We are just seven years away from reaching 2030 while also realizing opportunities to achieve the Sustainable Development Goals (SDGs). However, as we move temporarily towards that date, we are generally falling behind in guaranteeing many of the rights on which the goals of the 2030 Agenda are based.
The so-called neglected tropical diseases (NTDs), a nomenclature that contains much of the colonial since many of them are not even tropical, are officially recognized as targets for global action in target 3.3 of the SDGs. Hansen’s disease – commonly known as leprosy – is one of the 20 diseases classified as neglected by the World Health Organization (WHO). They disproportionately affect populations living in poverty and have devastating social and economic effects on more than 1 billion people, particularly in low-income countries and the most disadvantaged communities in middle-income countries, primarily in Africa, the Americas and Asia.
Since they mainly affect the poorest people, NTDs offer no market opportunity, so the pharmaceutical industry is not investing in products to address them. Governments contribute through tax incentives and patent protection, leaving few or no treatment options for people affected by NTDs. Affecting mostly countries in the Global South, the wealthiest seem unaware of their historical responsibility for the underdevelopment that underlies the emergence of such diseases.
But we should not focus on neglected diseases, but on neglected groups of people. Those affected by leprosy and other NTDs experience the same pattern of material deprivation, structural disadvantage, stigma, lack of access to government services and reduced participation. This is what I call submission and the need for systemic change as I try to avoid the risks of concepts like vulnerability and resilience.
Those affected by leprosy and other NTDs experience the same pattern of material deprivation, structural disadvantage, stigma, lack of access to government services, and reduced participation
Subordination refers to the historical devaluation of some groups of people under hierarchical social structures that severely limit their autonomy and participation through the manufacture and reproduction of an unequal distribution of power and resources. This hinders the achievement of goals related to NTDs and the SDGs. People affected by these diseases experience these restrictions at all levels of public dealing with their disease. For this reason, there is an urgent need to move from a disease-centric model to a human-centric model.
From a human rights perspective, they are all inalienable, indivisible, interdependent and interconnected, and all must be fulfilled on a non-discriminatory basis. Health is inseparable from the right to an adequate standard of living, which is closely related to substantive or material equality. And according to the 1986 Declaration on the Right to Development, the integral process – economic, social, cultural and political – that is called development can only take place on the basis of the active, free and meaningful participation of the individual. Likewise, international cooperation should not only relieve the beneficiary without recognizing their ability to act. But sadly, that’s still the norm for many support strategies that remain largely subservient. So how do we move towards substantive equality and systemic change?
We have the tools, like the WHO roadmap for NTDs 2030, international law and the political commitment anchored in the SDGs. We need action. One that promotes material equality through national and global redistribution policies that can guarantee a minimum standard of living for people affected by NTDs, along with universal and equitable access to public goods and services. But systemic change can only be achieved by giving affected groups a voice and being able to influence decisions that affect them. Their autonomy, active citizenship and ability to defend their interests in public affairs are key to any sustainable action. Participation means ensuring that governments, NGOs and intergovernmental organizations are held accountable.
Accountability and access to justice are essential mechanisms for guaranteeing rights. Without this, the law enshrined in books (and by analogy public health strategies and the SDGs) will not become action, i.e. a reality in people’s lives.
But if we look at participation from below, that is, from the experience of marginalized sectors, we see endless barriers. States have a responsibility to create an unconstrained society that guarantees the fundamental right of all people, and in particular of the historically most marginalized groups, to participate in public life and to defend their interests. I am afraid that as long as those affected by Hansen’s disease and other neglected diseases do not have a voice or the power to influence the formulation, implementation and evaluation of policies, achieving the goals related to NTDs and the SDGs will continue to elude us hands.
Alice Cruz She is the United Nations Special Rapporteur on the Elimination of Discrimination Against Leprosy Victims and Their Families.
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