In Kwa Bada village in north-eastern Tanzania, community health volunteer Sylvia Petro is hunting an ancient, endemic disease and shining a light on the devastating stigma that surrounds it.
Leprosy has long plagued humanity yet has been treatable for decades by multidrug therapy. Described in the literature of ancient civilizations, sufferers are often shunned by fearful families and communities.
Leprosy can cause permanent damage to the skin, nerves, limbs and eyes if left untreated. Yet when symptoms appear, patients often lock themselves away in shame, making it hard to treat and cure.
Sylvia understands all this, as she has been treated for leprosy herself.
“The promise of a cure helps some patients accept their situation but, in many cases, they still try and hide their worsening condition, even from their own families and in their own homes,” Sylvia says.
“Family members of patients that seek treatment often cannot accept that a relative has leprosy.”
Despite the challenge, Sylvia is trusted and well known in the over 500-household strong community. She goes from door to door, patiently encouraging people to seek treatment.
“I want to make sure everyone in my district understands how Leprosy is spread. I want every single case in Muheza to be registered for treatment,” she says.
Thanks to the World Health Organization (WHO)-supported multidrug therapy led by Tanzania’s National Tuberculosis and Leprosy Programme, the country brought the number of Leprosy cases down from nearly 35 000 in 1983 to under 1600 in 2019. The national prevalence has dropped to 0.3 cases per 10 000 people.
We are working to integrate leprosy control in general health care services and apply cost-effective methods to improve community awareness and acceptance
The National Tuberculosis and Leprosy Programme also ensures timely case-finding and treatment, contact-tracing and household contact screening. Areas reporting high infections and disabilities are given priority.
“We are at an encouraging stage in our effort to eliminate leprosy. We are working to integrate leprosy control in general health care services and apply cost-effective methods to improve community awareness and acceptance, and to combat stigma and discrimination against persons and families affected by leprosy,” says Dr Deus Vedastus Kamara, the National Leprosy and Tuberculosis Programme Coordinator.
Fuelled by stigma and a lack of understanding in communities, the disease remains stubbornly endemic in Muheza and nine other districts.
The last mile
“I thought the spots would just go away,” says Belinda Sekioni, who is now on multidrug therapy. “I thought maybe a plant’s juices had reacted with my skin, or that I stayed in the sun too long on the farm.”
“I’m thankful to the health workers who counselled me. The most important thing I learned was that leprosy is not spread down through families. This corrected my misunderstanding.”
Sylvia Petro is one of 90 community health volunteers trained by National Tuberculosis and Leprosy Programme and WHO with support from the Nippon Foundation of the Sasakawa Health Foundation to end the disease in Tanzania in line with a declaration towards a leprosy-free world reached in Bangkok in 2013 by the Health Ministers from all high-burden countries.
National Tuberculosis and Leprosy Programme is also strengthening monitoring and evaluation to collect better data to target responses, improve coordination and boost knowledge and awareness of the disease and available treatments.
Since the project began in 2017, new cases in Muheza have halved to just 15 in 2020. Building on this success, Tanzania has now set up a 2021–2025 strategic plan to eliminate leprosy.
Community health workers like Sylvia and WHO-supported training programmes to boost community awareness and help health workers correctly diagnose the disease are critical to the endeavour.
“Community awareness of the disease has increased in Muheza, bringing down the number of cases in Muheza district and reducing the number of patients that seek treatment after the disease has already advanced,” said Dr Jessie Singano, Muheza District’s Leprosy and Tuberculosis Response Coordinator.