NEGLECTED “TROPICAL” DISEASES: A SYMPTOM OF PROFOUND GLOBAL INEQUALITY

Chikungunya. Chagas. Onchocerciasis. Schistosmiasis. Leishmaniasis.

A list of big words, each difficult to pronounce. Before last month, I had not even heard of any of them. If I had somehow come across any one of these words in New York, I might have thought that they refer to some new “exotic” food or plant. Instead, I now know that these words describe diseases that represent pain, disability, illness and, sometimes, death.

And I learned this first hand.

The words “chickungunya” and “dengue” started to buzz around me last month when I fell sick while traveling to Bangladesh. I had heard of dengue fever because my mother had once had it. But what was chikungunya? I soon learned that both dengue and chikungunya are viruses borne by the same mosquito — a mosquito that also transmits the Zika virus. Apparently, these mosquito-borne viruses were common enough in Dhaka that almost everyone I knew had a relative, friend, or co-worker who had been infected. I heard daily tales of people who had been struck by dengue or chickungunya, with the latter becoming increasingly prevalent. Almost everyone I knew of had recovered even if they had had to be hospitalized. But I also heard that dengue had snatched the life of a promising twenty-year-old son of an acquaintance.

During the course of my illness, I learned that while a dengue blood test was available at several major labs in Dhaka, the capital city of Bangladesh, the chikungunya test was currently available on a limited basis at only one lab. Why?

Although I am now fortunate enough to be recovering from dengue, I grew outraged when I researched both dengue and chickungunya. As a professional who has devoted her career to issues of human rights and justice, I am acutely sensitive to inequality, injustice, and discrimination. I now appeared to have just stumbled into a huge global inequality merely because I had been bitten by an infected mosquito.

A Voyage of Discovery: What are “Neglected Tropical Diseases”?

I have learned that there more than twenty diseases, including dengue and chickungunya, that the World Health Organization defines as a Neglected Tropical Diseases (NTDs). According to the U.S.-based National Institute of Allergy and Infection Diseases, NTDs are considered “neglected” because they “generally afflict the world’s poor and historically have not received as much attention as other diseases.” The World Health Organization more diplomatically states that NTD are “a diverse group of communicable diseases that prevail in tropical and subtropical conditions in 149 countries — [and that] affect more than one billion people [emphasis added] and cost developing economies billions of dollars every year.” Not surprisingly, NTDs have a disparate impact on the most vulnerable parts of the world’s population and affect more than half a billion children around the globe. As a continent, Africa appears to be the most affected by multiple NTDs.

The list of NTDs includes not only the ones I have mentioned here, but also others that are better known such as guinea worm disease, river blindness, rabies, and sleeping sickness. The most deadly NTD is schistosomiasis, also known as “snail fever,” a parasitic disease carried by fresh water snails. Shockingly, it affects more than 200 million people worldwide.

The Inequality Lens and Neglected Tropical Diseases

NTDs, almost by definition, exist on a huge global scale because the people who generally suffer from them are amongst the world’s poorest. These diseases are not “neglected” because they are unknown, uncommon or yet to be discovered. No, these diseases exist and are becoming more common because they have not been the focus of a profit-motivated pharmaceutical industry that is generally not prioritizing the diseases of the poor. In short, they are without exception embedded in a range of economic and social inequalities.

Although of course mosquitoes and other parasites can infect people irrespective of class, gender, caste, race, and age, the sad reality is that the probability of being infected as well as the ability to be cured is highly dependent on socio-economic status. Women and other economically vulnerable communities are at much higher risk of NTDs because they live in higher risk areas with unclean water, open sewer systems, and stagnant water, and often need to engage in activities — such as carrying water and preparing food — that increase the chances of being infected. Indeed, poverty provides a powerful breeding ground for NTDs.

Yet still more inequalities are embedded within the acquisition and treatment of NTDs.

First, it was my own experience with dengue that made me aware that testing and diagnosis is the most critical step in addressing the problem. Even though it took almost the entire day for me to receive my blood test results for dengue and chikungunya, I realized that I was one of the lucky ones. Others are not so fortunate when it comes to NTDs, especially in marginalized communities.

The extra whammy for economically vulnerable communities occurs because they also have less access to health care. Timely testing and diagnosis, even if available, are likely to be unaffordable for such communities. Conversely, the more affluent will be able to act swiftly to address the situation. However, even a person who might be able to afford a reasonable level of care may not be able to find a cure or be treated in a timely manner. This is because some NTDs, like dengue and chickungunya, are “non-tool” ready — in other words, there is no cure as yet.

In addition, knowledge and information about NTDs are not available equally in the world and, maddeningly, not even in the countries most impacted. While I was sick in Bangladesh, I simply didn’t hear about a vaccine for dengue fever. However, my later research indicated that in late 2015 and early 2016, Sanofi Pasteur registered the first dengue vaccine, Dengvaxia, in several countries for use in individuals 9–45 years of age living in endemic areas. Moreover, since NTDs are obviously a public health problem, much more needs to be done to educate people on how to avoid specific NTDs.

At the same time, NTDs are no longer merely diseases of “the tropics.” With globalization, trade, and climate change, several NTDs have spread rapidly throughout the world. NTDs such as dengue, West Nile virus and Chagas have found their way into the U.S., particularly in those regions characterized by high rates of poverty. These diseases are only likely to increase worldwide.

Perhaps it’s best to rename Neglected Tropical Diseases as Global Neglected Diseases — diseases neglected because they generally afflict the world’s poor. Such illnesses are yet another symbol of the incredibly unequal world in which we live.

Seeking Solutions: Collaborations Not Solely Motivated By Profit

How do we address such a massive problem? How do we find cures? How do we diagnose and treat these diseases in way that a patient can afford? Clearly, relying solely on profit-seeking pharmaceutical companies to undertake all the research and development required to test and cure this range of global diseases is not the answer.

Solutions to such complex global problem are extremely complicated. There appears to be little doubt that finding cures to NTDs will require a move away from profits as a sole incentive for treatment and drug development to a paradigm wherein there is collaboration between different sectors, and governments provide funding.

On the positive side, there are also innovative solutions now being pursued by the non-profit sector where organizations are proving that new drugs don’t have to cost a fortune. An excellent example of a non-profit/NGO success story is DNDi. In a short period of time, this NGO has garnered approval for drugs to fight malaria, Chagas, and sleeping sickness as well as one form of leishmaniasis, and it is working on other drugs too. DNDi has developed these drugs at one quarter of what a pharmaceutical company would spend because its model for success is known as Product Development Partnership (PDP). PDPs collaborate with governments, universities, and private corporations to cure diseases in which most for-profit pharmaceuticals are not involved.

Affordable and accessible health care is important everywhere, and we live in a world where “diseases of poverty” are becoming increasingly common. But is this the kind of world in which we want to live? Any vision of a stable and prosperous future demands that we resolve global inequalities and uphold the human rights of all.

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