Forgotten People, Forgotten Diseases. Peter J. Hotez
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worker productivity in Africa, Asia, and the Americas. Similarly, LF has a huge impact on productive capacity and costs a significant percentage of India’s gross national product, trachoma causes $5.3 billion in worldwide losses annually, and leishmaniasis is responsible for 0.43% of French Guiana’s social security budget.9 We are only beginning to understand the full economic impact of the NTDs, but these nascent studies indicate that the effects are likely to be profound.
However, even a full consideration of the enormous disability, disfigurement, and economic impact does not adequately convey the total devastation wrought by the NTDs. In an interview with a Sri Lankan LF-affected patient suffering from a severe limb deformity, we can get a palpable sense of the enormous shame and stigma from the limb or genital deformities caused by her disease and how they in turn promote an inexorable slide into poverty.10
I got this big leg when I was engaged to be married. When they heard it was filarial, they backed out of the marriage. I was earning Rs 2,500 (US$25) a month from sewing, but when the leg got worse, the hospital doctor told me I should not pedal the machine. So I lost my income as well. When my parents died and my sister got married, only my brother and I lived in the house. My brother married and left the house, but my sister become widowed so came to live with me and her child. She had no money to buy a bandage as instructed by the clinic. So I went to a house to cook. When they saw my leg, they asked me not to come there anymore and found fault with me for hiding such a dirty illness from them. When I get fever, I cannot walk to the hospital, so I take paracetamol for 2 days and walk to the hospital when I feel less pain.
According to the Sri Lankan health care team investigating such cases of LF, the woman in this vignette, who previously lived on earnings of approximately US$1 per day, lost even this meager income and became totally dependent on her brother-in-law.10 An important theme in the succeeding chapters is how stigma actually contributes to the morbidity of the NTDs and creates not only a medical crisis for the affected individual but also a tragic cycle of social and economic devastation for both the individual and his family. According to Swiss Tropical and Public Health Institute’s Mitchell Weiss, the stigma of the NTDs contributes to suffering, delays the seeking of help, promotes nonadherence to treatment, negatively affects families and communities, and ultimately lessens support for services, control, and research.11 Later, we will even see how, with some of the NTDs such as leishmaniasis, the stigma is particularly acute for young women, often leading to their verbal and physical abuse (in chapter 7), or how the stigma associated with Buruli ulcer is linked to beliefs about witchcraft (in chapter 6).
In summary, the health impact of the NTDs reflects their chronic and disabling features. But there are also educational and socioeconomic consequences that may even be greater. Neglect occurs at many different levels: at the community level because the NTDs arouse fear and inflict stigmas, at the national level because the NTDs occur in remote and rural areas and are often a low priority for health ministers, and at the international level because they are not perceived as global health threats equivalent to the high-mortality big three conditions.12 Paul Hunt, the UN Special Rapporteur on the right to the highest attainable standard of health, points out that relief from the suffering caused by the NTDs is a fundamental human right, which unfortunately has been largely ignored.13 Despite their global importance, we so far have no Bono equivalent to champion the plight of the 1 billion of the world’s poorest people who suffer from NTDs, and the total dollars thus far committed to NTD control are currently measured in the millions, not the billions.
Fortunately, this picture of neglect may one day turn an important corner, in part because of a new resolve by the WHO and national ministries of health, together with several key public-private partnerships dedicated to NTD control. Further, many of the organizations involved in NTD control have begun to partner through a new alliance known as the Global Network for Neglected Tropical Diseases (discussed in chapter 10).14 The Global Network is working to mobilize resources for the NTDs and to promote high-level advocacy from global leaders and celebrities. These activities include a new awareness campaign known as END7 to end seven of the most common NTDs.15 At the same time, student groups are beginning to voice their concerns about the urgency of addressing the NTDs.15 These important, nascent efforts are about to lead to a modest revolution in global health and to make a huge impact on the world’s poorest people.
Summary Points: Introduction to the Neglected Tropical Diseases
The NTDs are among the most common infections of the world’s poorest people, those living on less than US$1.25 per day.
Nonemerging, ancient conditions
Chronic and disabling features
High morbidity, low mortality
DALYs almost equivalent to those for HIV/AIDS, malaria, and tuberculosis
Coendemicity of the NTDs and with HIV/AIDS and malaria
The “gang of four”
Poverty-promoting features that keep populations destitute
Associated with profound stigma
Urgent need for stepped-up advocacy and resource mobilization
Notes
1. The designation of HIV/AIDS as the “plague of the 21st century” is found in Skolnik 2007, p. 191. The definition of “manifesto” is from Agnes, 2000, p. 874.
2. Further details on funded programs for HIV/AIDS and malaria and their relationship to the neglected tropical diseases are found in Hotez, 2011; and Hotez et al., 2011.
3. The original core list of 13 NTDs was shaped and refined by Molyneux et al., 2005; Hotez et al., 2006a; and Hotez et al., 2007. The WHO’s list of 17 NTDs was first reported in World Health Organization, 2010.
4. The numbers of people infected with NTDs are found in or modified from a number of sources, including Hotez et al., 2007; Hotez, 2012; Bethony et al., 2006; Furst et al., 2012; Nash and Garcia, 2011; Rajshekhar et al., 2003; Budke et al., 2006; and www.who.int/blindness/causes/priority/en/index2.html. These numbers continually require updating based on new studies and control measures.
5. Further details regarding