Ending the stigma and persistence of leprosy requires governments to step up
On World Leprosy Day, organizations across the world must come together to raise awareness and work towards the implementation of concrete goals to end discrimination around leprosy.
Elton (alias) was born in 1980 in Rio de Janeiro. He was born in a favela, without access to education or to the formal labor market, and he had to depend on manual labor jobs. Despite increasing symptoms, he was treated only for a regular skin dieases and waited years for a leprosy diagnosis, causing him irreversible damages. After his diagnosis, he was clinically “cured”, but his reactions persisted and retained him in a never-ending cycle of treatment. Unable to work as a locksmith because of nerve damage, and suffering discrimination from his community because pain and physical weakness prevented him from fitting the male stereotype, he applied for disability benefits. Without visible sequelae (the lesions associated with leprosy), his claim was denied. Stigmatized in his community and abandoned by the state, Elton ended up stealing to survive; he was then arrested and contracted tuberculosis in prison.
Despite being considered a disease of the past, this chain of social and institutional discrimination took place in the first decade of the 21st century. Leprosy or Hansen’s disease (or Hanseniasis, as registered in Brazil in 1975) is a contemporary reality closely associated with socioeconomic and political vulnerabilities. It is an infectious disease caused by the bacillus Mycobacterium leprae that affects mainly the peripheral nerves and the skin. Most people in contact with the disease do not develop it, because transmission depends on both and biological and social circumstances—such as immunological responses and prolonged close contact, among other issues—which often result from the violation of the rights to housing, sanitation, and others.
While we celebrate World Leprosy Day, we must understand the impact is has had globally and the many people who have suffered from its social implications and lack of medical resources.
The treatment for Hansen’s disease is multi-drug therapy (MDT) and the risks of developing sequelae are related to how early it is diagnosed; some people experience reactions that can lead to irreversible damage. Because it is a neglected disease, the only available drugs for Hansen’s disease reactions are corticoids and thalidomide, which cause several adverse effects. Therefore, the most effective cure depends on an early diagnosis—essentially the right to a functional health system—and on the government’s duty to respect, protect and fulfill this right.
In 2016, 214,783 new cases were reported globally; 12,437 were late diagnoses with severe disabilities, among which 281 were children. The countries with the highest absolute number of cases are India, Brazil, and Indonesia, but Hansen’s disease follows human migration and it has been increasingly found in countries where it had already been eradicated.
In 2016, discriminatory laws against affected people in nine countries were reported to the World Health Organization. However, a study led by the ILEP—International Federation of Anti-Leprosy Associations—found discriminatory laws in more than twenty countries, encompassing issues of segregation, migration, marriage, voting rights, public transportation, employment, and residence.
These laws represent violations of civil, political and social rights, and as such, Hansen`s disease epitomizes the indivisibility of human rights. This understanding, however, is a recent achievement. Between the late 19th and mid-20th centuries, prophylactic segregation venues were built throughout the world to keep affected people under compulsory confinement; many of them still reside in these places and struggle for their rights to memory and land. It was in these modern leprosy colonies where the first voices emerged demanding recognition, not only of their dignity and rights, but also of their historically denied humanity. The continued failure of an approach that relies merely on medical care—in other words, the idea that effective treatment is sufficient to eliminate the stigma and discrimination associated with this disease—has raised public awareness of the affected persons’ struggle for dignity and recognition.
The most effective cure depends on an early diagnosis—essentially the right to a functional health system—and on the government’s duty to respect, protect and fulfill this right.
International recognition of the violations of human rights of persons affected by Hansen’s disease and their family members, who are often also stigmatized, led to the historic adoption of United Nations Resolution 65/215 in 2010 on the elimination of discrimination against persons affected by leprosy and their family members, and of the Principles and Guidelines for the elimination of discrimination against persons affected by leprosy and their family members. In 2017, Resolution 35/9 was approved, assigning a special rapporteur to promote and monitor the implementation of these Principles and Guidelines. I took on this mandate on November 1st, 2017.
Two main ideas will guide the mandate. First, stigma and discrimination related to Hansen’s disease are not a natural consequence of the disease, but the tip of the iceberg of social inequalities and inequities that have historically isolated affected people by Hansen’s disease and their families. A better understanding of the intersectionality around Hansen`s disease—such the interacting effects of gender, ethnic and/or racial and/or religious belonging, age, disability or poverty—is required to fight these inequities. Hansen’s disease embodies multiple forms of discrimination, and the implementation of the Principles and Guidelines must be linked to the Sustainable Development Goals.
Second, the key to eliminating discrimination is participation. I define participation as the right to equal opportunities, but also to equal results; the right to participate in all decision-making processes, as well as the planning, execution, monitoring, and evaluation of public policies that concern the lives of those affected. Furthermore, I understand participation as the right to have an active voice in public life. Supporting organizations of persons affected by Hansen’s disease is essential so that they can be their own representatives in public spaces.
Throughout the mandate, I will attempt to work with concrete goals, such as the abolition of discriminatory laws, as well as the legal harmonization or translation of the Principles and Guidelines into public policies that promote the empowerment of affected persons affected by leprosy and a meaningful improvement of their access to goods and services. These concrete objectives should address the particular circumstances in each country and should be designed through a participatory and consultative process with different stakeholders, such as governments, civil society, universities, and the United Nations system. Finally, these objectives must be put in practice in a constructive relationship with states based on technical cooperation.
The mandate will face several challenges, of course. One is precisely the lack of awareness amongst policymakers on the persistence of leprosy and the discrimination associated with it. Due to the fact that leprosy occurs in the most vulnerable groups of any society, and also that leprosy intersects with many diverse exclusionary factors, the barriers to the inclusion of persons affected remain thick and invisible. Making them visible and persuading decision makers to invest resources in order to bring down such barriers will certainly be a complex challenge.
On January 28th, many organizations globally will participate in World Leprosy Day. This day to raise awareness and build community was initiated by Raoul Follereau in the 1950s after a unanimous vote at the United Nations for a “world journey” dedicated to affected people. The ILEP (International Federation of Anti-Leprosy Associations) is promoting an event on Facebook to raise awareness of children’s disabilities caused by Hansen’s disease. In New Delhi, the Nippon Foundation and the Disabled People’s International will launch the Global Appeal against the stigmatization and discrimination associated with this disease. I invite everyone to a collective celebration of this day that casts light on the structural invisibility of people affected by Hansen’s disease, reminding us that they cannot be left behind.
Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.