From leprosy to COVID-19, we must eliminate double standards and put those furthest behind at centre of recovery: UN expert

World Leprosy Day

31 January 2021

GENEVA (28 January 2021) – A United Nations human rights expert said today that the response to the COVID-19 pandemic has failed persons affected by both leprosy and “double standards”. Alice Cruz, the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, made the following statement to mark World Leprosy Day on 31 January:

“We should learn from the history of leprosy. To better fight against an epidemic or a pandemic, we must eliminate discrimination and double standards for those who have been systematically left behind.

The world witnessed the massive negative impacts of COVID-19 and the crisis it generated: from deprivation of rights to family life, education, housing, employment, to domestic and sexual violence. Sadly, this is what persons affected by leprosy (also known as Hansen’s disease) have been experiencing for thousands of years. Countless persons with leprosy were isolated from societies, even though there was never evidence to back up such policies. Their children were separated from parents, and often institutionalised. And till today, they remain forgotten, without reparations or a vaccine.

Since the outbreak of COVID-19, I have been receiving numerous reports on a disproportionately negative impact on persons affected by leprosy in many countries, about which I wrote an open letter to the governments. Relevant data on the humanitarian and health crisis is not even collected or made available. In the face of the lack of responses from governments, persons affected by leprosy have been at the forefront of the emergency aid to their communities. We can surely expect rising disparities and a setback in leprosy control, transmission and prevention of disabilities, as well as in the worsening of an already extremely precarious standard of living.

These double standards in the response to the COVID-19 crisis, together with the multiple menace of mutually exacerbating problems, have been threatening the right to life of persons affected by leprosy. It is deeply disturbing that since mid-2020, persons who have been diagnosed with leprosy have not received essential drugs, (namely multidrug therapy – MDT –, which is distributed free of charge) to treat the disease, in some countries, including Brazil. According to WHO data, Brazil is the country with the highest infection rates per 100,000 inhabitants (about 28,000 new cases a year) and with a significant number of people being diagnosed with already irreversible physical impairments.

Physical impairments caused by leprosy are preventable with timely diagnosis and adequate treatment with MDT. Leprosy is curable with MDT and once treatment is started the disease can no longer be transmitted. However, double standards in institutional responses to leprosy and stigmatisation associated with the disease are a barrier to ending transmission. Shortage of MDT is aggravating both disabilities and transmission and causing great suffering.

The history of leprosy shows how costly discrimination and inequalities can be, not only to individual patients, their family members, but also to societies as a whole. Several of the violations and intersections well known by persons affected by leprosy – society’s fear, stigmatisation, isolation and its impact of mental health, segregation, gender-based violence, racism, xenophobia, among others – are being uncovered by the current pandemic. There is much to learn from the history of the struggle of persons affected by leprosy against all these forms of violence and discrimination. And the main lesson is that there is no building back better if States fail to put those left behind at the centre of recovery.”

ENDS

Ms Alice Cruz is the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. She was appointed in November 2017 by the Human Rights Council. Ms. Cruz worked as External Professor at the Law School of University Andina Simón Bolívar – Ecuador and in several Portuguese universities as researcher on health and human rights, in particular leprosy. She participated in the elaboration of WHO Guidelines for Strengthening Participation of Persons Affected by Leprosy in Leprosy Services. She has researched and written on the subject of eliminating leprosy and the stigma attached to it and has interacted with various stakeholders, including persons affected by leprosy.

The Special Rapporteurs are part of what is known as the Special Procedures of the Human Rights Council. Special Procedures, the largest body of independent experts in the UN Human Rights system, is the general name of the Council’s independent fact-finding and monitoring mechanisms that address either specific country situations or thematic issues in all parts of the world. Special Procedures experts work on a voluntary basis; they are not UN staff and do not receive a salary for their work. They are independent from any government or organization and serve in their individual capacity.

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