A Neglected and Dark Side of Africa

It is two hundred years plus since Henry Stanley labelled Africa a ‘dark continent.’ Back then, most Western explorers and missionaries were attracted to the region’s strangeness: Africa’s pristine environment was a curiosity, its inhabitants were unknown and its subsoil was treasure trove— with potential to power industrial revolutions. Today, the pejorative tag is out of fashion.  Africa is increasingly rebranding itself as a ‘rising continent.’ Yet a dark scar continues to stick on its public health map. Unlike its exotic appeal, Africa’s hidden disease burden remains a product of policy neglect— collectively affecting the lives of its bottom 500 million citizens. This is more than half of its population-- in fact, even greater than Nigeria and South Africa combine.

The World Health Organization has identified seventeen bio-medically dissimilar bacteria and parasitic infections which are linked together by their collective neglect in decision making. From a policy dimension, WHO has bundled them as Neglected Tropical Diseases (NTDs). The group of diseases has fallen off the radar of policy makers, politicians and pharmaceutical companies. Some of the diseases include leprosy, filarial, river blindness and sleeping sickness. Patients are poor, chronically sick and often disfigured. Without understanding the patterns of neglect, interventions will remain suboptimal, with sufferers trapped in a vicious web of neglect: as patients, as consumers as well as citizens. 

Silent majority

While NTDs have a global reach, for most of them, Africa bears a disproportionate burden. And for many, they affect only peoples in Africa.  NTDs are as old as biblical times, debilitating over a billion of the world’s population.

Yet a combination of insufficient interests and weak systems for delivering healthcarey continue to relegate Africa’s major cause of disabilities and even deaths into neglect. It was only six years ago, that the first global report on the collective status of the diseases was released by WHO.  Even then, attention still pales in comparison to other diseases. Compare with diseases linked to affluence and lifestyle, there is a dearth of knowledge about NTDs. Research is chronically scarce. For most patients, there is an empty pipeline of new drugs, vaccines and diagnostics. This is a mark contrast with the rate of innovation in the pharmaceutical industry. And even for current regimens, treatment tools are cumbersome and often dangerous. For example, the WHO notes that the equipment use to administer a daily dose of eflornithine, a pill against sleeping sickness, weighs around twenty kilograms— almost half a bag of cement and cost about $612— almost twenty times the money spend on health by African governments per citizen.

Funding for these diseases is chronically low as well as misaligned with their disproportionate share of the global disease burden. According to one estimate, only 0.6 percent of annual health funding is devoted to fight NTDs as compared to 36.3 percent on HIV/AIDS. This contrasts with  evidence showing that in terms of life lost from disability, NTDs as group, approximates two third of the burden of HIV/AIDS

Penniless consumers

Neglected as patients, sufferers are dis-empowered as consumers, with little or no freedom to participate in the pharmaceutical market.  Markets for new drugs, vaccines or diagnostics have either failed, dysfunctional or missing.  As a result of poverty, and scattered nature of sufferers, they are not viable enough as a group, to create a profitable consumer base for pharmaceutical companies to invest— in new processes and products to effectively tackle NTDs.

Research and development for most NTDs continue to stagnate, to say the least, or has barely progressed since colonial period. Discovery of most of the current pool of ingredients for making drugs was motivated by self-interests of explorers and settlers to overcome the disease ridden environment of the Dark Continent during the colonial period.  As western interests drifted away from the continent after independence, support for NTDs faded too. No longer did they pose immediate security risks. These diseases don’t cross borders easily or spread quickly like Ebola. In fact, they are self-contained in Africa and as such continue to fall in the cracks of global health priorities. According to one study, of the 1393 new chemical entities introduced between 1975 and 1999, only 16 targeted NTDs. In contrast, the same study, points at the 13 fold greater chance of a drug being brought to the  market for cancer or central nervous system disorder compared to almost nil for NTDs.

Marginalized citizens

Neglected as patients, disempowered as consumers, NTDs sufferers are left with default right as citizens. Yet African leaders, more than five decades after independence, unfortunately continue to walk down the same path of neglect, disenfranchising a significant majority of their citizens. Often vulnerable members of society, living mostly in remote and rural areas, NTDs sufferers often are abandoned by politics and policies. Disproportionately affecting women and children as well as poor men, sufferers have little or no voice to influence politicians and policy makers to prioritize critical unmet public health needs. Hook worm infection, as an example, contributes to approximately seven percent of maternal deaths in Africa through anemia.   Schistosomiasis affects an estimated ten million pregnant women in Africa alone, half of whom consequently develop anemia during pregnancy— resulting to increased maternal morbidity, low birth weight and other adverse outcomes.

And even when treatment is readily available and affordable, culture may further reinforce exclusion and marginalization.  While health system bottlenecks may hinder access to care, studies show that social stigmas associated with NTDs may further prevent patients from accessing basic information early enough, as well as staying on treatment regimens until completion. Yet policy and decision makers, by omission as well as commission, mirror societal stigmas— relegating sufferers into oblivion. As neglected patients, sufferers face barriers to exercise their constitutional right as citizens, capable of holding their governments into account for their marginalization through leveraging the power of their collective votes. Sufferers remain dispersed in remote areas, hidden and unorganized for politicians to care about their health needs.

NTDs fortunately can be prevented as well as treated and cured by basic public health interventions and drugs. While the policy-oriented label of neglected has mobilized greater global attention and resources over the last couple of years to these diseases, an even greater focus is needed to address the 'causes of their cause' as well as underlying structure of neglect. Getting politics and economics right matter. Perhaps on the same scale or even more than unpacking key bottlenecks of epidemiological, clinical and health systems dimensions for eliminating the diseases.

Without addressing the structural determinants, specifically the political economy of neglect, current disease-specific approaches will remain suboptimal at best. In the worst case, they may even continue to perpetuate the vicious cycle of neglect for millions of African peoples. This remains unforgivable and avoidable as a tragedy, overwhelming and inequitable in proportion.