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Statements Office of the High Commissioner for Human Rights

Inclusive and rights-based approach to leprosy needed, says Türk

21 June 2023

At

Bergen International Conference on Hansen's disease

Video Message by Volker Türk, UN High Commissioner for Human Rights

21-22 June 2023

Thank you for the invitation to address you.

As we mark 150 years since Dr. Gerhard Amauer Hansen discovered the cause of leprosy, we celebrate the medical innovations that have occurred since then to treat the disease.

But when leprosy was eliminated as a global public health problem in 2000, it did not mean that the disease disappeared.

Over 250,000 people suffer from leprosy every year. 15,000 of them are children. The actual figures are likely far higher.

Around 3-4 million people who have already been cured still bear varying degrees of impairment.

And the burden of leprosy is heaviest in countries with the greatest inequality, poverty, and marginalisation.

Leprosy is a health concern, but it is also a human rights concern.

For centuries, people affected by leprosy have suffered systematic isolation and discrimination.

They have been forced to live in decrepit institutions, shunned and stigmatised.

They have been excluded from the formal economy and denied education and essential services – pushing them into poverty.

To better the lives of those impacted by leprosy, we need to address the physical symptoms, but we also need social and behavioural measures to address stigma and discrimination.

We need comprehensive strategies, with access to quality care, education, and social protection.

Given the physical impairments that are caused by leprosy, affected people should be fully recognised as persons with disabilities.

This will encourage States to protect, promote, and fulfil their rights and those of their family members, including by ensuring they can participate in policymaking.

We also need to support their inclusion and participation in community life, by breaking down the social stigma attached to leprosy and taking measures to address harmful traditional practices.

We need stronger legal and policy frameworks that protect their rights, promote equality and counter discrimination.

We need to protect affected people who have multiple marginalised identities. We need to reduce the stigma and discrimination that prevent people from seeking health services for leprosy.

And early diagnosis is crucial, in order to prevent impairment, and to avoid the massive human rights fallout of the disease.

Together, we can make a real difference in ending leprosy, which causes immense, preventable and unjustifiable suffering for thousands of people.

I acknowledge the excellent work of the Special Rapporteur on discrimination against persons with leprosy, Alice Cruz, who has helped to shine a much-needed light on the enormous human rights burden of this disease, as well as the work of all relevant UN human rights bodies.

My Office welcomes the efforts of all actors who are striving to end leprosy and its devastating social consequences. We will continue to work with our partners to promote the highest attainable standards of health for every human being.

Let’s build an inclusive and rights-based approach to leprosy – one that values and respects the dignity of those suffering.