Health campaigners are calling for an end to the use of the word leper, saying the language frequently used by politicians and others during the pandemic has made people with leprosy even more marginalised.
The metaphor of the socially outcast “leper” has been used often, whether in media reports on stigma against early Covid-19 patients or by politicians in Italy and Brazil complaining about being seen as “leper colonies”. Campaigners now want an end to the use of what they call the “L-word”.
“This type of language perpetuates a mindset against people still suffering,” said Mathias Duck, global advocacy manager at The Leprosy Mission, a British charity.
“People affected were already marginalised before the pandemic, and the pandemic has pushed leprosy even further down the priority list.”
According to a UN report presented to its human rights council last week, people affected by leprosy have lost access to treatment, had their drug supplies disturbed, been cut off from work and have died in high numbers from Covid-19.
A 2019 UN report said stigmatisation of leprosy, despite it being a curable condition, has pushed many who suffer from the disease into vulnerable positions where they could not access regular work or healthcare and were even being banished from their communities.
“People affected by leprosy have been denied testing, treatment and vaccines for Covid. We insist on handwashing and masks, but these communities didn’t have access to that or even basic food because of the lockdowns,” Duck said.
Duck, who was himself cured of leprosy, said that few people realised how many people still suffer from the disease when they use the term “lepers” in a derogatory way.
Despite being associated with medieval times, leprosy is still found across the world. According to the World Health Organization, more than 200,000 cases were found in 161 countries in 2019.
“What most people affected by leprosy want is to be called by their name, not to be marked by their condition,” Duck said.
The Leprosy Mission has been attempting to call out the use of the word “leper” as shorthand for outcast, which has increased during the pandemic, and similar debates are happening elsewhere in the world.
Last month in the Philippines, there was a row about the word being used in a supreme court case.
“Thankfully, with the multidrug therapy, leprosy is curable. But what is hard to cure is the stigma associated with the disease. Stigma affects the core being of a person with or affected by leprosy,” the Coalition of Leprosy Advocates in the Philippines said in a letter published in May.
“Please let us stop using ‘leper’ as a negative metaphor for being an outcast, isolated or condemned, which reinstates the stigma that we have been trying to erase.”
The bacteria that causes leprosy spreads through droplets but multiplies slowly, meaning it can take years for a person to experience symptoms. Serious disabilities can be avoided if they are diagnosed and treated quickly, but many of the programmes that do this have suffered during the pandemic, especially in countries where health systems have been overwhelmed by Covid cases.
Alice Cruz, the UN’s special rapporteur for people affected by leprosy, told the human rights council last week that 10 countries had suffered shortages in the drugs used to treat leprosy in 2020. She said there were 50% fewer reported diagnosed cases, which is feared to be down to a reduction in workers reaching communities. Cruz said people affected by leprosy were often “invisible and forgotten”.
“There is no building back better if states fail to put those who have been systematically pushed furthest behind at the centre of recovery efforts,” she added.