In October 2020, when the Government of Argentina presented its annual budget proposal, the allocation to activities and programs related to Chagas—an infectious disease—was the highest it has been in the last ten years. This news is being celebrated by civil society organizations (CSOs) in the country that, together with the national audit office, the Auditoría General de la Nación (AGN), have been working to shine a spotlight on the disease for many years.
Four years before this budget allocation was announced, a group of physicians approached Argentina’s Civil Association for Equality and Justice (ACIJ) with a challenge: How to get the government to respond to a highly preventable yet rampant disease known as Chagas?
“Everyone at ACIJ was surprised,” said Carmen Ryan, a coordinator for the organization. “In Argentina, you’re usually educated in the seventh grade about the disease, but we’re told a famous doctor had figured out how to prevent and treat it. We thought it was a ‘solved’ issue. But when we started researching, we discovered that Chagas is not at all solved. In fact, we learned that fewer than 1% of infected people in Argentina are treated.”
Ruth Oño is part of ¿De qué hablamos cuando hablamos de chagas? (Let’s Talk Chagas) – an organization advocating for people suffering from Chagas. She knows the disease only too well. She contracted Chagas by congenital (mother-to-child) transmission, but did not learn she had the disease until she was an adult. After her diagnosis, she was frightened because she has relatives who died from Chagas. She was also told there was a year-long waiting list for medication and she—like more than half of the patients being treated by her physician—was placed on that list.
Chagas is caused by the parasite Trypanosoma cruzi, which is transmitted via the feces of blood-sucking insects that live in cracks in the walls and roofs of houses and other buildings (although it also can be passed in other ways, such as from a pregnant woman to her fetus in utero, which occurs an average of 1,300 times per year). About 6 million people live with Chagas disease in Latin America, including 1.5 million-2 million in Argentina. Of those, it’s estimated that one-third will develop severe and sometimes life-threatening medical complications during their lives, such as heart disorders. Chagas can be prevented with simple methods such as filling crevices, replacing thatch with less permeable roofing materials and spraying indoors with insecticides. However, due in part to a misconception that the disease is prevalent only in rural areas, the government had not acted to prevent this disease. We now know that insect vectors and disease are increasingly common in urban and suburban areas as well.
Fortunately for Argentinians, the country’s independent audit agency, the AGN, was on the case—but needed the help of civil society actors to raise the visibility and impact of its audits.
“We have involved civil society in our work since 2002, when we were led by a pioneering president,” explains the current President of the AGN Jesús Rodríguez. “Under his leadership, we opened the office to the input of other organizations, the media and civil society.”
ACIJ learned that the AGN had conducted two performance audits on the government’s Chagas program, one in 2012 and another in 2018—which found that while some progress had been made, much more remained to be done. Allocated funds are insufficient and even monies that were set aside were not spent as planned—a hallmark of poor budget credibility. Among the results were limited staffing for the program and little coordination.
In June of 2019, ACIJ met with the AGN to discuss the latest audit report, encourage the agency to avoid stereotyping Chagas as a “rural poverty disease” and recommend more substantial input from civil society. The meeting exhorted the AGN to continue its monitoring of Chagas finances.
ACIJ then formed a coalition with medical practitioners and other civil society organizations, and partnered with the AGN to push the government to prioritize funding for Chagas prevention and treatment. The group made significant progress in building relationships with key government stakeholders—a significant accomplishment in light of two major challenges:
The first challenge was that government staff in charge of Chagas are also responsible for managing dengue, a disease that is much more prominent on the public health agenda. In addition, the previous administration had not considered Chagas an urgent priority. But the general elections in October 2019 installed a new administration and ACIJ and its coalition members began to forge new connections.
Coalition members were optimistic when they encountered Chagas experts on the new government’s team, and they made progress quickly. By March 2020, the request by ACIJ and nine other CSOs for a meeting with the Ministry of Health was granted. The team outlined the key recommendations from the audit reports. They were clearly persuasive: Ministry officials agreed to re-open 18 government regional offices responsible for Chagas control that had been closed or shifted to other priorities by the previous administration.
“We were quite happy,” recalls Francisco Rodriguez, who works on economic, social and cultural rights at ACIJ. “But then, the ministry was completely taken over by the COVID situation.”
COVID-19 is proving to be both a challenge and a potential long-term benefit for those with Chagas. On the one hand, the only clinics that will see Chagas cases are now focused on COVID. And there is a concern that funds allocated for Chagas will be diverted. At the same time, however, the pandemic could end up strengthening the capacity of those health facilities to provide the preventive medicine needed by Chagas patients, such as screening during pregnancy.
Another impact of the virus has been shutdowns and physical-distancing measures that prevent ACIJ and its coalition members from easily engaging with the new government officials. Fortunately, the administration didn’t drop the ball. Emails and Zoom sessions enabled dialogue, and the ministry began drafting a national action plan for Chagas, promising to share a draft for input by ACIJ and its allies.
Prior to COVID-19, the Ministry of Health had applied for and received a loan from a regional development bank, FONPLATA, to re-initiate the regional teams. “The focus will be on better execution, with more houses treated and more testing of pregnant women,” explains Jesús Rodríguez.
Jesús Rodríguez began as head of the AGN in mid-March, just as the pandemic hit the globe so hard. “Just imagine! It was the beginning of the lockdown in our country,” recalls Rodriguez. “As a team, we had only one face to face meeting, a presidential meeting, to work together before the lockdown started. Not all operations were digital, so we had to adapt.”
In collaboration with ACIJ and its allies, the AGN will launch an audit of the FONPLATA loan to assure the funds are fully spent. ACIJ will disseminate the results.
ACIJ and its nine allies are building broad-based support for the need to tackle Chagas. They are working to raise awareness about the extent and impact of the disease and the imperative to implement the audit recommendations. Through Twitter and Facebook campaigns, they hope to destigmatize the disease and encourage widespread acceptance that prevention and treatment are needed. So far, the Ministry of Health appears supportive and is joining their efforts. It co-sponsored a three-hour educational webinar with ACIJ partner ¿De qué hablamos cuando hablamos de chagas?. The ministry also has indicated it will work with its education counterpart to revisit the school curriculum, so students don’t get the impression that Chagas has been conquered.
In August 2020, the Ministry of Health announced the launch of a participatory process of regulation that will govern the management of Chagas. Minister Ginés González García declared his ministry’s “political commitment to revitalize strategies to address Chagas.”
Ryan said, “Pulling the coalition of organizations together around one agenda was hard. But we feel we’ve created good momentum moving forward on an agenda that had gone really, really silent.”
Eventually, Ruth was able to access the medicine she needs. After her struggle with the disease and the uncertainty of having to wait for medication, Ruth has a critical message for public health authorities. She urges, “That they inform themselves,” and “that they approach the communities that live with Chagas” because it’s so “important that there are training sessions on diseases that can remove ignorance.” She concludes, “Half the battle is ending the stigma and the government has an important role to play in spreading the word that Chagas is both preventable and treatable.”