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 “chikungunya” and “dengue” started to buzz around me last month when I fell sick while travelling 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 I heard daily tales of people who had been struck by dengue or chikungunya, with the latter becoming increasingly prevalent.
Almost everyone I knew of infected had recovered, even if they had had to be hospitalised. But I also heard that dengue had snatched the life of a promising 20-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.
I grew outraged when I researched both dengue and chikungunya. 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
I have learned that there are more than 20 diseases, including dengue and chikungunya, that the World Health Organisation defines as Neglected Tropical Diseases (NTDs).
According to the US-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.”
WHO more diplomatically states that NTDs are “a diverse group of communicable diseases that prevail in tropical and subtropical conditions in 149 countries and affect more than one billion people and cost developing economies billions of dollars every year.”
These diseases exist because they have not been the focus of a profit-motivated pharmaceutical industry
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
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 which generally does not prioritise 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.
Poverty provides a powerful breeding ground for NTDs and 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. I realised that I was one of the lucky ones. Others are not so fortunate when it comes to NTDs, especially in marginalised 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 chikungunya, are “non-tool” ready -- in other words, there is no cure yet.
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.
And NTDs are no longer merely diseases of “the tropics.” With globalisation, trade, and climate change -- several NTDs have spread rapidly throughout the world and some have found their way into the US. 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, yet another symbol of the incredibly unequal world in which we live.
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.
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 already innovative solutions being pursued by the non-profit sector where organisations 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.
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 we want to live in?
Any vision of a stable and prosperous future demands that we resolve global inequalities and uphold the human rights of all.
Anika Rahman is a Non-profit Leader for Human Rights and Catalyst for Change. This article first appeared on Huffpost.