Last Tuesday, April 14th, the date on which World Chagas Disease Day is celebrated, the Oswaldo Cruz Institute (IOC/Fiocruz) promoted the event 'Uniting to care for and treat: visibility of the problem of Chagas disease and hope with investment in research and innovation'.
Held in the auditorium of the National Council for Scientific and Technological Development (CNPq) in Brasília, the meeting brought together researchers, public managers, and patients with the goal of raising awareness of one of the world's most neglected diseases and reinforcing Brazil's commitment to eliminating it.
It is estimated that between 3 and 5 million Brazilians have the disease in the country, many still without a diagnosis or adequate treatment.
The initiative was promoted by IOC/FiocRuz, CNPq and the Ministry of Health, through the Department of Science and Technology (DECIT).
At the opening ceremony, the director of IOC Tania Araujo-Jorge, the event organizer, emphasized the purpose of the meeting.
"We need to raise awareness of Chagas disease and strengthen care efforts, highlighting the need for more research and innovation to eliminate this disease worldwide," he emphasized.
The president of CNPq, Olival Freire Júnior, presented data on research funding and recalled the legacy of Carlos Chagas, emphasizing the importance of continuous investment. He addressed research in immunotherapy, as well as advances in innovation, new medications, and faster diagnoses.
"Chagas disease has been a recurring theme in CNPq's activities, but this should not obscure the fact that budget instabilities have brought enormous difficulties to these same activities," he reflected.
Complementing the institutional vision, the president of CAPES, Denise Pires de Carvalho, highlighted that science is the pillar of national autonomy.
"There is no sovereignty without higher education, without science," Denise stated, arguing that investment in education and research is the foundation for patients to receive better care.
The presidents of CAPES and CNPq were present at the event. In the center, Severina da Silva, from the Chagas Association of Pernambuco. Photo: Marcelo Gondim/CNPq
Assistance to those affected was the highlight of the emotional speech by Severina Maria da Silva, from the Chagas Association of Pernambuco.
“I spent a lot of time sick. I was hospitalized several times. I only received my diagnosis at the Oswaldo Cruz Foundation. It’s a silent and forgotten disease. There needs to be qualified doctors who perform tests until they discover what the patient has,” said Severina, 96 years old.
Coming from Recife, she represented the resilience of the millions affected. On that occasion, she pleaded with the authorities not to forget those living with HIV/AIDS.
Meanwhile, hematologist Cristina Carrazone, coordinator of the "Those with Chagas are in a hurry" project, pointed out that time is a critical factor for those suffering from the complications of the disease.
According to Paulo Garrido, president of the Union of Public Health Science, Technology, Production and Innovation Workers of the Fiocruz (Asfoc-SN), the country needs to prioritize a project that is committed to caring for the population.
"Currently, state-level health meetings are being organized, aiming at the 18th National Health Conference, whose theme is the care of the people. We need to be active in this process," he commented.
One of the highlights of the event was the launch of the new phase of the Selenium Project, presented by the deputy coordinator Roberto Ferreira.
The clinical study aims to test the effectiveness of selenium supplementation combined with coenzyme Q10 in the treatment of chronic Chagas cardiomyopathy.
"The goal is to estimate the effectiveness of selenium as a therapy to reduce heart damage. It will be a multicenter study that aims to include up to 600 patients with the disease in different regions of Brazil."
He emphasized that this is a low-cost treatment with the potential to strengthen the Unified Health System (SUS).
The Selenium Project aims to enhance the quality of life of patients. Photo: Marcelo Gondim/CNPq
The Ministry of Health announced More than R$ 8 million will be invested in the project. The expectation is that the research will generate more robust and representative scientific evidence across different patient profiles.
According to the Secretary of Science, Technology and Innovation in Health, Fernanda De Negri, scientific advances are essential to expand therapeutic options and ensure timely care within the Brazilian public health system (SUS).
"Chagas disease still affects many Brazilian families, especially in more vulnerable contexts. Therefore, investing in research in this area is also a commitment to equity and to promoting more dignified and accessible care for all," she emphasized.
The Ministry also reported that it supports the possible incorporation of selenium-based treatment into the SUS (Brazilian Public Health System).
Click here To learn more about the Project.
The meeting was also marked by moving accounts from people living with Chagas disease and working in support associations in different regions of the country.
Nancy Costa, Severina da Silva, Nilva Belo, Elaine Gomes, and Roberto dos Santos participated.
In a moving roundtable discussion, people with Chagas disease shared their stories. Photo: Marcelo Gondim/CNPq
Nancy emphasized the importance of acceptance and explained that she is part of a movement fighting to bring the disease out of the shadows and provide emotional support to those diagnosed.
Nilva recounted a story of emotional overcoming. She recalled falling into depression upon receiving the diagnosis. Later, after finding support and adequate information, she resumed her life and today is the president of an association, focusing on health education and protecting women of childbearing age to prevent congenital transmission.
Elaine shared her journey as a heart transplant recipient over 10 years ago. She was diagnosed by chance at age 27 while trying to get a medical certificate to join a gym. She highlighted the crucial role of the Brazilian public health system (SUS) in her treatment and transplant.
Severina recounted the stigma and fear she felt upon discovering the disease. Initially, she isolated her own cutlery and glasses for fear of infecting a family member (which is a myth). She lost many family members to the disease and highlighted that, in the past, the correct diagnosis was not made. Today, she celebrates the care she receives from doctors and the importance of being monitored.
Roberto, who has severe Chagas disease, recounted the critical moment when he discovered he urgently needed a pacemaker. After successful surgery, he became an active activist and currently presides over the association in the Sertão do Pajeú region (PE), working to ensure that people in the region get tested and overcome their fear of the diagnosis.
Last Tuesday, April 14th, the date on which World Chagas Disease Day is celebrated, the Oswaldo Cruz Institute (IOC/Fiocruz) promoted the event 'Uniting to care for and treat: visibility of the problem of Chagas disease and hope with investment in research and innovation'.
Held in the auditorium of the National Council for Scientific and Technological Development (CNPq) in Brasília, the meeting brought together researchers, public managers, and patients with the goal of raising awareness of one of the world's most neglected diseases and reinforcing Brazil's commitment to eliminating it.
It is estimated that between 3 and 5 million Brazilians have the disease in the country, many still without a diagnosis or adequate treatment.
The initiative was promoted by IOC/FiocRuz, CNPq and the Ministry of Health, through the Department of Science and Technology (DECIT).
At the opening ceremony, the director of IOC Tania Araujo-Jorge, the event organizer, emphasized the purpose of the meeting.
"We need to raise awareness of Chagas disease and strengthen care efforts, highlighting the need for more research and innovation to eliminate this disease worldwide," he emphasized.
The president of CNPq, Olival Freire Júnior, presented data on research funding and recalled the legacy of Carlos Chagas, emphasizing the importance of continuous investment. He addressed research in immunotherapy, as well as advances in innovation, new medications, and faster diagnoses.
"Chagas disease has been a recurring theme in CNPq's activities, but this should not obscure the fact that budget instabilities have brought enormous difficulties to these same activities," he reflected.
Complementing the institutional vision, the president of CAPES, Denise Pires de Carvalho, highlighted that science is the pillar of national autonomy.
"There is no sovereignty without higher education, without science," Denise stated, arguing that investment in education and research is the foundation for patients to receive better care.
The presidents of CAPES and CNPq were present at the event. In the center, Severina da Silva, from the Chagas Association of Pernambuco. Photo: Marcelo Gondim/CNPq
Assistance to those affected was the highlight of the emotional speech by Severina Maria da Silva, from the Chagas Association of Pernambuco.
“I spent a lot of time sick. I was hospitalized several times. I only received my diagnosis at the Oswaldo Cruz Foundation. It’s a silent and forgotten disease. There needs to be qualified doctors who perform tests until they discover what the patient has,” said Severina, 96 years old.
Coming from Recife, she represented the resilience of the millions affected. On that occasion, she pleaded with the authorities not to forget those living with HIV/AIDS.
Meanwhile, hematologist Cristina Carrazone, coordinator of the "Those with Chagas are in a hurry" project, pointed out that time is a critical factor for those suffering from the complications of the disease.
According to Paulo Garrido, president of the Union of Public Health Science, Technology, Production and Innovation Workers of the Fiocruz (Asfoc-SN), the country needs to prioritize a project that is committed to caring for the population.
"Currently, state-level health meetings are being organized, aiming at the 18th National Health Conference, whose theme is the care of the people. We need to be active in this process," he commented.
One of the highlights of the event was the launch of the new phase of the Selenium Project, presented by the deputy coordinator Roberto Ferreira.
The clinical study aims to test the effectiveness of selenium supplementation combined with coenzyme Q10 in the treatment of chronic Chagas cardiomyopathy.
"The goal is to estimate the effectiveness of selenium as a therapy to reduce heart damage. It will be a multicenter study that aims to include up to 600 patients with the disease in different regions of Brazil."
He emphasized that this is a low-cost treatment with the potential to strengthen the Unified Health System (SUS).
The Selenium Project aims to enhance the quality of life of patients. Photo: Marcelo Gondim/CNPq
The Ministry of Health announced More than R$ 8 million will be invested in the project. The expectation is that the research will generate more robust and representative scientific evidence across different patient profiles.
According to the Secretary of Science, Technology and Innovation in Health, Fernanda De Negri, scientific advances are essential to expand therapeutic options and ensure timely care within the Brazilian public health system (SUS).
"Chagas disease still affects many Brazilian families, especially in more vulnerable contexts. Therefore, investing in research in this area is also a commitment to equity and to promoting more dignified and accessible care for all," she emphasized.
The Ministry also reported that it supports the possible incorporation of selenium-based treatment into the SUS (Brazilian Public Health System).
Click here To learn more about the Project.
The meeting was also marked by moving accounts from people living with Chagas disease and working in support associations in different regions of the country.
Nancy Costa, Severina da Silva, Nilva Belo, Elaine Gomes, and Roberto dos Santos participated.
In a moving roundtable discussion, people with Chagas disease shared their stories. Photo: Marcelo Gondim/CNPq
Nancy emphasized the importance of acceptance and explained that she is part of a movement fighting to bring the disease out of the shadows and provide emotional support to those diagnosed.
Nilva recounted a story of emotional overcoming. She recalled falling into depression upon receiving the diagnosis. Later, after finding support and adequate information, she resumed her life and today is the president of an association, focusing on health education and protecting women of childbearing age to prevent congenital transmission.
Elaine shared her journey as a heart transplant recipient over 10 years ago. She was diagnosed by chance at age 27 while trying to get a medical certificate to join a gym. She highlighted the crucial role of the Brazilian public health system (SUS) in her treatment and transplant.
Severina recounted the stigma and fear she felt upon discovering the disease. Initially, she isolated her own cutlery and glasses for fear of infecting a family member (which is a myth). She lost many family members to the disease and highlighted that, in the past, the correct diagnosis was not made. Today, she celebrates the care she receives from doctors and the importance of being monitored.
Roberto, who has severe Chagas disease, recounted the critical moment when he discovered he urgently needed a pacemaker. After successful surgery, he became an active activist and currently presides over the association in the Sertão do Pajeú region (PE), working to ensure that people in the region get tested and overcome their fear of the diagnosis.
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