[English]
The people affected by Chagas disease will claim this 14th of April as World Chagas Day in the hope of increasing global awareness, and building on the progress already made against this disease, which has been neglected for more than one century.
11 April 2019.
The International Federation of Associations of People Affected by Chagas disease (FINDECHAGAS) has launched an online petition through the platform change.org (Link) in support of the official declaration of April 14th as their World Day. This proposal will be tabled at the 72nd World Health Assembly, to be held in Geneva at the end of May 2019. The particular date has been chosen because on that same day, 110 years ago, the Brazilian doctor Carlos Chagas confirmed the first case of the disease in a child, called Berenice Soares.
The official recognition of this anniversary in the global calendar of World Days will raise the visibility of this global health challenge, which forms part of the list of neglected tropical diseases, according to the classification of the World Health Organization (WHO). FINDECHAGAS aims to engage governments and health decision makers to encourage them to take sustainable political actions in order to overcome numerous barriers regarding access to diagnosis and treatment, as well as to increase visibility and awareness about the stigmatization and discrimination suffered by people affected by the disease.
On behalf of the current board of FINDECHAGAS, Elivra Hernández, (from the Mexican Association of People Affected by Chagas disease, AMEPACH), expressed today, from her home town of Veracruz that: “Most of the people living with Chagas have been ignored and invisible to the rest or the world, ever since the discovery of this disease”.
In order to understand the scope and magnitude of this challenge – around 8 million people suffer from Chagas disease, mainly in Latin America, but also in other regions of the world, such as the United States, Canada, Europe and the Western Pacific. It is estimated that 65 million people are also at risk of Chagas disease. Furthermore, the majority of patients have no access to diagnosis and comprehensive treatment in each phase of the disease.
The disease is mainly transmitted to humans through the faeces of insects (known as kissing bug, or babeiros, vinchucas, chinces, pitos, depending in which endemic area they are present) which harbor the parasite Trypanosoma cruzi. Other means of transmission are the ingestion of contaminated food or liquids; mother to child transmission during pregnancy or childbirth, and blood transfusion or organ transplantation.
Despite the high prevalence of disease carrying vectors in some regions, and the risk of serious cardiac and digestive complications which occurs in around 30% of cases, Chagas disease has not been a priority on the global health political agenda. There are still only two drugs to treat the disease: Benznidazole and Nifurtimox, both developed around half a century ago. They are highly effective in treating children and during the early stages of the disease, and also in the treatment of women of reproductive age to prevent transmission to their children. Although less effective in adults, these antiparasitic treatments and others treatments for specific complications associated with the disease, can significantly improve the quality of life of people with Chagas.
Recent studies of treatment regimes of shorter duration have shown a high level of efficacy and could lead to a scaling up in the level of access to the drugs. But along with this what is really needed is increased investment in research, and to improve access and supply of drugs in the different countries where people affected.
“After more than one century of neglect, now is this is the time to put an end to the obscurity surrounding the people affected by Chagas disease. A World Day means an opportunity to stand up and take the word. We have a lot to speak about. This is the time to hear our voice. We request the support of all the people to sign the petition to declare April 14th as the World Day of the people affected by Chagas disease. In addition we ask governments for their support to our request at the World Health Assembly”, stated Elvira Hernández, from FINDECHAGAS.
