World Health Assembly to address decision to establish International Day of People Affected by Chagas Disease

Publicação: 8 de March de 2019

The “World Day” is an important symbol to spotlight the struggle of people living with the disease in the world and an incentive to control the disease

Approximately 12 thousand people die every year from causes related to Chagas’ disease. In Brazil, around 6 thousand people die every year due to chronic complications

Chagas’ disease has the highest rate of sickness and death among all neglected diseases in Brazil. In 2017, for example, the Country accounted for 70% of all deaths by Chagas’ disease in the world, making this disease remain as a critical public health problem. Neglect is seen in the lack of investment in research, both to control transmission of the Trypanosoma cruzi protozoan in its different forms (vectoral, oral, mother-to-child, blood) as for diagnostic and treatment of the infection in affected people, in the acute and in the chronic phases. Lack of knowledge about the disease is a big problem. According to a study developed by the Oswaldo Cruz Foundation, in partnership with Médecins Sans Frontières (MSF), health professionals and the general population know little about the disease. In addition, the migration of infected people from Latin American countries, including Brazilians, increases the risk of transmission to non-endemic areas, another obstacle in facing this absolutely neglected disease in terms of public policies.

MSF analyst in humanitarian matters, Marina Siqueira, acknowledges that there is a great lack of knowledge about this disease, which is directly reflected in the lack of official statistical figures on the matter. “Many people live with the disease without knowing their own condition, some of them even die without the cause of death being related to Chagas’ disease. Data on morbidity are based on estimated numbers, since people’s access to diagnostics is very low”, he laments. According to her, to change this reality it is necessary to increase the knowledge of health professionals and health managers about the disease, with periodic training, as well as of the general population. “It is necessary to create policies to increase access to diagnosis, in addition to integrating diagnosis and treatment in the network of basic care services, as well as to incorporate diagnosis in prenatal exams, as already happens with syphilis, HIV and viral hepatitis, for example. It is also fundamental to prioritize the disease in public health policy agendas and strengthen the active search for people with the disease in its chronic phase”, he points out. The 16th National Health Conference becomes a great opportunity to build agendas that approach the theme of Chagas’ disease.

The director of the Chagas program at Drugs for Neglected Diseases Initiative (DNDi), Dr. Sergio Sosa Estani, points out that data on the disease vary widely, but the Pan American Health Organization / World Health Organization (PAHO/WHO) estimated that there are about 6 million infected people in 21 Latin-American countries. Of this total, less than 10% are diagnosed and a minority receives treatment. “The lack of information and data is a major challenge and contributes to this, because it is impossible to know exactly what the burden of the disease is”, he admits. In addition, the disease impacts the community, since the complications associated with the disease often prevent people from working.

Professor Dr. Alberto Novaes Ramos Jr. from the Federal University of Ceará (UFC) admits that in fact, the dimensions of information, communication and health education on Chaga’s disease are historically very fragile. “The disease is not recognized by the society and we cannot echo the sad reality of this disease as a public health problem”, he adds. According to him, incredibly, aspects of vector insects (triatomines or “barbers”, as they are known in Brazil) are more widespread and localizable, for example, in informational and educational materials than those of the human disease itself. “There are few specific, good quality materials available to be worked on in the municipalities. There are no national or state campaigns focused on Chagas’ disease. A critical example is that epidemiological data showing more than 6 thousand annual deaths by the disease and an estimated 3 million infected Brazilians have no impact on the media, the academy, research funders and national or international organizations. Outbreaks of oral transmission draw attention, but they fall into oblivion shortly after. What happened to people who became infected? It’s not totally known”, he mourns.

Trying to change this reality, in November 2018, members of the Chagas Clinical Research Platform and the Chagas Global Coalition, met in Santa Cruz de la Sierra, Bolivia, signed a document aimed at governments, international organizations and donors, establishing the priority demands to advance the fight against the disease. The Santa Cruz Letter determines four urgent measures to achieve the control and elimination of Chagas’ disease as a public health problem: to increase access to diagnosis and full treatment of the disease within the health systems; increase investment in research and development to obtain new, safer and more effective diagnostic and therapeutic tools; improve disease surveillance by implementing mandatory reporting of chronic cases; and to officially establish the International Day of People Affected by Chagas Disease, on April 14 which aims to help removing the disease from oblivion.

International Day of People Affected by Chagas Disease

The World Health Assembly, which will be held in May, will address the decision to institute April 14 as the “International Day of People Affected by Chagas Disease”. To Dr. Javier Sancho, Coordinator of the Global Coalition of Chagas Diseases of the Global Institute of Health of Barcelona (ISGlobal), is a novelty to be celebrated and shared, especially with the associations of people affected by the disease, who claim the institution of this date long time.

Marina Siqueira says that creating an official global day for people affected by the disease represents an important step towards changing its past of neglect and underreporting, increasing awareness of Chagas disease as a global, current and priority public health problem. “We believe that including of this Day in the official WHO agenda will be a simple and effective way of increasing the level of information that is available both for the population and for health managers and professionals, keeping them up to date on the issue and its importance, reinforcing that it is an avoidable and treatable health problem”, he emphasizes. Dr. Sergio Sosa Estani says World Days are important for giving visibility to diseases and fighting neglect. “This is a request from the International Federation of Associations of People Affected by Chagas Disease (FindeChagas), which has full support from DNDI and other organizations”, he adds.

Visibility to people affected by the disease

In addition to the creation of the International Day, it is also necessary to put the subject in the different spheres of society. “It is important to ensure that the curricula of the country’s medical schools address the disease as a current public health problem, not from the past. Besides this, scientific societies, health authorities in the public and private sectors, as well as international agencies, must include Chagas disease in the public agenda”, said Dr. Sergio Sosa Estani.

Marina Siqueira points out that it is still a very big challenge to make visible the millions of people affected by the disease, since there is a generation of people excluded from the health system due to lack of access to timely diagnosis. Knowing their situation is the first step in preventing suffering and the most severe complications that compromise these people’s quality of life. To her, it is necessary to have constant awareness, so that the illness is no longer forgotten and this way, policies are aimed at the best care of the affected people. “There is a false perception that Chagas disease is an extinct disease and as this way, there is very little investment in continuous training for professionals and little or no approach to the topic in university courses in the health area. In order for there to be a real change, it is necessary to stimulate the promotion of training; and training both inside and outside university courses, not only for health professionals, but also for government authorities. Without a powerful political commitment, this scenario will continue”, he notes.

Investment in resources for R&D in Chagas disease

Chagas disease is one of the diseases that does not arouse much interest for the market because it does not give a lucrative feedback. Unfortunately, this is a vicious circle that is repeated for all so called neglected diseases. “Since they are not a lucrative market for the pharmaceutical and diagnostic industry, there is virtually no innovation. The result are old drugs that have severe limitations, such as low tolerability and efficacy, and long-term treatments, among others”. Sergio Sosa Estani.

A survey held in 2015 revealed that the three infections with kinetoplastids (Chagas’ disease, Leishmaniasis and African Trypanosomiasis) received only 4% of the entire global R&D resource. In addition, among these three diseases, Chagas received the least resources (16% of all three diseases). That is, the level of resources invested in R&D for this specific disease is very low, irregular and incompatible with the burden of disease, which affects millions of people. Increasing this investment is essential for developing better and simpler drugs and medical tools that can drive diagnostic and treatment strategies. For this change to happen, global and regional strategies on Chagas’ disease need to focus more on the R&D axis, which is rarely mentioned. This year’s G-Finder’s report on investment in neglected diseases R&D has pointed out that Chagas disease, for which Brazil was the second largest funder of research for five years, was cut in 2017 up to 74%.

Felipe de Carvalho, Brazil’s coordinator of the MSF Access to Medicines Campaign, calls for international donors to dedicate more resources to R&D in Chagas’ disease, and for multilateral organizations, such as the WHO, to promote coordination to define R&D priorities, making the investments be focused on the greater needs of the affected people. “There are good examples that it is possible to conduct important research for Chagas’ disease by mobilizing the scientific community, governments and industry sectors, as has been done through DNDi’s efforts. However, these initiatives need to multiply and, in a broader scope. We need innovation systems to be more driven by health needs than by market needs, otherwise we will continue to be faced with diseases that are a major health priority but a low priority for R&D”, he warns.

The Date

The Associations affiliated with FindeChagas chose April 14 as “International Day of People Affected by Chagas’ Disease”, precisely because it was the date on which Brazilian researcher, Dr. Carlos Justiniano Ribeiro Chagas, 109 years ago, communicated his discovery to the scientific community. This date has been used by FindeChagas to develop better strategies to fight the disease. The creation of a World Day needs to be seen by WHO member states as a historic opportunity to transform the reality of millions of people and their families and communities.

The Federation

FindeChagas was officially established in October 2010 and is currently composed by over 20 associations spread across countries all around the world (Argentina, Australia, Bolivia, Brazil, Colombia, Spain, USA, Italy, Mexico, Switzerland and Venezuela).