Pioneers in Congolese ophthalmology

    Dutch journalist Sarah Haaij traveled to Congo with Light for the World. She wrote a strong article for the Dutch magazine Vice Versa. Discover here what she learned in Congo about the work of Light for the World.

    In Congo, blind and partially sighted people are left to someone else’s good will. Light for the World wants to change that. Not as before, by donating discarded glasses from Europe, but by organizing local, independent eye care.

    Text and images: Sarah Haaij

    Almost everyone can remember him: the old man in black and white, with a tropical helmet and thick glasses with jam jar glasses, who stare at you a little naughty from the cover of Congo, the monumental work of David Van Reybrouck.

    That man is the 125-year-old Congolese Etienne Nkazi-A-Kanda-Ndotepelo. The publication of his photo had quite an impact; in the Netherlands the statue received the prize for the Most Beautiful Book Cover, but in Belgium it led to a lawsuit. The judge dismissed the family’s claim, but in Germany and the United States, the offending photo of the cover was left out. Could it have been Ndotepelo’s bare shoulders that bumped the family? Or was it the thick horn glasses whose glasses are so damaged that Ndotepelo hardly seems to be able to see through them, that gives him something clumsy? As if, after 125 years of Congolese history has passed by, oh cliché, those eyes need help to see.

    Light for the World makes eye care accessible to everyone.

    While seeing is so crucial in a country like the Democratic Republic of Congo (DRC). Those who are visually impaired or blind are at the mercy of others, says Dr. Jean-Marie Ngbenga. “And that means total dependence.” Ngbenga knows, he is a doctor and program coordinator for  Congo the Belgian branch of Light for the World, an NGO that wants to make eye care available in Congo. Not as before, depending on the fathers and their well-intentioned old glasses from Europe (from which Ndotepelo probably also got his frame), but structurally. By setting up eye hospitals, training ophthalmologists and having eye care included in the local health system. “We don’t just want to make patients independent”, he says in his office in the southern city of Lubumbashi, “But our care as well.”

    Eye test in the classroom at the school in Lubumbashi.

    How do you do that in a country where 800,000 people are blind and children lose their sight due to avoidable eye diseases? In one of the poorest countries in the world, with 200 eye specialists out of a population of 85 million people, and where the fight against Ebola and measles epidemics dominate health spending? Ngbenga, who wears rimless glasses himself and has the slender hands of someone who can operate, sighs, “That’s quite a struggle.”

     

    It already starts at the training, where no one opts for ophthalmology. “Ophthalmology is not sexy, students want the ‘real thing’: bones, cuts and major illnesses.” Moreover, most donor money goes to infectious diseases, not to basic care. “I also never thought I would do this,” laughs Ngbenga. “But now I am caught by those eyes.”

    He regrets that in the rest of his country there is still little interest in eye diseases and the impact they have. Conditions such as cataract, refraction problems, glaucoma and infections are not at the top of the health agenda. “The government is indifferent.” As a result, practically nothing is done in the field of detection and ophthalmology in Congo. While at least half of blindness cases can be operated on or prevented. Just because of better nutrition during pregnancy, a lot less children would be born blind. ‘Imagine’, says Ngbenga, “you can give people their lives back with a relatively simple intervention.”

    The 15-year-old, partially sighted Mbombo receives individual writing lessons.

    “She will be slow”, people thought about Mbombo. The fifteen-year-old hangs very concentrated over an extra large sheet of paper. She carefully writes the letter B. “It’s difficult,” she says, her pupils darting back and forth restlessly. Still, according to the supervisor next to her in the school desk, writing is going much better than a few weeks ago. It was only then that a visit by the education team at Light for the World discovered that Mbombo is partially sighted. Now the teenager has a handheld telescope to decipher the chalkboard texts, extra-large exercise books and new glasses.

    But more important than that: she knows she can keep up with her classmates. “Ignorance and marginalization are a major problem”, says Frédéric Ilunga, coordinator of the project to locate visually impaired schoolchildren such as Mbombo. “Teachers think that the children cannot come along, put them in a corner and continue with the lesson.” The parents don’t know what to do and they leave their child at home. On Sunday they hear a preacher in one of the many Congolese splinter churches tell that God will heal the eyes himself. “And yes,” says Ilunga, “then the pastor has more influence than we do.”

    Stories like Mbombo’s should no longer occur, says ophthalmologist Ngbenga. Ophthalmology must therefore be a permanent part of healthcare: “From the schools to the towns and villages.” The Mwangaza (“light”) Eye Hospital in Kolwezi is the first step towards that goal.

    Mwangaza eye hospital in Kolwezi.

    Ngbenga proudly walks through the freshly painted corridors of the only functioning hospital in this mining town; and that only for the eyes.  “In a country where there is nothing, you have to start at the beginning.” That means setting up eye hospitals in the larger cities such as Lubumbashi and Kolwezi, and training specialist

    But also: ensure that this care is accessible to all wallets. At the place where the nuns of the parish Marie Immaculée still hung their laundry before 2016, 300 consultations and dozens of surgeries are now carried out weekly by chief doctor Socrate Kapalu (ed.: on Monday 4 May we unfortunately had to say goodbye to doctor Socrate Kapalu who died in a tragic traffic accident). “You can see how every small operation makes a difference,” says the young specialist. “I love this job.” It is also magical for him to see how a child of four looks around for the first time after an operation of less than an hour.

    But those who want to change the healthcare system need more than a jar of donor money and a hospital. That is not only about implementation, but also about ownership – and that touches Ngbenga directly. Before this ophthalmologist became program coordinator in 2015, an expat had his job. But to influence the system you have to know it first. “I am Congolese and have been involved in this health system for a long time. I know the hierarchy and how it works “Ngbenga says. According to him, some foreign aid workers had the principle “it is all corrupt here, so we do it our own way”. That there is an infinite amount to criticize on Congolese government and health institutions, he agrees. “But sometimes you have to work inside and not outside the system.”

    An innocent incident that the doctor still remembers with a smile is the visit of the priest’s mother. Mwangaza hospital is located on the grounds of the sisters of Marie Immaculée, the partner organization of Light for the World. The sister who mans the hospital cash register had given the priest’s mother free eye medicines. There was controversy on the European side. “You can also accept that things are different here,” says Ngebenga – according to him, you should be able to place such an incident in the light of local mores. He is mainly concerned with mutual respect between the local and the European partner.

    On Monday, May 4, we unfortunately had to say goodbye to Dr Socrate Kapalu who died in a tragic traffic accident.

    More important than an anecdotal culture clash is the idea of ownership. And that, Ngbenga shows, you should be able to give, but also take. With his arrival, the chief physician has had more to say. “Kapalu is number one in this hospital. He runs the place, not the NGO.” The staff is aware that it is not employed by the ‘muzungu’ (freely translated as “foreigner”), but bears responsibility for the hospital.

    In his early weeks, Ngbenga, as the face of the donor organization, received an email or question about every strip of painkillers or bottle of alcohol that had been consumed. Every decision was made to the donor. “No one wanted to make decisions; self-responsibility was zero.”

    So he keeps hitting the staff over and over again, “This is your hospital, you have to take your responsibility.” Even if Light for the World quits for whatever reason, he wants the hospital to continue, so that care and jobs remain available without a donor. “An independently running hospital is in our own interest.”

    4-year-old Margureth Banzekabamba is operated on cataracts before, during and after surgery.

    The first eye hospital that opened Light for the World, Sainte Yvonne in Lubumbashi, is already approaching independence. Here, the specialists’ salaries are now paid from their own income. The Belgian donor only provides assistance for training and major investments in the hospital. “But operationally it is going,” says director Hervé Tambwe not without pride.

    Now Ngbenga and his team are looking for ways to make Mwangaza profitable too. Own income is already somewhat from the spectacle sales to more wealthy customers. “And of course the patients who can do that just pay for their care,” says Elisabeth Ngoie Sanza, the nurse who has to ensure that the eye clinic remains accessible to the poorest of the poor.

    People who have an eye problem but no money ends up at Sanza’s desk. With a smile so disarming that you dare not lie, she figures out the amount the patient can contribute to medicines or surgery. How does she do that? She is now very adept at that, Sanza beams. Children up to the age of fifteen are free, “And then I go and have a look. How is the patient dressed? How does he talk? Are they trying to haggle?” People who have nothing will never negotiate, the sister knows. In this way she tries to get a realistic contribution. “Glasses cost $ 30, at least find something!” I say.

    In the future, Ngbenga would also prefer to attract investors. “Not for charity, but because our hospital is an attractive investment.” But before that happens, the focus is first on phase two – organizing eye care locally. “It is nice that the hospitals are now there,” explains Isabelle Verhaegen, director of Light for the World Belgium. But according to her they are also a kind of islands of good care. “We also want to have ophthalmology included in the Congolese health system. That is a major strategic change for us.” Unfortunately, that is not evident in Congo. Of the total health budget in Congo, 10 percent comes from the government, 40 percent of the population (cash settlement), and half from international organizations, estimates Ngbenga. “So the Congolese government doesn’t do anything about ophthalmology, you just have to think.” But to change health policy you need the goodwill of that absent government. At the same time, you run into parties everywhere who see “a walking bag of money” instead of your good intentions. There is continuous maneuvering between these diverse interests.

    Partly due to his many years of experience within the Congolese health system, Ngbenga managed to achieve success in 2017. He brought all important parties, from ministry to specialists, to the table. After a week of consultation, an agreement was reached confirming that ophthalmology should be part of the health package in every Congolese hospital.

    The meeting was a milestone for Light for the World, but the NGO had to organize the funding itself. Otherwise the consultation would never take place. Anyone who wants to sit at the policy table must bring money, according to the maxim in Congo. “We do very little in direct government support,” emphasizes director Verhaegen, “but we thought this was so important. It lays the foundation on which we can continue to work.”

    According to the Congolese Ministry of Health, all 350 district hospitals must now provide a basic form of ophthalmology. However, because the practice of this rule is not yet forthcoming, the Belgian organization has already jumped into this nich. The NGO offers nurses in the south of Congo an 18-month course in ophthalmology. “In a normal world with a normal government, this would of course be arranged by the government,” said Ngbenga. But Congo is not the normal world, he just wants to say. “And now we make sure that there is an idea about eye care within that policy.”

    Local hospital in Kazense where Celestine Mutombo now provides eye care.

    Director Jeanette Boniche Rosales’s hospital in Kazense, another 50 kilometers inland from Kolwezi, is such a small district hospital But despite the generous offer – an all-inclusive eye specialization in Kinshasa for one of her nurses, Jeanette Boniche Rosales had her doubts. “We couldn’t really miss Celestine for so long and got into trouble with our occupation,” says the director of the hospital in rural Kazense. But now she’s happy with eye doctor Celestine Mutombo who “does everything to the eye except surgery.”

    The demand for eye care in the vast green savannah of South Congo appears to be high. In Mutombo’s first week, 400 patients registered for a free consultation. He now also visits the most remote villages with a mobile clinic. Yet Rosales still has a list of at least 45 people who need surgery, but they have no money for the ride to the large hospital in Kolwezi. She does not have to expect anything from the government. “The poverty of the people here remains the biggest problem for good care.”


    The 15-year-old, visually impaired Mbombo receives individual writing lessons.

    31-year-old Kasongo Mwenze should know. When he started to go blind nine years ago, his life on the land ended. In the village it was rumored that he was bewitched. And because he could no longer put food on the table, his wife and children left. “Then I heard about an eye hospital in Kolwezi.” Mwenze did not hesitate for long. He sold a goat to pay for the 80-kilometer journey and had Dr. Socrate Kapulu operated on his cataract.

    Today the young Mwenze is back in the Mwangaza hospital to help his father get rid of cataracts free of charge. Ngbenga is visibly moved. But that it is such a struggle to establish a “normal”, “independent” and “charitable” health care system in his country, he says disappointed. Then his slender doctor’s hands clap. – we are ready for the next struggle for independence: that of Congolese care.

    Article reproduced in full from Vice Versa, spring 2020 edition with permission from the journalist and the magazine. The pdf of the article can be found here.

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