Frequently Asked Questions
45. Why is Chagas disease considered a "silent" disease?
Chagas is called a silent disease for three reasons:
First, because major actors such as Latin American governments, pharmaceutical companies, international bodies and civil society (non-government organizations) have not done enough to solve the problem of Chagas disease.
Second, Chagas is called a silent disease because the people infected rarely show the symptoms of infection. Around one third of them will actually develop the disease. Then, very often the victim dies without even knowing the exact problem.
Finally, patients are generally socially, politically, and economically disenfranchised due to poverty and remoteness, with little or no political voice.
46. Why is there so little political interest?
The interest in the political world has largely been on vector control programs, with little interest or even acknowledgment of the need to treat patients.
47. Where have efforts been put at national level?
National government efforts have been put on prevention activities, such as vector control. The need for new treatments and diagnostics is starting to be acknowledged.
48. Why are so few pharmaceutical companies interested in Chagas disease?
Chagas disease mainly affects the poorest communities in Latin America, which do not represent a profitable market for pharmaceutical companies.
49. What is the social-economical profile of the patients with the Chagas disease?
The poorest of the poor. Most live in remote rural areas with limited access to healthcare and education.
50. Why do we not have a medical consensus on treatment with the existing drugs?
Current therapy for Chagas disease is limited to two drugs, nifurtimox and benznidazole, which are primarily used to treat acute and early chronic infections in children. The evidence with regards to treatment of adults and the indeterminate stage is conflicting, and there is no available evidence to support therapeutic use for symptomatic chronic disease. Even in children, who are known to better tolerate treatment with these compounds than adults, the cure rate is only around 60-70%.
51. What has DNDi done to address the lack of medical consensus with regards to Chagas treatment?
DNDi organized a set of meetings in 2006 to seek advice from experts on specific needs for new treatments in order to develop a drug development portfolio for Chagas' disease. Since then, DNDi has worked to strengthen its Chagas portfolio, and is conducting research in all the phases of drug development for Chagas disease. In the short term, DNDi and LAFEPE are working together to develop a pediatric formulation of benznidazole, which will be available in 2010. DNDi is also working on clinical development of azoles and other drug combinations.
52. What is the role of the WHO and the PAHO in the fight against the Chagas disease?
The role of the WHO and PAHO is to increase rapid-response health interventions to control and eliminate neglected infectious diseases, to strengthen national and local health systems, particularly information systems, and to adopt intersectorial and interprogrammatic approaches to address the social determinants underlying these diseases.
PAHO is expected to play a fundamental role through its ongoing work in mapping the incidence of these diseases in the Americas. The mapping helps pinpoint problems with greater precision while identifying gaps in information and action. PAHO will also spearhead technical cooperation efforts and provide expertise to support the development of national and local plans for control and elimination of these diseases.
53. Why is the patient's mobilization around the Chagas disease so weak?
As Chagas disease primarily affects people from poor, rural and remote areas across 21 endemic countries, it is difficult for patients to collaborate and form the critical mass needed to develop a strong political voice.
54. Are medical staff in endemic and non-endemic areas prepared to treat Chagas disease?
No. Chagas disease is minimally in medical training programs. As a result, only a small number of doctors have adequate knowledge of Chagas disease.
55. What causes Chagas disease to be called a vicious cycle?
First, as current estimates of Chagas disease prevalence rates are based on incomplete data, the scope of treatment needs is not evident. Without up-to-date, evidence-based reporting of disease prevalence and patient needs, there is little incentive to engage in research and development for new drugs and diagnostics. Investments to support targeted epidemiological studies are needed to generate a more accurate estimate of Chagas disease prevalence and incidence in Latin America, which can then stimulate the development of new health tools for Chagas disease.
The second vicious cycle refers to the cycle of poverty. Chagas affects predominantly poor populations, and results in significant disability that often leads to unemployment, decreased earning ability and increased costs in order to access treatment. As a result, Chagas disease patients often remain poor and they and their families continue to live in conditions that promote the spread of the disease and perpetuate this cycle.
56. What has to be done in 2009?
In 2009, as we mark the 100th anniversary of the discovery of the disease by Carlos Chagas, we must take advantage of the political momentum surrounding the disease and create an opportunity to raise awareness about the challenges facing Chagas patients. The imbalance between the disease burden and the priority level on the global health agenda must be redressed.
DNDi offers one possible solution to the lack of safe, effective, affordable and adapted drugs for Chagas patients. But in order to move the plight of Chagas patients to the top of the global health agenda, a much larger movement, encompassing the public sector, private industry (pharma, biotechs), philanthropists, academia, international organizations (WHO, PAHO) and NGOs is needed. New initiatives must be also developed and funded now in order to yield positive results in the years ahead, and to end the cycle of neglect for Chagas patients.
