New Zealand is helping to lead in the fight against leprosy, just as it has led in the battle against Covid-19, according to an organisation petitioning the United Nations for more action against discrimination of people with leprosy.
Gillian Whitley, executive director of the Leprosy Mission New Zealand, says New Zealand is the first of 31 countries around the world to launch a global petition calling for an end to 130 discriminatory laws against the human rights of people affected by leprosy.
Faulty perceptions about leprosy linger – that it is fatal; that it is highly infectious – and those perceptions give rise to stigma and discrimination, Whitley says.
The reality is it isn't fatal, it isn't highly infectious (it usually takes prolonged exposure) and it can be cured with a multi-drug therapy (MDT) taken as a simple pills. After 72 hours of MDT, transmission is stopped.
But leprosy's highly visible disfigurement of many with the condition is what gave rise to the fear and stigma and, in past times, the establishment of laws so restrictive they included colonies to which people were banished forever.
Whitley says New Zealanders are all looking forward to the removal of the restrictions we are currently under with the worldwide Covid-19 pandemic – but people affected by leprosy have been waiting for the removal of restrictive laws for decades.
In fact, she says, these discriminatory laws are in, many cases, just as damaging or even worse than the disease itself: "Some of the laws around the world basically enshrine that stigma and discrimination in law – and that is what this petition is about and why we want people to sign it before we present it to the United Nations Council in September."
"One example is that children of a parent or parents with leprosy are expelled from school. Those children, when they are grown and have children of their own, then find their children are also excluded from school. So it is inter-generational; they carry a deep shame even after they are cured."
The effect of such devastating social stigma is that it helps to keep leprosy alive – because people affected, typically in poverty, see the damage done to others and elect not to go to the doctor to have treatment.
"In some parts of the world, leprosy can be grounds for divorce and exclusion from opportunities to work, travel or education – and the stigma can cut much deeper than that. We have to ask ourselves, if we were in poverty and subject to leprosy, would we step forward and expose ourselves to that kind of discrimination, becoming outcasts?"
People with leprosy-related disabilities are perhaps the only remaining people with disabilities who face legal discrimination from such laws, she says, denied basic social rights as well as the right to political participation and equal recognition before the law.
The petition is aimed at ridding the world of the discriminatory leprosy laws – and Whitley says New Zealand, with its experience of the Covid-19 pandemic, can also help lead the way.
"We saw a bit of that stigma ourselves when the lockdowns were in force last year," she says. "There were reports then that some people who contracted Covid-19 were being subject to some stigmatisation. I found that very sad – and we have learned that it need not have happened."
"In fact, what happened here was that we learned the power of kindness and unity. We learned about the virus and what to do and what not to do – and what grew out of that was our kindness to each other."
"That's what is needed for people affected by leprosy and that's part of the reason why New Zealand is launching this global petition first."