A/HRC/19/73 to be perceived as a curse, “coming from the devil” and, ultimately, shame on the family. The social stigma attached to noma pushes families to sometimes hide away or isolate their children with animals, instead of seeking health care.129 The chances of these children being treated early on and recovering are thus further minimized. Given the high death rate, hiding children with noma away virtually gives them a death sentence. If they survive, hidden children with noma are also left out from any statistics on the disease. It is thus the urgent and imperative human rights obligation of authorities to dispel the myths about noma and provide information to health workers and parents on how to identify and treat noma. Foremost, the right to life of these children must be protected, in addition to the right to adequate and timely health care and to non-discrimination. 58. Survivors of noma are condemned to a life marred by discrimination. While trying to hide away their mutilated face, they are often condemned to a life in poverty, unable – either because of the disease or society – to access education, a decent work place or adequate housing. Victims of noma are similar to victims of leprosy, shunned and rejected by their communities.130 Reconstructive surgery would thus be a rare chance for the survivors to live without discrimination. Dedicated individuals and NGOs are almost the only actors in that field and often perform reconstructive surgery without payment during their free time (see next section). Yet many NGOs reported encountering bureaucratic hurdles and corruption, which are thus affecting the already poor chances of the most vulnerable to a decent life and livelihood. 59. The neglect of the noma disease itself has far-reaching consequences. It is a major impediment in the context of determining incidence and assuring the surveillance of noma.131 To overcome the difficulties of epidemiological surveillance, the WHO Regional Office in Africa is planning to work jointly with the WHO Neglected Tropical Diseases Programme.132 This cooperation may indeed be an indication of a wider acknowledgement that noma is a neglected disease and it should, as a consequence, formally be granted the status of a neglected disease. 60. The neglect of this disease has enormous implications for the needed timely treatment to children with acute noma and later reconstructive surgery. For example, Dr. Srour argues that only a few doctors in Asia are aware of noma and that probably they would not recognize it because it has rarely been described as a disease present on the Asian continent.133 Providing information about and training on noma in Asia and beyond falls to the responsibility of every State, while the leadership must be assured by WHO. Experts in the field have, however, reported that noma is neglected or outright ignored by political authorities, which perpetuates the vicious circle of neglect of the disease itself and the discrimination of those affected by noma. It would thus not be far-fetched to describe children with noma as representing a group of neglected victims. 61. Despite having an associate mortality rate comparable to diseases such as multiple sclerosis and appendicitis, noma does not appear in the annual WHO global reports.134 Moreover, noma is not listed among the major killers like malaria, diarrheal diseases, HIVinfection/AIDS, measles, tuberculosis, and severe chronic malnutrition; however it is a 129 130 131 132 133 134 Bourgeois, “WHO initiative on noma”, p. 173; Baratti-Mayer, “Noma: an „infectious‟ disease”, p. 421; J.E. Tonna et al., “A Case and Review of Noma”, Neglected Tropical Diseases, vol. 4, No. 12, December 2010. Noma: The Face of Poverty, The International Noma Day, 2008.Available from www.nonoma.org/doc_pdf/world_noma_day_anglais.pdf. Bourgeois, “WHO initiative on noma”, pp. 172–173. Communication of J. Ziegler and I. Cismas with Dr. B.Varenne. Srour, “Noma in Laos”, p. 540. Fieger, “An estimation”, p. 405. 19