Participants from organizations focused on helping Hansen’s afflicted from Asia, Latin America and Africa with the World Health Organization (WHO) Goodwill Ambassador for the Eradication of Leprosy, Yohei Sasakawa (central pink shirt) pictured in 2019, attended the Global Forum of People participated in Hansen’s Disease Organizations in Manila, Philippines sponsored by the Sasakawa Health Foundation and the Nippon Foundation. Photo credit: Stella Paul / IPS
HYDERABAD, Jan. 29 (IPS) – Lilibeth Evarestus of Lagos, Nigeria, doesn’t like the concept of the handouts. She is against the idea of seeing people affected by leprosy as weak.
For several months now, Evarastus, a human rights lawyer and founder of the Purple Hope Foundation, has been on the road a lot, distributing food and hygiene products among the people affected by leprosy in her community.
This is because the COVID-19 pandemic has increased the challenges for the population affected by leprosy: deep and widespread stigma, discrimination, misinformation, unfounded fear, and living with the disease itself.
“If we really want to empower and support them, we have to go to the people in the community they are in instead of expecting them to come and get help,” Evarastus told IPS.
COVID 19 and people affected by leprosy
The economic, social and health impact of the COVID-19 pandemic, which has infected over a billion people and killed more than two million people worldwide, has resulted in a significant increase in the need for humanitarian aid and social protection efforts worldwide. According to experts, people affected by leprosy are particularly affected by the worst effects of the pandemic, largely due to pre-existing vulnerabilities and economic uncertainties.
According to a report by the Global Partnership for Zero Leprosy (GPZL), 76 percent of people in 26 countries are affected by the pandemic. These range from disruptions in their leprosy eradication programs to loss of livelihood.
In Jharkhand, East India, the poorest people affected by leprosy, especially those with disabilities, had to beg on the streets when India was locked down nationwide to contain the spread of the coronavirus. This is according to Atma Swabhiman – a charity based in Dhanbad, Jharkhand.
“Access to health services during the COVID-19 period has become a challenge, leading to further deterioration in the health of people affected by leprosy, especially the elderly with deformities who take regular medication. Many are unable to get medicines without money, ”Shailendra Prasad, head of the charity, told IPS.
The big gaps: drugs, medication
On January 27th and 28th, members of lepers from Asia, Africa and Latin America gathered online to share their experiences in dealing with COVID. It was organized by the Japanese Sasakawa Health Foundation, which works to support and empower organizations affected by leprosy worldwide.
In Brazil, where COVID-19 cases have surpassed 9 million and a new study from the Lowy Institute in Sydney ranked the South American nation with the worst response to the pandemic, people affected by leprosy report a lack of multi-drug therapy ( MDT). Supplies vital to the treatment of leprosy or Hansen’s disease. The reduced supply is due to the interruption in transportation and distribution caused by the pandemic and the subsequent lockdown, said Faustino Pinto, a community leader of the leprosy-stricken Brazilian people’s organization MORHAN.
However, according to the GPZL report, 13 other countries around the world have experienced delays in supply, distribution and / or shortages in the country. Some have also experienced difficulty accessing MDT due to travel restrictions, and there is also a lack of medication for treatment side effects.
However, the community affected by leprosy and its program partners also draw strength from the fact that the number of COVID deaths in the community has not increased specifically.
“We are fortunate that to date no one in our community (in Bogra) has died of COVID-19,” Shahid Sharif, head of the Bogra Federation, told IPS. Sharif attributes this to the association’s early warning and awareness-raising activities. “As soon as we learned about the pandemic, we started educating our community members about hand washing with precautions like washing with soap and wearing masks as soon as we heard about the pandemic. In addition to dry rations such as rice, dal, etc., we also distributed soap and masks, ”says Sharif.
However, when it comes to social stigma, the community has remained vulnerable.
In Tanzania, where the president has ruled out the purchase of coronavirus vaccines, citizens have rushed to get health insurance to cover themselves against possible health problems.
However, people affected by leprosy cannot enter this facility as they are not sold health insurance, Fikira Ally, an activist with the Tanzanian Leprosy Association, told IPS.
“Those affected by leprosy have no access to it. This is important because it is a human rights issue. Everyone would need this once in their life and I urge the authorities to look into it, ”explains Ally.
Community leader Maya Ranavare is from Maharashtra – the worst-hit state in India by COVID with nearly 2 million cases and over 150,000 deaths. Ranavare tells IPS that people still view leprosy as more contagious and scary than the coronavirus.
“The whole world was closed, the flow of life was disrupted, but most people only follow social distancing because there is a government rule. However, the same people maintain social distance from someone affected by leprosy, even if there is no scientific reason for it, ”says Ranavare.
Calls for an end to stigma and discrimination
However, some are optimistic that the social stigma will end when the community has better access to education, health care, and economic sustainability. “We can change the mind of the entire community, but we need sustained support until we’re really empowered,” says Ally.
Yohei Sasakawa, World Health Organization (WHO) Goodwill Ambassador for Leprosy and Chairman of the Sasakawa Health Foundation, has again called for an end to the stigma against people affected by leprosy.
“I think we will one day achieve a world free of leprosy. However, along the way, we need to create an inclusive society where everyone has access to quality treatments and services and where diagnosing leprosy no longer has the potential to destroy physical, social, economic or psychological consequences, ”Sasakawa said in one Recorded Speech for World Liver Day on Sunday, January 31st.
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