By Stella Paul
HYDERABAD, Jan 29 2021 – Lilibeth Evarestus of Lagos, Nigeria doesn’t like the concept of handouts — she is against the idea of thinking of leprosy-affected people as weak.
Yet, for several months now, Evarastus – a human rights lawyer and founder of community welfare organisation, Purple Hope Foundation – has been spending a lot of time on the road, distributing food items and hygiene products among the leprosy-affected people in her community.
It’s because the COVID-19 pandemic has increased the challenges that the leprosy-affected community face: deep and widespread stigma, discrimination, misinformation, unfounded fear, besides living with the disease itself.
“If we want to really strengthen them and support them, we have to go to the people of the community where they are, instead of expecting them to come and get the help,” Evarastus tells IPS.
COVID 19 and leprosy-affected people
The economic, social, and health impacts of the COVID-19 pandemic, which has so far infected over a billion people and killed more than two million worldwide, have led to a significant increase in the need for humanitarian aid and social protection measures globally. According to experts, people affected by leprosy have been especially impacted by the worst consequences of the pandemic, largely because of pre-existing vulnerabilities and economic insecurities.
According to a report published by Global Partnership for Zero Leprosy (GPZL), 76 percent of leprosy-affected people in 26 countries have been adversely affected by the pandemic. These range from disruptions in their leprosy-elimination programmes to a loss of livelihood.
In Jharkhand, eastern India, the poorest leprosy-affected people, especially those living with disabilities, were forced to beg on the streets when India went into a nationwide lockdown to contain the spread of the coronavirus. This is according to Atma Swabhiman – a charity based in the city of Dhanbad, Jharkhand.
“Access of health services during COVID-19 period has become a challenge leading to further deterioration of health of people affected by leprosy specially elderly, with deformities and are on regular medication. Many are not being able to procure medicine in the absence of the money,” Shailendra Prasad, head of the charity, tells IPS.
The big gaps: drugs, medicare
On Jan. 27 and 28, members of leprosy-affected organisations from Asia, Africa and Latin America gathered online to share their experiences of dealing with COVID. It was organised by the Sasakawa Health Foundation of Japan, which has been working to support and strengthen leprosy-affected people’s organisations worldwide.
But in Brazil, where COVID-19 cases have surpassed 9 million and a new study by Sydney’s Lowy Institute ranked the South American nation with the worst response to the pandemic, leprosy-affected people are reporting a shortage of Multi-drug Therapy (MDT) supplies, which is crucial for the treatment of leprosy or Hansen’s Diseases. The reduced supply is due to the disruption in transportation and distribution caused by the pandemic and subsequent lockdown, said Faustino Pinto – a community leader from the Brazilian leprosy-affected people’s organisation, MORHAN.
However, according to the GPZL report, 13 other countries across the world have also experienced delays with in-country supply, distribution, and/or shortages. Some have also experienced challenges in accessing MDT because of travel restrictions and there is also a shortage of drugs for side-affects of the treatment.
But the leprosy-affected community and their programme partners are also drawing strength from the fact that the community hasn’t seen a specific spike in the number of COVID-related deaths.
“We are fortunate that till today nobody has died in our community (in Bogra) from COVID-19,” Shahid Sharif, head of Bogra Federation, tells IPS. Sharif credits this to the federation’s early warning and awareness-generation activities. “As soon as we learnt of the pandemic, we started educating our community members about washing hands with precautions like washing with soap and wearing masks as soon as we heard of the pandemic. We also distributed soap and masks, besides dry rations like rice, dal etc,” Sharif says.
However, when it comes to social stigma, the community has remained as vulnerable as ever.
In Tanzania, where the president has ruled out purchasing any coronavirus vaccines, citizens have been rushing to buy health insurance to secure themselves against any possible health challenges.
But people affected by leprosy cannot access this facility as health insurances are not sold to them, Fikira Ally, an activist from Tanzanian Leprosy Association, tells IPS.
“Those affected by leprosy have no access to this. This is important because it is a human right issue. Everyone would need this once in their lifetime and I request the authorities to look into this,” explains Ally.
Community leader Maya Ranavare is from Maharashtra – the worst COVID-affected state in India with nearly 2 million cases and over 150,000 deaths. Ranavare tells IPS that people still continue to look at leprosy as more infectious and scarier than the coronavirus.
“The whole world has been in lockdown, flow of life has been disrupted but still most people follow the social distancing only because there is a government rule. But the same people maintain social distancing from a leprosy-affected person even when there is no scientific reason to do it,” Ranavare says.
Calls to end stigma and discrimination
Some, however, are optimistic of ending the social stigma if the community has better access to education, healthcare and economic sustainability. “We can change the minds of the entire community, but we need a sustained support, until we have become truly empowered,” says Ally.
Yohei Sasakawa, the World Health Organisation (WHO) Goodwill Ambassador for Leprosy and chair of the Sasakawa Health Foundation, has renewed his call for ending the stigma against leprosy-affected people.
“I believe we will achieve a world without leprosy one day. But along the way, we need to realise an inclusive society in which everyone has access to quality treatment and services, and a diagnosis of leprosy no longer comes with a possibility of devastating physical, social, economic or psychological consequences,” Sasakawa said in a pre-recorded speech to mark World Leprosy day on Sunday, Jan. 31.