We interview Alice Cruz, UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.
Alice Cruz is a doctor of sociology and works to ensure that persons affected by leprosy and their families do not suffer discrimination and stigma. She has dedicated a significant part of her professional career to giving these people a voice. Of Portuguese nationality, she has wide experience in Portugal, Brazil, South Africa, Bolivia, and Ecuador, working with organizations that combat leprosy.
After being a Board member of the International Leprosy Association between 2014 and 2016, she is currently the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. We have spoken to her about the future challenges for a more effective fight against skin NTDs.
At Fundación Anesvad we are reflecting on our 2023-2026 strategy for fighting NTDs, in alignment with the road map laid out by the WHO. In your experience, what are the most important cross-cutting themes that should be taken into account in the fight against NTDs?
There are many social, cultural, and economic factors that affect the problem of NTDs. In order to tackle them in integrated manner I believe that it is important to have a framework based on rights. For example, water and sanitation, environmental questions, universal access to healthcare, equality, and poverty all form part of a broad category of social determinants for health, but they also coincide with many economic and social rights that depend on political decisions. It is the same for disability, matters of gender, stigmatization and discrimination, which are related to the right to non-discrimination. This right is established in various international human-rights instruments, but also in specific instruments created to protect vulnerable groups such as children, women, disabled persons, or victims of racial discrimination.
“People affected by NTDs should not be considered merely as passive beneficiaries or patients.” Alice Cruz
All of these matters must be taken into account and tackled if we want to beat NTDs. They all cover many of the duties of the State in accordance with their national constitutions (the majority of national constitutions recognize health as a right), national laws, but also in accordance with the international obligations of the States in matters of human rights. Furthermore, there are the people affected by NTDs. They should not be considered merely as passive beneficiaries or patients. They are the holders of rights, and ought to be able to exercise them and demand that they are respected. The right to participation is also key for this to happen.
It is precisely because all of these matters are important that I suggest grouping them and other matters into general categories so as to ensure more efficient and effective action when it comes to carrying out interventions to combat NTDs.
When you refer to people’s right to participation, what is the importance of this in the effective fight against NTDs?
Participation must be guaranteed in all public matters relating to people’s lives, including the creation of policies, monitoring and assessment; participation is also related to other matters such as empowerment, leadership, the creation of networks, self-organization and self-determination, all of which are fundamental for policies and strategies that are focussed on people. In the case of NTDs, the promotion of the Right to Health must be carried out for the most part by persons affected by these neglected diseases, and the role of non-profit organizations should be to support the self-organization of the affected persons, both technically and financially.
What is the best way to integrate these cross-cutting themes into the fight against NTDs?
The answer to this question depends to a large degree on who is applying these cross-cutting strategies. But also on the scale of the intervention (local or national). If they are implemented by the government at a national level, accountability is essential, from the ministries to the civil servants working on the ground. It is not realistic to suppose that the ministry of health is going to apply these cross-cutting interventions on its own. Multi-sectoral action is the key to that outcome. But in order for this to be effective it is necessary to clearly define who does what and who is responsible for what.
National strategies also need to be faithful to local realities. Pilot interventions need to be carried out at a community level to support the creation of policies at ground level. The said pilot interventions should have participation at their core. As I have said, community participation is a well-documented key strategy. For sure, to simultaneously prevent and respond to NTD outbreaks in an equitable, appropriate, and efficient way.
Communities, organizations, civil-society groups, schools, the traditional non-state justice systems and their operators, traditional healers, groups of persons affected by NTDs, and women (who are key to ensuring the health of families and communities) should participate in full. It is necessary to establish a clear communication channel between the various levels and actors. Also to always guarantee accessibility, not just with regard to physical infrastructure, but also to language, culture, gender, and age. Lastly, the basic principles of human rights, such as non-discrimination, dignity, equality, participation, and responsibility, must be respected, protected, and promoted always in all interventions and actions.
What would you say are the main gaps in the way in which these aspects or questions are currently tackled?
Public health policies, both worldwide and national, continue to focus on disease. Strategies are developed to tackle disease, focussing on the individual body and ignoring knowledge capable of tackling both the psycho-social dimension of the human being or the collective dimension of health and disease. Furthermore, the economic, social, cultural, political, and psychological dimensions of NTDs are still scarcely explored by research and in the formation of policies.
Therefore, I would say that one of the main gaps is connected with knowledge, but also with the fact that the knowledge one appears to have is one that reaffirms verticality, the formulation of policies top-down, the pharmacopoeia of public health and a very narrow view of health and wellbeing. Health is still viewed as a sectoral matter, when in truth health covers and is related to all dimensions of collective and individual life. As Rudolph Virchow said, ‘medicine is a social science and politics is just medicine on a large scale’.
“Whereas the right to work, the right to education, or the right to social protection are equally important to guarantee substantive equality.” Alice Cruz
Sadly, world and domestic health policies still do not take seriously the idea of health as a human right inseparable from the right to an adequate standard of living. Another important gap is to do with research and the lack of funding for research into NTDs, which is related to the marketization of health and lack of interest in NTDs by the major pharmaceutical companies.
Lastly, there are gaps in the way certain questions are tackled. Social determinants seem to be limited to the WASH strategy (water, sanitation, and hygiene). Whereas the right to work, the right to education, or the right to social protection are equally important to guarantee substantive equality. Stigma and discrimination are considered to be the consequences of disease. Whereas in fact they can also be the causes and they ought to be firmly recognized as social determinants for health and disease. Appeals are made to multi-sectoral action as a broad consensus, but there are no proper studies or guidance regarding how to really apply it. Lastly, a major gap, in my opinion, is not taking into account the different levels of the State authorities and continuing to focus solely on central government.