"My family members abandoned me," Tilahun Wale sighs, looking wearily at his right foot, amputated by leprosy, an infection that persists in Ethiopia, as does the discrimination that affects its victims.
"Because of the disease, they blocked my number and refused to speak to me," laments the 46-year-old farmer from Oromia, the country's most populated region, where he contracted leprosy about ten years ago.
Ethiopia, an East African giant with a population of about 130 million, eliminated leprosy as a public health problem in 1999, with fewer than one case per 10,000 people. But some 2,500 infections are still recorded each year, according to the World Health Organization (WHO).
A pathology often considered shameful and still perceived as a divine punishment in this very religious country, leprosy has the sad privilege of being one of the twenty tropical diseases considered neglected by the WHO.
Caused by the bacillus Mycobacterium leprae, this transmissible infection attacks the skin and peripheral nerves, with potentially very serious after-effects, including physical deformities.
Leprosy is still present in more than 120 countries worldwide, with nearly 200,000 cases reported each year, even though it "is curable and early treatment can prevent disability," the WHO points out.
– Disgusted pouts –
Haile Kairos, who was seen as Tilahun Wale at Alert Hospital, a reference for the treatment of the disease in the capital Addis Ababa, says he began developing it when he was a child.
"I noticed lumps appearing on certain parts of my body," says the 35-year-old, who hides the effects of leprosy on his legs with a blanket.
There is "still stigma" surrounding the disease, he sighs, referring to the disgusted expressions of some, while others avoid it, as Ethiopian society, according to him, "does not have enough information about the disease."
Several dozen patients are treated at Alert Hospital, founded in 1934 as a leper colony. The institution was located on the outskirts of Addis Ababa, far from any residential areas, due to the stigma surrounding the disease. Urban sprawl in recent decades has brought the population structure closer together.
But the way people view this disease takes time to evolve, notes Solomon Getahun, project manager at International Leprosy Mission, an NGO that provides medical assistance to sufferers and also raises awareness.
Discussions are being held in different communities across the country "with people affected by leprosy to explain the challenges" of daily life, explains Mr. Solomon.
The NGO also offers microcredit to patients, most of whom have difficulty finding employment.
– “Mental well-being” –
Atale Mekuriyaw, 70, is weaving cotton outside a building where a dozen lepers, mostly women, make rugs, traditional clothing, and even jewelry that are then sold.
"This work helps us support our families," she says, despite the "modest salary." For every kilo of raw cotton woven, the septuagenarian says she earns between 100 and 150 birr (between 70 cents and one euro).
"But coming here and spending time like this is important to us. It's better than staying at home. It contributes to our mental well-being," continues this leprosy patient since childhood, who says she feels less discriminated against today.
"In the past, people would say, 'Don't go near him!'" she recalls. "But now, thanks to access to medication, the stigma has diminished."
The WHO has welcomed the progress made in Ethiopia in treating and caring for patients. However, recent drastic cuts in development aid announced by the US administration and other donor countries could have detrimental effects.
The UN organization announced at the end of March that it was cutting its budget by a fifth following the decision of the United States – its main contributor – to withdraw.
However, "the preventive medications (against leprosy) that we receive are supplied directly by the WHO," worries Shimelis Gezahegn, director of Alert Hospital. However, the Ethiopian authorities are working to put together a "contingency plan" to compensate for these cuts, he observes, hoping that they will succeed.
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