second Chances, I was reminded time and time again of patients I met in Guatemala, where I have been working on community health initiatives for the past ten years.

In Guatemala, the government public health system is grossly under-resourced and unable to provide adequate population health care coverage. In many regions of Guatemala, non-governmental organizations (NGOs) fill in some of the gaps in health care. Guatemala’s NGO per capita ratio of approximately 1 to 1,000 approaches that of Haiti, which has been deemed a “republic of NGOs.”

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As in Uganda or Haiti, certain regions of Guatemala are “projectified.” The streets of Antigua and Lake Atitlán, two of the most famous tourist destinations in Guatemala, are dotted with the banners and offices of numerous health services organizations. And as with HIV/AIDS programs in Uganda, NGO health care programs in Guatemala offer a varied profile of services and define eligibility in diverse ways. Some programs focus on specific services like prenatal care or cleft palate repair, while others emphasize comprehensive care. Some programs accept patients based on socioeconomic cutoffs, particular conditions, or catchment regions, and others will help anyone and everyone who shows up at their door.

How do people obtain care in this environment? Let me briefly share three stories, which echo themes from Second Chances.

Silverio, an elderly man, was diagnosed with diabetes at a local government health center. A poor agricultural laborer, Silverio struggled to afford the medications he was prescribed and often went without them. As his symptoms gradually worsened, he reached out to a nephew who worked for an NGO that sponsored a primary care program in a distant village. Silverio was technically not eligible for care through the NGO, as he did not live in the organization’s catchment area, but the program’s administrators made an exception for the sake of his nephew, one of their most hardworking and skilled employees. Silverio now receives check-ups and a monthly supply of medications at the NGO clinic.

At age seven, Eugenio had a large tumor that disfigured his face. His mother Amelia had taken him to private Guatemalan physicians who recommended a surgery and treatments that the family could not afford. She had also taken him to several non-profit clinics and medical missions, all of which had turned them away due to lack of surgical capacity. One day, in the market, Amelia heard about a US-sponsored medical mission that would be visiting a town a few hours away, and decided to take Eugenio there in hopes that the foreign doctors would help them. Yet again, the US triage team explained to her that her son’s problem was too complicated for them to address. But that time, Amelia refused to accept being turned away. “I know you can help us,” she insisted vehemently, thrusting Eugenio’s medical records and an imaging exam into the hands of one of the volunteers. She and Eugenio sat in line all day until one of the volunteer physicians, moved by her dedication, reviewed the paperwork. The physician worked with colleagues in the US to finance Eugenio’s diagnosis and treatment.

Sandra, a single mother, was told at a public hospital that she needed a surgery for a hernia that was impeding her ability to work. Sandra’s neighbors suggested that she visit Mary, an empathetic European woman who had founded a health project in a nearby town. Sandra visited the health project headquarters several times in hopes of encountering Mary, but each time, she interacted with other staff members who told her that the project did not have surgical capacity. Finally, Sandra managed to arrive on a day that Mary was in the office. After hearing Sandra’s story, Mary reached out to contacts to arrange surgical care with a visiting mission team.

What is it that allowed Silverio, Eugenio, and Sandra to access care? Persistence, dogged self-advocacy, and social connections. For each, achieving care is an accomplishment.

Most, including myself, would agree that it is a good thing that Silverio, Eugenio, and Sandra obtained treatment. However, the level of savvy required of each of them, what Whyte would call the “contingency” of their social connections, and the fact that each obtained care through personalistic arrangements raises concern. Throughout my own work in NGOs and as a medical anthropologist in Guatemala, I have seen that those who lack Amelia’s tenacity and Silverio’s kinship ties often go without care. Projectified landscapes inevitably result in disparate access to health care.

This is one of the most important points raised by Whyte’s book, in my opinion. Even as strategy and social networks reward some with access to care, others are left behind.

How can we resolve the haphazard and selective aspects of aid-driven global health work? How can we encourage universal coverage in settings with poor public health infrastructure and numerous “projects” doing the lion’s share of health care provision? How can we build local capacity and strengthen local health systems while providing high-quality care?

There are no easy answers to these questions, but it is urgent that global health practitioners consider the inequalities inherent to projectified healthcare as we work to improve health care coverage worldwide.