Health on Delivery

The Rollout of Antiretroviral Therapy in Malawi

Anat Rosenthal

• Publisher: Routledge
• Year: 2017
• ISBN:
  9781351779975
• Edition: 1
• Topic: Social Sciences
• Subtopic: Anthropology
• Index: Social Sciences

In 2004 Malawi began to offer antiretroviral therapy to anyone who needed it. This undertaking would have been ambitious for any nation, but it was unprecedented coming from one of the poorest countries in the world. Health on Delivery examines this introduction of state-provided antiretroviral therapy from an ethnographic perspective. Moving from World Health Organization boardrooms in Geneva to clinics held under trees in rural Malawi, it studies the patients, healthcare providers, and policy-makers involved, considering how the rollout has impacted their lives and professions. In doing so, it examines both the challenges and successes of an ambitious attempt to provide universal HIV treatment with limited money, infrastructure, and human resources. As well as an important case study, the book also offers an analytic framework to address the processes by which global policy is made and implemented. Engagingly written, Health on Delivery will be interesting reading for students and scholars of both anthropology and public health, as well as related disciplines such as geography, international politics and world development. It will also appeal to the general reader interested in global health policies and world development.

1
INTRODUCTION

Mphatso learned she had HIV when she was admitted to the district hospital with pneumonia. Lying in a bed she shared with another patient in an overcrowded female ward, with dozens of patients’ relatives standing and sitting on every available surface in the ward’s hall, Mphatso realized that her frequent illness and exhaustion were the signs of the disease she feared the most. The nurses rushing by and stopping haphazardly by her bed every few hours were almost always too busy to answer her questions, and even if they had had time to talk, Mphatso was not sure what to ask. She had seen many people with HIV, she had heard the rumors in the village about them, and she knew that many of them died at home without treatment. So, she was adamant about finding the care she needed, especially after the nurses told her of the new HIV clinic that had opened at the hospital.

A slim, soft-spoken woman in her late twenties and the mother of three young children, Mphatso lived in a village in the central district of Malawi. Although she had moved to her husband’s village after she married, her home village—where her parents and sister lived—was relatively close, and they all came to help care for her in the hospital. Mphatso’s sister and mother stayed at her bedside and cooked her food in the hospital’s courtyard with other patients’ family members. Although Mphatso was too weak to eat, she was grateful for their presence, knowing that patients without family members were left to fend for themselves in a ward short of nurses and support staff. After a week of recovery from the pneumonia, she was released, but the doctors told her to return to the hospital’s HIV clinic as soon as possible—she needed to get a CD4 count, which would determine how far her infection had progressed and whether she was eligible for HIV treatment.

Returning to the hospital was not an easy task, however. It was more than a 6-mile trek from her home in the village, and Mphatso could not afford to pay for a ride on a minibus or a rental bicycle. This was a long walk for a woman still weak from a bout with pneumonia. Several weeks passed before she felt strong enough to make the journey. Finally, one morning she left her children with her sisters-in-law and made her way to the HIV clinic. Although the staff at the hospital had told Mphatso about the new HIV clinic, she was not sure what to expect. She had heard of people being treated for HIV, but these stories were vague and unclear because most people were reluctant to talk about their illness, fearing gossip and stigma. Now, Mphatso was one of them, even though she was not sure what “them” meant.

When Mphatso arrived at the clinic in the early hours of the morning, it was already crowded. People were sitting on the stone benches in the waiting room, on the front balcony, and on the grass outside the clinic. The quiet hum of conversation surrounded her, interrupted by bursts of laughter or a crying baby. Although she was nervous, it seemed like other people in the waiting room were calm, as if they knew what to expect and were not worried about it. Mphatso noticed that although some people looked very sick and were leaning on family members or lying on the benches, others looked healthy and were chatting happily. Many looked tired and frustrated as they waited to be seen by the clinic’s staff. It was 3 hours before Mphatso was invited to come into the nurse’s office. After a short conversation and a quick look at the documents she had brought from the ward after her hospitalization for pneumonia, the nurse told her that the test she had come for could not be performed at the clinic after all. The nurse was kind and apologetic when she informed Mphatso that the lab was having equipment problems. Instead of being tested at the hospital, she would need to go to a mission hospital, a half-an-hour ride on the bus away, to have the test done—but there, the test was not provided free of charge.

By this time, Mphatso’s head was pounding, as it often did when she was sick, but the nurse was unable to offer her anything for her headache because the clinic was out of painkillers. Instead, the nurse suggested she buy some medicine at a local kiosk in the small market outside the hospital. Before Mphatso left the clinic, the nurse told her about life with HIV, encouraged her to convince her husband to get tested, invited her to join a support group in the clinic or find one in her village, and reminded her to get the CD4 count from the mission hospital before her next appointment at the clinic. Mphatso left empty-handed, stopping at a kiosk outside the hospital and spending what little money she had on some Panadol¹ for her headache. She began the long walk home knowing that there was no way she could afford to travel to the mission hospital, much less pay for a CD4 count there. Mphatso knew that the nurse knew this as well. Exhausted and with a pounding headache, she made her way back to her village, unsure of what would happen next.

A few weeks later, Mphatso heard a rumor that the lab at the clinic was up and running again. Having missed her scheduled appointment—which seemed pointless without the CD4 count the nurse had requested—she made another trip to the clinic. Happily, the rumor was correct. The nurse she had seen on her first visit drew her blood and told her to return in 2 days with a companion, someone to act as her treatment supporter, to receive the results.

Of course, she was not able to make the long journey again in 2 days, especially because it required her to ask the relatives who had already been watching her children quite a bit to watch them yet again—and this time, she also had to find a treatment supporter to join her on the trip. It was a week before she returned to the clinic with her sister. Although Mphatso’s diagnosis confirmed her fears, Mphatso’s sister found the months of unexplained illness worse and was happy to stand by her sister. When Mphatso arrived at the clinic, she was told that she was ineligible for HIV treatment because her CD4 count was just over the treatment cutoff. Instead, she was prescribed cotrimoxazole preventive therapy, which staves off some of the opportunistic infections to which people with HIV are susceptible. The nurse’s explanation left Mphatso confused. She had made three long journeys to the clinic and back, only to find that she was not eligible for the antiretrovirals she needed.

Eventually, Mphatso did start antiretroviral treatment, but it was not until months later, when she was hospitalized again for pneumonia. Mphatso’s health improved quickly. The first thing she noticed was her appetite returning; she was no longer nauseous at the sight of food and could actually hold it in. Then, she started feeling stronger, her headaches and dizziness subsided, and she started gaining weight. Mphatso was grateful to enjoy the fruits of medical science. She was well aware that only a few years ago, obtaining this life-saving treatment free of charge in Malawi would have been unimaginable.

But, receiving treatment did not mean that all was resolved for Mphatso. First, now that she was feeling better, and hungry again, she struggled to find enough food to sustain her and her children. Second, although she was stronger, the monthly walk to the hospital to top up on antiretrovirals was still long and often futile, due to drug stock-outs. With no transportation money, each walk to the clinic and back, combined with the long wait there, meant Mphatso was away for the whole day. By the time she returned home from the clinic, she was tired and impatient and her children were restless. No less important, Mphatso was trying hard to keep her illness private for fear of comments she might get from her family and neighbors, but the frequent daylong visits to the clinic made it difficult for her to keep her HIV status a secret. Lastly, when Mphatso needed medicine for the side effects caused by the antiretrovirals, none were available at the clinic. Treatment may have saved Mphatso’s life, but it did not necessarily make it easy.

The Antiretroviral Rollout in Malawi

Mphatso’s story illustrates everything good and bad about being a patient with HIV in Malawi. On the one hand, Mphatso is a citizen of a country that did something amazing. In 2004, it began to offer antiretroviral therapy (ART) to anyone in need. And, there was a great deal of need in this small, sub-Saharan African country. By 2004, an estimated 1 million of Malawi’s 12 million inhabitants were living with HIV; this translated to nearly 15% of adults (UNAIDS/WHO 2004; WHO 2005). The AIDS crisis was noticeable wherever one went in Malawi. Hospital wards were overcrowded with patients who were dying without treatment, and overworked healthcare providers were frustrated by their inability to assist their patients. In the villages, families and communities were devastated by the disease; in almost every household, someone was sick or dying. Classrooms were overcrowded because so many teachers had been lost to AIDS; shops were closing as shopkeepers died; and carpentry shops converted from making furniture to making coffins, a change that became evident as signs for coffin shops started to replace other advertisements on the side of the road. Although many people were reluctant to openly talk about AIDS, the word was whispered in numerous conversations and its effects were visible everywhere. In the face of this need, Malawi decided to make treatment free of charge in all public facilities—and to limit fees in private ones (Makombe et al. 2007; Muula et al. 2007).

To say that Malawi was facing an uphill battle is an understatement. Malawi is one of the least developed countries in the world. According to the 2004 Human Development Report published by the United Nations Development Program (UNDP), life expectancy at birth was 37.8 years, GDP per capita was $580, and 40% of the population did not have consistent access to clean water. In the same year, 76% of the population was reported to have an income of under $2 a day (UNDP 2004), and the country was heavily dependent on international aid. For the 82% of Malawians living in rural areas (WHO 2005), access to clean water was not the only challenge. Most rural communities were not connected to the electrical grid or to sanitation systems, and they had little to offer in terms of quality education or employment opportunities. In addition, rural residents were mostly small-scale farmers in a region that suffered from droughts and floods. These small-scale farmers suffered under economic policies that supported the removal of agricultural subsidies in the name of market liberalization, and they had only limited access to subsidized fertilizers and farm inputs. For the small proportion of the population living in cities, electricity was more accessible, but access to clean water was still an issue. Furthermore, city life limited the possibility to farm, which meant that food required participating in a cash economy when jobs were scarce and low paid. Life in both rural and urban areas was made worse by the AIDS crisis. Rural farmers were unable to cultivate their fields, and urban laborers were too sick to work and found life in the city increasingly expensive without employment.

In addition, when the ART rollout began, Malawi’s healthcare system was severely underfunded, with total annual expenditures on health a mere $17 per capita (McCoy et al. 2008). Translated to people’s everyday lives, these data meant that health services were very limited in scope. Clinics and hospitals were understaffed, and even when a patient got to see a healthcare provider, medications were often unavailable. This meant that patients and their families had to purchase drugs in private pharmacies. For a population living on less than $2 a day, medications from private pharmacies were unattainable, especially when chronic or complex diseases were involved. In addition, only 50% of the population in the country lived within 5 km (over 3 miles) of a health center (Ministry of Health 2004); health services were, de facto, inaccessible for most of the country’s residents, who were living in rural communities and too poor to pay bus fares.

Furthermore, the HIV crisis hit healthcare workers particularly hard, magnifying an already severe shortage of personnel (Kober and Van Damme 2004; McCoy et al. 2008; Muula et al. 2007; Palmer 2006; Van Damme et al. 2008). Even within the context of sub-Saharan Africa, the epicenter of the crisis, Malawi’s healthcare workforce shortage was striking (McCoy et al. 2008; Van Damme et al. 2008). A study conducted in 2007, based on data from the Ministry of Health and the National AIDS Commission, revealed that only 610 clinicians (clinical officers and physicians), 44 pharmacists, 98 pharmacy technicians, and 7264 nurses were registered in all of Malawi. In a country of over 12 million people, these numbers meant that the current health workforce was unable to serve the needs of the population even without the growing needs created by the AIDS crisis. Providing ART to the 170,000 HIV-positive patients estimated to be eligible for treatment inside Malawi—people whose HIV status met the criteria defined by the Ministry of Health—would require 16% of all nurses, 454.2% of all pharmacists and pharmacy technicians, and 55% of all clinicians to dedicate themselves solely to the care of people with HIV/AIDS (Muula et al. 2007). Clearly, this was not possible. Especially in a country with many competing health concerns, and where many healthcare professionals were already overworked, finding the healthcare workers to deliver therapy was a grinding challenge.

This shortage meant that, just prior to the rollout, there were simply not enough healthcare providers to staff hospitals, clinics, and health centers. District hospitals serving catchment areas of over 100,000 people were staffed with single physicians, and the clinical officers and nurses the physicians relied on were also in short supply. Just one or two nurses treated wards that were overflowing with patients. Hospital labs were practically shut down without technicians available to staff them or the electricity needed to operate their equipment. In the more remote rural areas, services were even sparser. Physicians and clinical officers could only be found in towns and cities; so, rural health centers were staffed by lone nurses or health workers. To see a physician or a clinical officer, people living in rural areas had to make the costly trip to the nearest town or city. As a result, problems that could not be addressed by the local nurse often went untreated. To make things worse, these needs were constantly growing with the AIDS crisis.

HIV/AIDS care is an expensive and complex endeavor by any means. Finding the resources to pay for medications, chronic care, and management and to train healthcare providers specializing in long-term AIDS care requires a concerted effort. Even rich countries, among them the USA, shy away from providing free, universally accessible AIDS care, citing costs and the structure of their health systems as the rationale for failing to provide treatment. Consider for a moment that in 2003, fewer than 1 million people in all low- and middle-income countries combined received ART (WHO 2006). Malawi was proposing to screen and provide ART to a similar number of patients—just within its borders. How was this small, poor country to deliver ART to everyone who needed it?

A Country Transforming: Malawi, 2004–2009

My work in Malawi, which started in 2004, bracketed the ART rollout. I was thus privileged to witness this ambitious plan for healthcare delivery as it played out. During repeat visits to the country, focusing on various research projects, I went back to the same rural communities, health centers, hospitals, and non-governmental organizations (NGOs) and was able to observe changes occurring over time. These changes transformed the face of AIDS in Malawi. When I first arrived, in February 2004, AIDS treatment was a privilege enjoyed only by the super-affluent, who could afford to fly to South Africa, and a few lucky urbanites, who had access to services provided by international NGOs for high out-of-pocket payments. In rural communities, the existence of HIV treatment was only a rumor.

Although the government decided to provide universal access to HIV treatment in 2004, things did not change overnight. On my visits to Malawi in 2005 and 2006, the situation in most rural areas remained unaltered: No ART was provided. Most facilities offering therapy were located in Lilongwe, Malawi’s capital, and Blantyre, its commercial center, and they were part of big government hospitals or private NGOs. Moreover, treatment almost always still required some payment. In rural district hospitals, word about ART was spreading, however, and some hospitals were even opening new clinics, although their operations were very limited.

When I returned in August 2007, a brand-new AIDS clinic was operating in a rural district hospital where I had worked in the past. Its staff and facilities may have been limited, but it offered treatment to patients with HIV in the surrounding communities. It also continued to offer mobile counseling and testing clinics, services available in the days before treatment was available. In addition, the staff at the ART clinic met monthly with clients receiving ART and held support group meetings and nutritional support sessions. However, although the staff was eager to recruit new patients, the clinic was unable to reach many potential clients. Many of its “regulars” were hospital employees or people living in the little town surrounding the hospital. Rumors of a new HIV clinic were spreading in the villages, but people were reluctant to come. The service was new, and years without available treatment had created distrust, not to mention the fear of unwanted disclosure that was still associated with HIV care in Malawi.

When I returned to that clinic in 2008, it had transformed. Now, it staggered under the weight of over 2000 registered patients; the nurses and clinical officers grumbled about being underpaid and overworked. However, the crowd in the waiting room spoke to the demand for testing and treatment in the surrounding communities. This particular clinic, though close to my heart, was in no way unique. Its experience of struggling under such a heavy patient load was shared by many other health facilities around the country. In early 2004, just after the initiation of the new treatment policy in Malawi, 4000 new patients were put on ART countrywide. By the end of 2005, the cumulative number of new patients receiving ART in the public sector was 37,840, representing 47% of the national target at the time (Libamba et al. 2007). By the end of 2006, approximately 60,000 people were on treatment (McCoy et al. 2008).

In 2008–2009, I spent 4 months embedded at the clinic. On the 3 days a week that the clinic was open, I shadowed providers or patients to learn about the challenges they faced. When I shadowed a nurse, for example, I would start the day by arranging the treatment room with her, and then I would stay by her side as she saw patients, ran errands, and updated patients’ logbooks. I would also join the staff at lunch...