From The New York Times
RIO DE JANEIRO — Thiago Nascimento expected no help from the government when the coronavirus arrived in his neighborhood. He was worried because, as in other favelas — informal settlements throughout the city — people were made vulnerable by a lack of income, safe housing and clean, running water. A study later showed that people in favelas were twice as likely to die if they had Covid-19 than those in higher-income neighborhoods in the city.
Mr. Nascimento’s faith in government assistance went from bad to worse as the pandemic wore on. Amid a surge of cases in May 2021, the police conducted a drug raid in his favela, Jacarezinho, which caused 28 deaths, injured additional bystanders and terrified residents. When community members built a memorial to honor the dead, police demolished it with a crowbar and an armored vehicle. “This broke any trust,” he told me.
Thiago Nascimento, the founder of LabJaca. Credit: Ian Cheibub for The New York Times
Members of LabJaca at the organization’s headquarters, in Rio de Janeiro, Brazil. Credit: Ian Cheibub for The New York Times
Experts often cite mistrust of the government as a key reason certain communities have suffered disproportionately during deadly outbreaks, including Ebola and Covid-19. Mistrust is a serious problem in a pandemic if it prevents people from obeying health recommendations, seeking medical care and accepting vaccines.
In marginalized communities, mistrust is often rooted in a history of discrimination, neglect or abuse at the hands of authorities. The onus to mend those relationships should therefore be on governments that have proved untrustworthy, and that requires political change. But the next pandemic — or another disaster — may strike sooner. In the meantime, health officials and researchers would be wise to learn how to assist the communities that are most in need. That starts with recognizing the grass roots power that has kept them resilient for so long.
Lessons lie in Brazil’s favelas because, in the face of decades of government neglect, many have created internal systems to support one another. When Covid-19 began to spread and people were out of work, community leaders like Mr. Nascimento raised money to provide food and face masks for those in need. In Jacarezinho, Mr. Nascimento co-founded a collective called LabJaca to report Covid-19 data because he and others suspected that official counts had underestimated case loads. Journalists and community leaders in other favelas were attempting something similar, and soon LabJaca was one of several groups feeding data into a dashboard tracking the disease across 450 favelas in Rio de Janeiro.
Janice Delfim, a teacher and activist in Morro dos Prazeres. Credit: Ian Cheibub for The New York Times
A student reads a book during her time at Morro dos Prazeres Educa, a project developed by Janice Delfim to help children to learn after school. Credit: Ian Cheibub for The New York Times
In the hilltop favela of Morro dos Prazeres, Janice Delfim, a community leader, printed out lesson plans for children when schools closed because their families didn’t have computers at home. And when the kids complained of hunger, she appealed to nongovernmental organizations for donations of food, face masks and hygiene products. In other favelas, community leaders installed faucets in heavily trafficked paths so that people without running water could wash their hands.
Brazil’s president at the time, Jair Bolsonaro, denied the gravity of Covid-19 as hospitals overflowed. He encouraged mass gatherings and unproven treatments. He disputed the worth of face masks and, later, of vaccines. But even when health authorities broadcast recommendations for people to wash their hands and stay home, Ms. Delfim said their words rang hollow for those living without running water or the ability to work from home. “Our reality is different,” she told me.
Fernando Bozza, a doctor and public health researcher at Fiocruz, a research institute in Rio de Janeiro, realized the need to work at a grass roots level as Covid-19 began to spread in favelas. He and other Fiocruz scientists partnered with the nongovernmental organization Redes da Maré, which had long served Rio’s massive Maré favela and residents from the community.
Dr. Fernando Bozza. Credit: Ian Cheibub for The New York Times
A resident of Complexo da Maré receives care.Credit...Ian Cheibub for The New York Times
Through this coalition, scientists provided free Covid-19 tests. When someone tested positive, a member of the group would offer to deliver food, cleaning supplies and masks to the person’s home, as well as provide check-ins with a health worker over the phone. Residents in the coalition also relayed circulating rumors for the scientists to correct. And those who were influential in local WhatsApp groups or on Instagram or TikTok created messages to combat the misinformation. “It was a continuous listening process with people from the community leading,” Dr. Bozza says.
Such coalitions emerged around the world. In California’s hard-hit Central Valley, local researchers cooperated with grass roots organizations serving farmworkers to roll out testing and care. In Goa, India, a network of community correspondents that had long been working in rural districts of the country partnered with Lieve Fransen, a doctor and adviser in global public health based in Belgium. Dr. Fransen held daily video calls with the correspondents about how to treat the severely sick when clinics were overwhelmed or too far away. When Covid-19 vaccines rolled out, she says that uptake was high because of the trust that people had in these correspondents, which had been built over nearly 20 years.
Community-led initiatives should be evaluated with the same rigor as any intervention. In an unpublished report, Dr. Bozza and his colleagues found that weekly Covid-19 deaths dropped by 60 percent in Maré after eight months of their work with the coalition, compared to a 28 percent reduction over the same period among a similar number of people living in similar favelas in Rio.
It’s more complicated to study the impact of community-led work on longer-term problems, like diabetes, poverty and low educational attainment. These issues render people vulnerable to pandemics, so they’re important to tackle. Jason Corburn, a public health researcher at the University of California, Berkeley, who has been trying to improve such metrics in nearby Richmond, warned that this work takes time. “Some of these problems are 20 or 80 years in the making, so we need to track them over time, incrementally,” he said.
Despite a recent push for more community-led efforts in public health, alliances built during the pandemic are dissolving as projects shut down with the decline of Covid cases. Such quick exits breed mistrust because people may feel used by researchers who seem only concerned with a fleeting cause, as opposed to their welfare.
Another problem that befalls public health initiatives meant to include communities is that they often devolve into tokenism as advice from residents is brushed aside. Researchers and health officials don’t easily hand over the reins, said Mr. Corburn. “Letting communities lead goes upstream against the tide of science, expertise and bureaucracy that has been embedded in our institutions for 250 years.”
Nonetheless, the communal spirit survives with or without outside support. Today Mr. Nascimento is connected with community leaders across many favelas and they continue to coordinate efforts. Lately, they’ve tackled police violence and assisted residents rendered hungry or homeless by flooding.
Ms. Delfim’s residents association has grown larger because more people want to help out. There’s no shortage of work to be done, and it comes with mental health benefits that emerged during the pandemic and live on. “We came together,” she said. “It was like collective therapy.”
Amy Maxmen is a science journalist and a press fellow at the Council on Foreign Relations.
Ian Cheibub for The New York Times
Artigo published in the The New York Times, on 09/04/2023. Link to the article.
Rio de Janeiro, April 9, 2023.
