The Caregivers’ Disease
The London Review of Books
By Paul Farmer
May 13, 2015
(Click here to view the original article.)
Graham Greene’s Journey without Maps is an account of a trek he made across West Africa in 1935. He started in Sierra Leone, then a British colony, crossed through a sliver of French Guinea, and then slogged across the Liberian jungle. The walk took an entire month. Not long after leaving French Guinea, Greene was almost felled by an unidentified fever. It was in these forests that Ebola, previously thought to have been restricted to a couple of dozen local epidemics in other parts of Africa, erupted at the close of 2013. Many people asserted (rashly, perhaps) that it was new to West Africa.
Ebola has long been considered singularly lethal. It was well known when I was completing my infectious-disease training in the mid-1990s. None of us had ever seen it; we’d only read (or written) about it as one of the most important of the ‘emerging infectious diseases’. But it was the case-fatality rate that staggered us. Most infectious pathogens – whether bacteria, parasites or viruses – infect millions; they kill a small minority (sometimes close to none) of the infected. In most documented Ebola epidemics, it killed the majority of those infected, including nurses and other caregivers.
Infectious-disease doctors may have had an unhealthy fascination with Ebola. But not entirely unhealthy, since Ebola and related pathogens seemed sure to be a bigger problem in the future. How could a zoonosis, once it jumped from animals to people and readily spread from human to human, not spread where health systems were weak, and where people were invading the ecosystems in which the viruses persisted, whether in bats or other animal hosts?
Greene’s first African journey began in Freetown and ended in Monrovia. The Heart of the Matter is also set in Freetown during the Second World War, when he was there for British intelligence. Eighty years later, he wouldn’t recognise these cities, transformed by civil war and other less obviously violent social changes, including massive growth, brisk trade and the proliferation of new social institutions, including nongovernmental organisations focused on health and development. One thing Greene would recognise, though, is the absence of strong local institutions that might diagnose and stop such outbreaks and care for the afflicted. Freetown is a city that has had a long and troubled history.
Many of the region’s troubles were related, in one way or another, to epidemic disease. This was true since Freetown’s founding, in 1792, by British abolitionists and their protégés; it was true almost 140 years later, when Greene fell ill. It probably wasn’t with malaria, then the region’s biggest infectious killer: he was taking daily doses of quinine. From the outset of his trip, several ports were closed by epidemics of yellow fever and plague. Trypanosomiasis – African sleeping sickness – had been well described in the region, where French colonial health officers shared their knowledge with British counterparts. For centuries, and with reason, European visitors to equatorial Africa feared these fevers. The chief victims weren’t the colonisers or their successors, but the people Greene called ‘the natives’. This is still true, though the list of known afflictions has grown to include Ebola and other haemorrhagic fevers, among them, Lassa and Marburg.
Greene made his journey through the equatorial forests with a retinue of 26 porters and hammock bearers, two personal attendants and a full-time cook. His cousin Barbara went too (she said she was 23; Tim Butcher, in Chasing the Devil, reports her age as 27), though Greene scarcely mentions her. Her account of the trip was published in 1938, under the title Land Benighted. It was soon out of print. In his introduction to an edition published in 1981 as Too Late to Turn Back, Paul Theroux describes her as ‘modest and a bit self-mocking’. At one point she recounts her attempts to tell a rural Liberian schoolteacher about her home town: ‘The London I had described of crowds, and hurrying motor vehicles, noise and underground trains, that was terrifying. It all sounded horrible, and I almost felt that I did not want to go back – till, of course, I remembered Elizabeth Arden, my flat and the Savoy Grill.’
Reading both books in Liberia made me wonder whether hers isn’t the better. Journey without Maps is solemn and erudite; Barbara Greene’s version of the trek is clearer-eyed: ‘I knew perfectly well,’ she wrote, ‘that my journey through Liberia would bring no benefit whatsoever to humanity, and that certainly we would contribute nothing new to the scientific world. We were even incapable of describing the birds and plants that we saw, and had no idea if they were really rare or strange.’ She knows when she isn’t up to snuff, which by self-report is most of the time, a condition she attributes to the suffocating heat. Greene may have been wrong, however, about her contribution to medical history. All around her, ‘natives were walking about with smallpox, yaws, elephantiasis, and covered with venereal sores. A horrible sight, which we saw in every village we stayed at.’ When she stumbles into an abandoned settlement, she asks the right question: ‘It was an eerie sight. Most of the houses had fallen almost into ruins, but a few were standing more or less complete … Had there been a fight, or had some horrid disease emptied this village of human life?’ Although we have been assured, during the past year, that Ebola is new to West Africa, there is some evidence, from studies published in the 1980s, that the same strain has been present, in Liberia and Sierra Leone, for decades. But who knows what might have emptied out a village? Epidemic disease was everywhere. The Greenes shared their Epsom salts with the ‘natives’, but kept their quinine for themselves.
As the Greenes observed, even the most dedicated medical missionaries couldn’t make up for weak or absent health systems. Such systems were proposed as the region’s colonies sought to become independent states, a period that coincided with the birth of modern medicine. But important medical discoveries weren’t much help either in places with weak or absent health systems.
The systems only got weaker during the region’s civil wars, which started in the closing years of the last century. Sierra Leone was soon known for its grisly amputations – a warning from rebels to civilians not to vote in government-sponsored elections. In 1999, the rebels set Freetown’s main referral hospital, a colonial relic called the Connaught, on fire: punishment, some said, for providing care to the amputees.
With the cessation of hostilities came ‘the crisis caravan’ as the journalist Linda Polman described it. Peace accords and international peacekeepers allowed a vast machinery of humanitarian assistance to operate in Sierra Leone and Liberia: it helped to slow and sometimes halt camp epidemics from cholera to Lassa fever; to restart vaccination and family planning programmes; and to initiate efforts to prevent and later to treat Aids. The humanitarians also started programmes to address visible and invisible wounds. It would have been hard to find any families that had not suffered emotional trauma of some sort during the conflict, but it was also clear that problems such as road accidents, cancer and obstructed labour were not going away because the war was over. Even before Ebola made people afraid to go to hospital, Sierra Leone had one of the highest maternity mortality ratios in the world; in recent months it has risen substantially. By most accounts, the perils now facing pregnant women in countries affected by Ebola are no different from those faced by their forebears centuries ago. They are probably worse.
Several of the humanitarian groups assigned themselves to the epidemics that had earned the region such colonial epithets as Fever Coast. But many of them focused on a newer plague, another zoonosis from equatorial Africa. Resources to address Aids were more abundant than resources to address more common diseases and injuries, even though Aids was less widespread than many of the afflictions seen by the Greenes seventy years earlier. Since many in the crisis caravan follow the money, which comes with strings, the people working in Aids-focused programmes often ignored other types of misery.
Adia Benton is an anthropologist whose new book, HIV Exceptionalism, is based on research conducted in Sierra Leone just after the war.＊ It’s a withering critique of ‘the carving up of spaces and distribution of resources to people according to the presence or absence of HIV antigen or antibodies in the blood’. This is an ‘ideological verticality’ that holds that ‘HIV is exceptional and requires separate funding, programmes and personnel.’ Exceptionalism – it applies to Ebola too – ‘reproduces and reflects global hierarchies in relationships between the various donors, NGOs, and government agencies and community-based organisations that comprise the Aids industry.’ These relationships, many of them reflections of old asymmetries, further complicated the relationship between a frail state, with little to offer in the way of healthcare, and citizens in great need. Benton describes the resulting paradox, which is by no means particular to this part of West Africa: ‘On one hand, Sierra Leoneans lament the inadequacy of the state to provide care for its citizens. On the other, they uphold its indispensability as the embodiment of sovereignty and social order and see the state as an entity capable of providing care through its policies.’
Between the publication of the Greenes’ memoirs in the 1930s and Benton’s ethnography in 2015 stretch decades of neglect of the destitute sick, some of it the result of bad policies. These policies, whether implemented or not, were issued by fading colonial governments and later (earlier, in Liberia’s case) by frail or failed states. The rise of neoliberal logic made it still harder for some states to address such neglect, especially when the pathologies in question were considered difficult and costly to deal with: programmes that might have been effective, whether public or private, were widely dismissed as low priority, unfeasible, unsustainable and (the greatest insult in the international health lexicon) not cost-effective. This logic and its attendant policy prescriptions did not originate in West Africa, although they were widely echoed there. In this regard at least, Aids treatment programmes were a welcome counterbalance to neoliberal notions of surrender and contracture. They have saved millions of lives.
What’s to be done about all the other neglected health problems? Is setting priorities for people shut out of medical progress a worthy project for people who are not shut out? In clinical medicine, it’s important to get the diagnosis right, and that means sifting through different kinds of information, from patients, from laboratory and other diagnostic studies, and from colleagues. Over the last few years, the Lancet has published a series of diagnostic reports seeking to take current evidence and offer forward-thinking syntheses of some of the major problems facing medicine and public health as currently practised. One of the most influential of these commission reports, published two years ago, described a possible ‘grand convergence’ of life expectancy across the globe, as well as significant recent progress in closing the gap. This was due, in part, to economic growth, improved nutrition and increased literacy among women and girls and in part to public-health and medical interventions: massive vaccination campaigns, efforts to prevent and treat malaria and diarrhoeal disease, and increased uptake of family planning. But it was due, too, the commission concluded, to major international investment in the treatment of Aids in the countries most burdened by it, where it had also led to deadly epidemics of tuberculosis.
These programmes, though far from perfect and a long way from success, are on-track in some regions of the world – including parts of central, eastern and southern Africa – for a simple reason. Unlike most medical care for the world’s poorest billion, Aids treatment is paid for not by patients but by a mix of public investment and foreign aid. But Aids exceptionalism is not inevitable: the more such resources, unprecedented in the history of public health and medicine, were used to strengthen primary care systems (Aids after all was, by 2000, the leading infectious cause of young adult death), the better and more enduring their effect on health outcomes across the board. In this regard, post-genocide Rwanda offers a striking counterpoint to – and an example for – the countries most affected by Ebola. Rapid declines in mortality in Rwanda are the result of policy and investment rather than dumb luck or happenstance.
What about severe injuries (whether sustained in war or road accidents or self-inflicted) or cancer? The great majority of deaths classed under these broad categories occur in ‘low and middle-income countries’. What about unexpected catastrophes such as Ebola? The quasi-totality of deaths due to Ebola have been in Africa. Is there hope for any ‘grand convergence’ when the illnesses in question require care delivered in emergency rooms, operating theatres or intensive care units? It would seem not.
I’ve been fortunate enough to participate in a couple of Lancet commissions, most recently in Global Surgery 2030, which has just been released. The report is dedicated to Dr Edgar Rodas, a fellow commissioner who died of cancer in March. The Ecuadoran poor had long been deprived of surgical care by geographical barriers (altitude, poor mountain roads) and inclement weather, but also by social barriers: the clinical failure caused or aggravated by poverty, racism and gender disparity. Rodas and his wife created mobile operating theatres to bring surgical care to the poor.
The surgeon Martin Salia, who contributed to the commission’s work at its second formal meeting, held in Sierra Leone in June 2014, died of Ebola on 17 November. He was 44 years old and one of only a handful of surgeons practising in a country of six million people. Dr Humarr Khan, Sierra Leone’s only specialist in viral haemorrhagic fevers, died of Ebola in July. Khan worked in Kenema’s public hospital and ran the world’s only Lassa fever ward. He died far from the kind of care that might have saved him.
The link between safe surgery and the world’s largest Ebola epidemic was the subject of much discussion even before the Freetown meeting. The Lancet commission sought to be broadly consultative and to focus on ‘resource-poor settings’. Among the resources in question are the people, the physical infrastructure and the supplies needed to provide safe surgery, with anaesthesia when needed. Previous estimates had suggested that two billion people lacked such care. But what if the aim was ‘universal access to safe, affordable surgical and anaesthesia care when needed’, and the prevention of one of surgery’s chief unintended consequences, catastrophic health expenditure, a leading cause of destitution in the world today? Insurance coverage, especially if it’s publicly funded, varies inversely with the risks of catastrophic illness: the poorest are the least likely to enjoy the protection afforded by social safety nets, including health insurance. When these filters are added, the Lancet report concludes, the number without access is closer to five billion.
The perverse relationship between risk of serious illness and access to care and insurance is deadly in the poorer countries in Africa. Many of Sierra Leone’s deaths in childbirth are due to obstructed labour, a leading indication for surgical delivery. But high maternal mortality is just one marker of failure to deliver on medicine’s promise. A 2013 study by a team including another Lancet commissioner, T.B. Kamara, compared the surgical care in Sierra Leone’s district hospitals with what was available in the Union Army’s field hospitals during the American Civil War. They concluded that the working conditions of the Union’s surgical teams, and their outcomes, were ‘equivalent and in many ways superior’ to those available to Kamara’s fellow citizens.
The Sierra Leone meeting was scheduled for mid-June; by late May, the organisers were receiving emails questioning whether Freetown was a safe venue: Ebola was heading west. It had caused hundreds of deaths, most of them among caregivers, professional and familial. When families can’t count on medical facilities – and Kamara’s report was a vivid reminder that they could not – the caregivers are often ‘traditional healers’ rather than doctors or nurses. And poor families can’t count on professional help in burying their dead.
Those days in Freetown and the events that followed – which unspooled like a slow-motion replay of a disaster – changed my life. Partners In Health, a medical charity, focuses on strengthening public care delivery systems. Most of our work has been in rural Haiti, Mexico, Rwanda, Malawi and Lesotho; we had worked in peri-urban slums, and in jails and prisons from Siberia to Peru, but never before in West Africa. We now count close to 1500 co-workers in Sierra Leone and Liberia (with a small Haitian team in consultation with Guinean health officials). At least a quarter of them are Ebola survivors. Such work is never without setbacks, disappointments and loss. Partners In Health didn’t move quickly enough to make much of a difference in preventing Ebola’s ‘Western surge’. The expression echoed the brutal march of the civil wars.
Our efforts didn’t save Martin Salia or Humarr Khan. We knew that the conference would have no immediate impact on the epidemic, but thought our presence might serve as an expression of solidarity. The day after many of us left Freetown, Médecins sans frontières declared the 2014 Ebola epidemic completely ‘out of control’. By then, Khan’s colleagues in Kenema had begun to sicken and die. There were many reports of health professionals abandoning their posts, but it was more notable that some of the doctors who knew most about the risks remained at work. Over the course of a few days, Khan’s Lassa fever unit had become an Ebola treatment unit, but without the staff, stuff, space and systems needed. He was critically ill by the third week of July. Friends and family tried to have him airlifted to a European hospital where he might receive critical care, but he died in an Ebola treatment unit in Kailahun on 29 July. He was 39 years old.
When the Kailahun unit later published its case-fatality rates, it noted that the highest risk of death was among healthcare professionals. More than two-thirds of the doctors and nurses admitted to Kailahun died. This has not been the case for health professionals – most of them American or European – who were airlifted to centres able to provide supportive and critical care. The numbers (which wouldn’t vary much for many of the bellwether surgical pathologies, such as acute appendicitis, if left untreated) are telling: case-fatality rates in the 2014-15 Ebola epidemic have been about 70 per cent, without much improvement over the course of the year. Among those transported to European and American hospitals, case-fatality rates have been under 20 per cent; among American citizens shipped home, none has died.
Martin Salia’s fate was the same as Khan’s, but the path towards it differed in important ways. Both had been refugees during the war. Unlike Khan, who returned from brief asylum in Guinea, Salia emigrated after the conflict to the United States. But his real calling, he felt, was as a surgeon in Sierra Leone: he returned to Kissy, a poor part of Freetown, to work at the United Methodist Church’s hospital as chief medical officer. He worked in other hospitals too, including Connaught, which since the war had been unable to resuscitate its formal training programmes in surgery, anaesthesia and surgical nursing: by one count in 2014, there was only one anaesthetist and one senior surgical nurse in the country’s chief public referral hospital, meant to be the safety net for the poor.
When safe surgical care is available, it is often expensive and results in destitution. The same holds for critical care, required in acute illness (such as Ebola) or injury that results in renal, hepatic, cardiac or respiratory failure. Such services were available only to those Sierra Leoneans who could get them in another country. Like Khan, Salia knew this. But he had a better chance of getting them because he had a green card.
Salia fell ill with fever and gastrointestinal symptoms in early November. An initial Ebola test was negative, leading to premature celebration. But the ability to identify the pathogen quickly is hampered by many factors, including a lack of reliable, rapid, point-of-care diagnostic tests for Ebola – then undergoing field tests but still unproven. Like many symptomatic clinicians working in the epidemic, Salia may have clung too long to the relief triggered by a negative test. It was almost a week before a second test, on 10 November, revealed the cause of his rapidly worsening symptoms, which included renal insufficiency and hypovolaemia from vomiting and diarrhoea. The surgeon was referred to a new Ebola treatment unit built by the British military, but did not meet the criteria for admission, as he hadn’t been working in an ETU. (Children with Ebola didn’t qualify either; nor did community health workers.) These diagnostic and bureaucratic delays meant that aggressive supportive care, including fluid resuscitation and electrolyte replacement, as well as simple therapies to diminish diarrhoea and nausea, were also delayed. Soon, only critical care offered any hope of saving Salia.
In Washington, efforts to bring caregivers like Khan and Salia to US hospitals were quietly favoured by some in the US State Department, but quashed by others as the threat of Ebola became a ranking issue in the congressional elections held in the week that Salia fell ill. According to sources in the United Methodist Church, Salia’s wife mustered the $200,000 (or promises of it) to fly him on a private biocontainment plane to Omaha, where critical care could be delivered to Ebola patients. But it was too late.
It’s easy enough, and true, to say that the ultimate cause of Khan’s and Salia’s deaths, and those of their colleagues and patients, was the failure to build a proper healthcare system, which would reach from surveillance to clinical care, in the countries most affected by Ebola. But as Global Surgery 2030 argues, to blame the deaths on only one aspect of our collective failure to invest in robust health systems, and in the training and research they require, would be a grave error.
The last known flare-up of Ebola in Liberia, the Saint Paul River Bridge outbreak in March, began with a transmission chain involving 11 people. All of them died. Barbara Greene crossed the Saint Paul River many miles upstream, on a raft, on the day she came across a deserted village and wondered if ‘some horrid disease’ had ‘emptied’ it. Greene and she became separated, having inadvertently taken different paths. As usual, she wasn’t frightened: ‘I had most of the men, the money, the food, the beds, the mosquito-nets, the quinine – in fact, everything. Come what may, I should be all right. But I must search for Graham. However hard I wracked my brain I could not remember the name of the village we were aiming at, and the men had forgotten it too. It began with B, but that was not enough to be of any use.’ The cousins found each other: ‘The saint that I had felt looked after the fools of the world was keeping too close a watch on us,’ Barbara wrote. ‘Nothing exciting would ever happen to me, for something would always guard me.’
She was right, and she was also able to identify what that something was. Not a saint, but good luck and a family fortune (with origins, she noted in reissuing her memoir, in the colonial sugar trade that once linked Britain to both West Africa and the Caribbean). Neither she nor her cousin would have had much difficulty finding the equivalent of $200,000 in order to save their lives from whatever had wiped out an entire village.
If the culprit had been Ebola, would Barbara Greene have survived an encounter with it? Perhaps not, but even in 1935 there was a lot that could be done to save lives imperilled by hypovolaemic shock. In other words, even in the pre-antibiotic era, even in the White Man’s Grave, there’s little evidence that the non-poor faced the risks of the poor – whether the risk of infection or the risk of poor outcomes once infected. This is true for me and for my American colleagues, as it was for all ten of the Americans who fell ill with Ebola over the past year. It was true for those who fell ill near the Saint Paul River Bridge: 100 per cent survival v. 100 per cent mortality.
These are the grotesque disparities of both risk and outcome that drew Martin Salia back to Sierra Leone. These are the disparities that kept Humarr Khan in Sierra Leone throughout his professional life. They drew in many American, European, Haitian, Rwandan and Cuban colleagues, including one who recently fell ill with Ebola and survived thanks to excellent supportive and critical care in the US. They have inspired many people working, far from West Africa, on research that might lead to effective vaccines, faster diagnosis, and effective and specific treatment for the disease. They are the disparities that led Edgar Rodas to develop mobile surgical units to reach the Ecuadoran poor and the disparities addressed, at least on paper, in Global Surgery 2030.
If we are to honour the memories of those who died from this caregivers’ disease, we would do well to muster the resources and resolve to build strong healthcare systems in those parts of the world that have never known them.