By Joseph J. Amon and David G. Addiss
On a hot, humid summer evening in Haiti many years ago, a young woman sought care for her swollen leg. Scientists from the U.S. Centers for Disease Control and Prevention (CDC) tested her blood for the presumed cause of the swelling – a parasitic disease known as lymphatic filariasis (LF) – and offered her medicine to treat the infection. The CDC doctor was stunned by what happened next: the woman, gazing steadily at him, held the tablets high in her hand, threw them on the floor, and, without a word, marched out of the room.1
This young woman was teaching the CDC scientists a lesson that they were not quite ready to hear: while their medicine would treat the woman’s infection, and potentially protect others from becoming infected, it would not reverse the damage to her leg. It would not address the stigma and shame that she experienced because of the swelling. It would not protect her from the other diseases of poverty to which she was susceptible, or ensure her access to health care for all of her health needs, or even guarantee she would be free from reinfection in the future.
LF is but one of 20 diseases of poverty – together known as neglected tropical diseases (NTDs) – that are targeted for control or elimination by the World Health Organization (WHO). Spectacular progress has been made since global health leaders met in London in 2012 to express their commitment to these targets. In 2016 alone, NTD drugs donated by pharmaceutical companies were used to treat more than one billion people. For some NTD infections – LF among them – interruption of transmission is tantalizingly close in many countries.2
But this very success shines a light – or casts a shadow – on the persistent, and unaddressed, NTD-related challenges that one billion drug doses can’t address. Linked to LF infection are disability and mental health problems, stigma, poverty, and social exclusion of affected persons. Both as causes and consequences of NTDs, these challenges are viewed as falling largely outside the purview of NTD programs. By creating NTD programs with a narrow focus on infections, we have designed an NTD elimination strategy that can “succeed” while doing little to relieve current suffering or strengthen health systems.
It is understandable why a narrow approach appeals to some donors and ministries of health. NTD drugs such as ivermectin, albendazole, and azithromycin really do seem like “magic bullets.” Because of their use in NTD programs, hundreds of millions of people are no longer at risk of disease. This is an amazing accomplishment and ranks among the great achievements of modern public health.
But much more is possible. To realize the ambitious vision of the Sustainable Development Goals (SDGs) to “leave no one behind,” NTD programs should commit to caregiving for affected persons in addition to engaging in a battle against infectious organisms. This will require new ways of thinking and closer collaboration with other parts of the health system. It will also require a human rights approach that addresses the broader issues of stigma and exclusion. The leprosy community has long adopted this approach. The UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, Ms. Alice Cruz, is working with colleagues around the world to dismantle laws and policies that discriminate against persons affected by leprosy, even after being cured of the infection.3
To be sure, tensions can arise between public health approaches, which often prioritize expediency and “easy wins,” and rights-based approaches, which emphasize equity and respect for human rights. But, as the opening example from Haiti reminds us, if individuals and communities are not deeply engaged and listened to, our public health programs will falter. As NTD elimination programs begin to focus on the last remaining pockets of infection – often in “hard to reach” areas of conflict or among migrant populations or mobile communities – we will need even greater commitments to community engagement and respect for human rights.
Bringing a human rights approach into the fight against NTDs will require that the NTD community – smart, dedicated, tireless individuals working to achieve an inspiring goal – learn a new vocabulary and new strategies. A recent special issue of the Health and Human Rights Journal highlights the benefits and challenges of incorporating human rights approaches into NTD programs. The articles describe the positive implications of the Dominican Republic’s LF program for human rights;4 discrimination and social exclusion of people with LF in Plateau State, Nigeria;5 and human rights violations associated with podoconiosis in Ethiopia.6 The issue also includes an overview that provides a roadmap for incorporating human rights into NTD programs.7
The silent, but eloquent, rejection of the medicine provided to the young woman in Haiti illustrates the risk for NTD programs that remain too narrowly focused on parasites rather than people. As the former UN Special Rapporteur on the right to health, Paul Hunt, noted more than a decade ago, if fully deployed, human rights can help NTD programs – and the governments that run them – deliver on their fundamental promise of health equity and more effectively advance their unfinished “pro-poor” agenda.8 This agenda has served as the fundamental motivation for global efforts to address NTDs. Now is the time to look beyond elimination of infection and incorporate within NTD programs greater attention to stigma and discrimination, strengthened health systems, and support for those suffering from the consequences of NTDs.
Joseph J. Amon, PhD, MSPH, is Vice President for Neglected Tropical Diseases at Helen Keller International. David G. Addiss, MD, MPH, is Director of the Focus Area for Compassion and Ethics at the Task Force for Global Health.
- Addiss DG. When the student is ready, the teacher appears. In Rotbart H, ed. Miracles we have seen: America’s leading physicians share stories they can’t forget. Deerfield Beach, Florida: HCI Books 2016; 190-197.
- World Health Organization, “Global programme to eliminate lymphatic filariasis: Progress report, 2016,” Weekly Epidemiological Record 2017; 92/40: 589–608.
- Cruz A. Report of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. United Nations Human Rights Council. Thirty-eighth session, 18 June–6 July 2018, Agenda item 3. Accessed at http://zeroleprosy.org/wp-content/uploads/2018/06/Special-Rapporteur-First-Report.pdf.
- Keys H, Gonzales M, Beau De Rochars M, Blount S, Noland GS. Building trust through lymphatic filariasis elimination: A platform to address social exclusion and human rights in the Dominican Republic. Health Human Rights J. 2018; 20(1): 41-52.
- Abdulmalik A, Nwefoh E, Obindo J, Dakwak S, Ayobola M, Umaru J, Samuel E, Ogoshi C, Eaton J. Emotional difficulties and experiences of stigma among persons with lymphatic filariasis in Plateau State, Nigeria. Health Human Rights J. 2018; 20(1): 27-40.
- Shahvisi A, Meskele E, Davey G. A Human Right to Shoes? Establishing rights and duties in the prevention and treatment of podoconiosis. Health Human Rights J. 2018; 20(1): 53-65.
- Sun N, Amon JJ. Addressing inequity: Neglected tropical diseases and human rights. Health Human Rights J. 2018; 20(1): 11-25.
- Hunt, R. J. Bueno de Mesquita, and L. Oldring, “Neglected diseases: A human rights analysis,” Special Topics in Social, Economic and Behavioural Research No. 6 (Geneva: World Health Organization, 2007). Accessed at http://apps.who.int/iris/bitstream/handle/10665/43696/9789241563420_eng.pdf?sequence=1&isAllowed=y.
Focus Area for Compassion and Ethics