Douglas Webb
Abstract: Epidemics are social events, and as new health threats emerge in Africa we are repeatedly faced with the need to learn lessons from the past. AIDS has been the great teacher as we look forward to face the complex health environment of today, which is characterized by overlapping epidemics of infectious and noncommunicable diseases. Countries now grapple with the need to increase their accountability and make difficult choices over the use of financial and political capital. AIDS taught us again that addressing all types of threats to health relies on engaging with affected communities while placing human rights above the institutional prejudices and failures that allow epidemics to thrive. The lessons of the past, however, seem quickly forgotten.
Keywords: health, epidemics, AIDS, Ebola, Zika
HUMAN DEVELOPMENT IN AFRICA REQUIRES a healthy population. Economic growth, the same. Yet ill health and its causes continue to present a significant paradox. Technological advances should have made many common health problems obsolete or at least very rare: HIV, TB, water-borne illnesses, malnutrition, preventable childhood infections, and so on. The list is as long as it is unnecessary. So why do we tolerate ill health on a wide scale? Have we learned anything from prior experiences, especially the responses to the HIV pandemic?
Nearly twenty years ago my book HIV and AIDS in Africa was released into a research community that was desperate for any good news about the HIV pandemic. Rates globally were rising, and prospects of an affordable treatment were some years away. The book described the socioeconomic environment of southern Africa, in which the virus was rapidly spreading. The conclusion was as simple as it was unwelcome—that the epidemic was as much a political event as it was a biological one. Political transition, combined with the fallout of structural adjustment, occupied the minds and pockets of both the powers that be and ordinary citizens. In the two decades since then, little has changed, and arguably the future of the HIV epidemic in Africa, as well as of other existing or emerging epidemics, will remain determined by political and social forces.
When confronting epidemics we need to consider two major groups. The first group is infectious diseases—characterized by, first, the continued presence and transmission of familiar bacteria and parasites such as tuberculosis, malaria, and schistosomiasis; and by, second, the outbreaks of new infectious agents such as HIV, Ebola, and Zika. The second group consists of noncommunicable diseases (NCDs) such as diabetes, cancer, and cardiovascular diseases. Populations experience both groups, all the time, even though attention flits between specific conditions and the spotlight rests on one condition, potentially to the detriment of combating others. Responses to diseases have become just that: disease responses, as opposed to public health and people-centered responses. Societies shift attention from one malaise to another even as overlapping epidemics actually define the health landscape and people’s experience of ill health. Political processes and those that govern resource allocations have preferred to categorize health into defined and specific conditions and experiences. Financial streams and the associated building of skills and assets in health systems have thus tended to favor certain diseases and subsequently discriminate between diseases burdens. After all, in a context of finite resources, prioritization is inevitable, is administratively expedient, and allows greater accountability in health system governance, no?
But making choices has its downsides; people experience ill health and insults to well-being through immediate and visceral means, irrespective of preferred health financing trends or projections. I learned this early on. Even when conducting field research for my book in 1992–93, it was clear that HIV was a secondary concern for both urban and rural South Africans, at a time when the “West” was prioritizing AIDS in health discourse above all else. Top of the list of concerns of hundreds of citizens I interviewed were TB, gastroenteritis, and “hi-hi,” or hypertension. AIDS was ninth on the list overall. AIDS was yet to hit hard, and even though adult HIV prevalence rates were already over 1 percent, it had yet to infect people’s consciousness in a meaningful way. While HIV is now, rightly, a regular feature in the health-risk landscape, it is part of a double epidemiologic burden currently confronting much of sub-Saharan Africa—that of overlapping and concurrent infectious and NCD epidemics. Cardiovascular disease, diabetes, chronic lung disease, and cancers now vie with HIV, malaria, TB, and water-borne diseases, as well as a nefarious host of other infectious ailments, for financial and political attention.
NCDs, of course, have not suddenly appeared in Africa. However, attention has been focused elsewhere. But their presence is inexorably on the rise, all the while shadowed by preexisting health commitments. One in four African adults are now hypertensive, with a further one-fifth at high risk of becoming so. The stage is set for a growing pandemic of cardiovascular diseases, including stroke, as well as diabetes and renal failure, among other associated conditions. In confronting a new pandemic of NCDs, what lessons can responses to AIDS and other epidemics teach us?
Epidemics happen in social spaces. The ongoing experience in responding to HIV helps us to understand this insight. Pragmatism dictates that when deliberately confronting new (or previously ignored) epidemics, it is wise to strategize with the assets that you have in place. A collective analytical effort is ongoing to assess how the considerable infrastructure assembled and dedicated to HIV prevention and control over the last three decades, worth billions of dollars, can be utilized, built on, or repurposed for a range of health conditions. This “learning from HIV” process incorporates both the physical infrastructure dedicated to screening, diagnostics, and treatment, and also the significant human-resource capacity generated by the demands HIV has placed on health systems.
Perhaps the most significant contribution of tackling HIV in Africa as a rapidly emerging threat to health has been the huge body of experience that has accrued through engaging with people within their communities—examining their health-seeking behaviors, beliefs, and habits as well as their complex interactions with the formal and informal health sectors. Mistakes were inevitably made. Early health-education campaigns on the perils of HIV looked to instill fear into the susceptible populations. Health authorities utilized scare tactics and dread-laden images that succeeded only in inducing further fear among affected populations. Billboards were dominated by images of graves and skeletal patients. Some early messages were misguided altogether. I recall seeing written signs on combi-taxis (share taxis) in Soweto in 1992 that unhelpfully advised residents, “You cannot get AIDS from swimming pools.” We have, thankfully, come a long way since then. Normative standards of HIV prevention now include education and information campaigns developed with and for the target groups concerned, and people living with HIV are routinely engaged in HIV program design and performance accountability. The widespread engagement of civil society has proved crucial, providing services to the unreached, technical know-how, policy advocacy, and the essential role of witnessing the response to ensure that those in power are held accountable.
In regard to HIV care also, community engagement was a feature of some of the earliest responses. The health system had very little to offer AIDS patients for around two decades into the epidemic, until the advent of affordable antiretroviral therapy (ART). Through outreach programs that were pioneered in heavily impacted countries like Uganda, Zambia, and Zimbabwe, patients were supported by home-based care programs that forced communities to confront and tackle the disease and associated stigmas head-on. Faith-based health-care providers and civil-society organizations spearheaded these programs, which have helped countless patients, perhaps numbering in the millions, to bridge the gap between health-sector services and dignified care outside of a clinical setting.
Charges of AIDS exceptionalism have pushed a more comprehensive health agenda in recent years. Efforts to combat HIV and the funding they have received have garnered envious looks from other disease “constituencies.” From a human rights–based perspective, the charge is unjustified. Everyone, including people living with HIV and those susceptible to it, has the right to health. The achievements of the AIDS community to generate high levels of political will and subsequent resources is a major public health success story. The precedent set by the multi-institutional and -dimensional response to AIDS provides a solid platform on which to build, especially in regard to combating NCDs and their co-morbidities—which, for example, link ART administration to increasing rates of cardiovascular disease and diabetes. People living with HIV have a far higher incidence rate for NCDs. Thus the HIV service platform is the obvious place to develop further community-based NCD prevention and control interventions. Indeed, voluntary counseling and testing services established for HIV now include blood-pressure tests and screening for hypertension and diabetes across Africa, led by good pilot experiences, and have been adopted in countries like Lesotho and Uganda. Stigmas increasingly experienced by those with cancer can be addressed by the same counseling and community-engagement capacity previously devoted to HIV. Global institutions are starting to recognize the links. The Global Fund for AIDS, TB, and Malaria is opening up the possibility of financing co-infection and co-morbidity prevention and control, which could directly impact the speed and direction of scaling up tobacco-control legislation, for example, and addressing the ominous interaction of diabetes and tuberculosis.
But such advances and insights, accelerated by HIV responses, are far from universal when other pathogens enter the arena. The 2014–15 Ebola crisis in West Africa that claimed over eleven thousand lives in Sierra Leone, Liberia, and Guinea demonstrated that lessons from HIV are not yet institutionalized in emerging epidemic management. Lacking confidence in health-care providers, families hid patients, believing that clinics, hospitals, or rapidly assembled Ebola treatment units (ETUs) could provide no help or indeed would guarantee that a patient’s chances of recovery were zero. This deep level of distrust, exacerbated by misguided messaging from the health services that “Ebola has no cure,” prevented patients from being isolated in clinical centers, thus spreading the infection further in households and communities. The imperative of understanding belief systems regarding the etiology, transmission, and implicit meaning of this new infection in a naive population was recognized too late by responding agencies. In an epidemic where over half and perhaps as many as two-thirds of transmissions occurred during body preparation for burial, the scoping of the nature and extent of health-determining rituals and their variations that affect public health should be a starting point, not an afterthought. High-level orders that mandated cremation, for example, overruled community preferences for ritualized burial, and so insulted notions of spiritual travel to the afterlife. As a result, the phenomenon of “night burials” became a feature of the epidemic, spreading infection further as families sought to adhere to traditions and avoid the stigma and practical challenges of sanctioned quarantining. HIV responders taught institutions that understanding the ways that communities vary in their interpretation of and negotiation of behaviors within a belief system, and the ways they respond to disease (especially emerging ones), is a principal duty of those charged with ameliorating public health threats.
The second major lesson relates to money: who provides it matters. With so much international financing (in relative terms) being directing at combating HIV and AIDS—epitomized by the largest bilateral health interventions ever, including the US government’s President’s Emergency Plan for AIDS Relief (PEPFAR) initiative, begun in 2003, and the Global Fund to Fight AIDS, TB, and Malaria—the imperative for sustainable domestic financing of AIDS responses in the most heavily impacted countries has been slow coming. Under the narrative of “global solidarity and shared responsibility,” the international community is increasingly anxious to see HIV and AIDS responses financed by the high-burden countries themselves, starting with the middle-income countries. Lower-income countries have had a longer notice period, but the message is the same: “We can’t keep paying forever.” Countries most affected by HIV in sub-Saharan Africa are rapidly moving toward or have already reached middle-income status. Overall levels of wealth are increasing, allowing a greater flexibility of governments to increase spending on public health. Indeed, as gross national income rises, the proportion of government budget allocated to health tends to increase. We are seeing a movement of financing burden toward the taxpayers of affected countries. National AIDS levies and trust funds are starting to appear. The prototype was the AIDS levy instituted in Zimbabwe, necessitated by declines in politically conditioned aid flows from outside. Later variants, such as that in Kenya, incorporate funding meant to tackle both HIV and NCDs. Kenya is one example of health financing in transition, as nearly half of the national health budget is from development partners.
But herein lies the challenge, and the reality: economic and political capital are intertwined. A major lesson from AIDS was that national governments must own and manage the response. The search for who is to blame, combined with denial of the scale of the problem, presents crucial delays in the required response. Governance mechanisms, or the way that institutions and constituencies are convened, empowered, and interact, need to be sufficient to respond to the public health threat at hand. The emergence over time of national coordination bodies, policies, strategies, and operational frameworks dedicated to overcoming HIV was a significant achievement. Central to this success was the surge in financing—rising from several hundred thousand US dollars of international support in the mid-1990s to about $16 billion in 2014, with a projected “fast-tracking” requirement of over $30 billion from all sources by 2020. As countries transition and struggle to finance responses to existing health threats, it is no surprise that the planning, costing, resourcing, and coordination of efforts to prevent and control NCDs have barely begun. As with HIV, delays now guarantee higher impacts and greater costs later. This is one lesson that should not have to be relearned.
While there are many options for increasing financing for health, not least through revenue-raising strategies such as levies on private-sector transactions or revenue, or increasing taxes on tobacco and sugar, the issue is more complex. The transition of financing implies a transition of accountabilities for HIV responses, and along with it a reassessment of the political capital attached to HIV prevention and treatment. HIV itself, of course, does not discriminate, but since the beginning of the pandemic, and over sixty million infections later, we have seen that HIV is effective at highlighting fault lines in society, and any institutional and social prejudices. These serve to shape the epidemic at all levels and determine its trajectories. The economic and legal environments are perhaps the most significant. Failure to address these social and structural determinants of HIV serves to nurture the epidemic and its impacts at the fringes of society. Where the right to health is fragile for the majority, it can be highly precarious for those on the margins.
Respecting, protecting, and fulfilling human rights has rightly dominated the HIV and AIDS discourse and policy debate throughout. This has not been a static discussion. Over the past three decades, the framing and interpretations of AIDS have shifted. In the 1980s, AIDS in the African context was a platform for interpretations and counternarratives of racism, directed at Africa and its perceived (and externally constructed) sexualities. Imbued with colonial interpretations of sexual proclivity, early commentaries on the emerging pandemic in sub-Saharan Africa created a political backlash from within Africa itself against research and initial attempts to understand the behavioral dynamics of the condition. Indeed, the anti-Western rhetoric was strongest and most persistent in South Africa, which came to epitomize the denialism that impeded so many anti-HIV efforts and inevitably cost so many lives. Conspiracy theories regarding HIV origins and its causal links to AIDS are now almost entirely confined to the dustbin of history, and the efficacy of ARTs is proven. This fact is testified by the over fifteen million people who are benefiting directly from life-saving treatments (and countless more indirectly). Given the predominance of the medical model in treating HIV (and contributing to its prevention), the battle lines have shifted. Debate has moved from the nature of African “sexuality” in general toward the presence and rights of the LGBTI (lesbian, gay, bisexual, trans, and/or intersex) communities within Africa. Recent years have witnessed inflamed discrimination and increasing incidents of violence against LGBTI individuals and structural violence toward their communities. These incidents are not confined to the arena of HIV alone; reports of violence against gay people in Liberia during the Ebola outbreak confirm the precept that any society seeks to blame the marginalized in the midst of an epidemic. Such a stigma and its malevolence comprehensively obstruct attempts to achieve universal access to HIV prevention and treatment services, which any holistic, human rights–based response demands. The net result of the active persecution of service providers supporting sexual minorities will only strengthen the presence of the virus in LGBTI communities. In extreme situations we are witnessing active attempts to deny services to those most in need. Irrationally, one part of government is spending resources on expanding HIV services and treatments to all segments of society while another part is allocating resources to ensure that such services are beyond reach. Human rights violations, combined with wasting money, is the price of political expedience. As long as institutional discrimination continues, this will be an unfortunate but common feature, especially while HIV financing has both international and domestic dimensions.
AIDS responses also taught us that powerful tools in the fight against diseases, and in the mitigation of their impacts, lie in the hands of those beyond the health sector. A good example is the opportunity presented by the rapid acceleration of investments in programs devised to reduce extreme poverty and economic inequities. This is typified by social protection, particularly the emergence of social cash transfers in Africa. These have been demonstrated as having multiple benefits, including poverty reduction (their principle aim) as well as increased uptake of other social services—notably, education and health. Beneficiaries tend to have improved diets, better schooling outcomes, improved uptake of health services, sufficient assets for agriculture, and the maintenance of other livelihoods and savings. In the context of this discussion, cash transfers have triggered changes in sexual behavior. From trials in Malawi, Tanzania, Kenya, and South Africa, it is clear that cash transfers reduce HIV and HSV2 (herpes simplex virus type 2) transmission (by up to two-thirds in the case of HIV) and teenage pregnancy rates. The exact mechanisms through which cash mediates sexual networking and the differential impact of cash by age and gender are not yet fully understood. But the evidence indicates again that HIV is a not simply a disease of poverty, but more accurately reflects patterns of economic and social inequities.
The data derived from impact assessments of social-protection interventions that target the most vulnerable raises some important questions. First, who pays for an intervention that has demonstrable benefits for more than one sector? If impacts and their associated benefits and cost savings are spread across the health, education, and agricultural sectors, for example, who should bear the cost? Second, when resources are limited, even when the benefits are recognized and valued in economic terms, how will such a cost-sharing arrangement be determined and negotiated? Siloed financing by sector is the entrenched norm, and breaking this mold will require some political and administrative bravery. As it stands, social-protection programs are undervalued and thus underfinanced. In addition, much of the financing for social protection is in the form of international aid or loans. The capital—both economic and political, such as financing for HIV responses and health services beyond—is yet to be domesticated.
The politics of health has two distinct and interacting time frames. The medium term is that of the global development agenda, which now follows a fifteen-year pattern. We are now entering the 2016–30 cycle. The second time frame refers to national electoral cycles and the democratic terms of office that rearrange national political priorities, institutions, and personnel. The global cycle beginning in January 2016 allows us to reposition epidemic responses, with the premise that resources allocated to epidemic prevention and response ought to be determined by the political priorities as they are realigned and updated in the new Global Agenda for Sustainable Development 2030.
While the Millennium Development Goals had three out of eight goals dedicated to health, their sustainable successors—the Sustainable Development Goals (SDGs)—have only one health-specific goal: to “ensure healthy lives and promote well-being for all at all ages.” Looking across all seventeen goals, we could ascertain that achieving twenty-three targets would have direct impacts on health. The new development agenda is thus diverse, wide ranging, and all-inclusive, which creates new challenges. As we move into the 2030 Agenda period, the ambition in relation to HIV has reached the ultimate level—the ending of the AIDS epidemic (represented by Target 3.3). This technically feasible but herculean challenge, however, is one subpart of one target, among 168 other targets.
Target 3.8 requires that countries move toward universal health coverage. This means the provision, to all, of quality health services without creating financial hardship for patients or their families. Citizens should be able to demand their right to health irrespective of who they are, where they live, or what necessitates the access, and to the use of a preventive, curative, or rehabilitative service. The person is predominant in this model, not that person’s affliction. And with the person comes his or her belief system, culture, and life world. It’s a simple idea, but it could revolutionize the way health is portrayed, maintained, and managed by governments. The political discourse needs to mature from blame and discrimination to ownership and accountability. While the health landscape and burden of disease evolve, and new development commitments are made, we are running out of excuses for not keeping up.
The views expressed in this article are the author’s and do not necessarily reflect those of the United Nations Development Programme.
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UNDP. “Discussion Paper: Addressing the Social Determinants of Non-Communicable Diseases.” New York: United Nations Development Programme, 2013. www.undp.org/content/dam/undp/library/hivaids/English/Discussion_Paper_Addressing_the_Social_Determinants_of_NCDs_UNDP_2013.pdf.
UNDP. “Discussion Paper: Cash Transfers and HIV Prevention.” New York: United Nations Development Programme, 2014. www.undp.org/content/undp/en/home/librarypage/hiv-aids/discussion-paper—cash-transfers-and-hiv-prevention.html.
Webb, Douglas. HIV and AIDS in Africa. London: Pluto Press, 1997.
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DOUGLAS WEBB is a social scientist in New York with the United Nations Development Programme (UNDP), in the HIV, Health, and Development Group. Between September 2014 and February 2015 he was seconded to be Deputy Director of Essential Services within the UN Mission for the Ebola Emergency Response (UNMEER) in Ghana and Senegal. From 2008 to 2011 he was with UNICEF in Ethiopia, managing UNICEF’s response on child-focused social protection and social welfare systems development, HIV prevention, and AIDS impact mitigation. He was a member of the Joint Learning Initiative on Children and AIDS (JLICA) in 2006–8. He was the Chief of the Children and AIDS Section in the UNICEF Regional Office in Kenya (2004–8), where he developed and provided technical support to the regional program in eastern and southern Africa on orphans and vulnerable children. He was the HIV/AIDS Adviser for Save the Children UK (2000–2004) in London as well as the vice chair of the UK Consortium on AIDS and International Development. Previous appointments were to UNICEF Zambia (1995–97) and UNICEF Mozambique (1998). His doctoral thesis examined social responses to HIV and AIDS in South Africa and Namibia in contexts of political transition (University of London, 1995). He has written over fifty published articles and book chapters covering issues such as children affected by AIDS, adolescent sexual and reproductive health, HIV and AIDS, and development. He is the author of HIV and AIDS in Africa (Pluto Press, 1997) and a coeditor (with Sudhanshu Handa and Stephen Devereux) of Social Protection for Africa’s Children (Routledge, 2010).