Chagas: Caught Between Neglect and Opportunity
By the Global Chagas Disease Coalition
Today, 14 April, International Chagas Day, is an appropriate day to talk about Noelia, a little girl who was born ten years ago in the Chaco Tarijeño region of Bolivia. “It's a cold world out here!” were the words with which Demetrio—the nurse who attended her birth—welcomed Noelia, alluding to the difficulties she would face. She was born into an indigenous community threatened by Chagas disease. Even so, she was lucky in that, thanks to a pilot project under way in the province where she lives, her Chagas infection was diagnosed. Elsewhere, newborn babies are not so lucky, and in many cases the disease is not detected. Despite progress in recent years, the risk of vertical transmission of Chagas disease, from a mother to her child, remains very high and, access to diagnosis and treatment of the disease is still not guaranteed.
To mark this important day, we want to reflect—as we do all year round—on why, in 2015, 99% of patients with Chagas disease still lack access to diagnosis and treatment. Why does a disease that affects around 6 million people and claims 10,000 lives every year, continue to endanger another 70 million people who live at risk of infection?
Chagas represents a public health crisis that is both silent and silenced. The problem is silent because the infection is asymptomatic for many years in one-third of those infected and never causes symptoms in the other two-thirds. It is silent because the disease primarily affects only the poorest and most vulnerable people, communities which have no voice that they can use to be heard or to claim their right to treatment. And the crisis can be described as silenced because the magnitude of the problem remains unknown and there is no consensus on the number of people affected.
Progress in Recent Years
In the area of disease control, a great deal of progress has been made since the 1990s. Efforts focused on vector control have achieved good results and have even managed to interrupt transmission in some regions. Good progress has also been made in the control and screening of blood banks.
The greatest remaining challenge is the prevention of congenital transmission of Chagas disease. In spite of the fact that between 3% and 5% of women infected with Chagas disease transmit the infection to their babies, screening and treatment of newborn babies is still not a widespread practice in the countries where the disease is found.
The Political Will to Fight Chagas Disease
Another aspect of the problem that has been consistently neglected in the initiatives undertaken to combat Chagas disease is access to diagnosis and treatment for infected patients. In 2010, the WHO recommended that affected countries should incorporate the care of patients with Chagas disease into their national health systems. In 2012, with the London Declaration on Neglected Tropical Diseases, the commitment to fight neglected diseases was confirmed and a roadmap outlining the fight against Chagas up to 2020 was presented, a combination of events that heralded greater commitment on the part of the key actors to fighting Chagas disease. Today, with only five years to go before the target date, the results achieved in terms of treatment are inadequate. Political commitment must be translated into concrete actions that will increase the number of patients receiving treatment.
At the current rate, it will take years before all patients with Chagas disease are treated. Isolated interventions and piecemeal efforts that lack strong leadership from the governments of the countries affected will continue to yield disappointing results. The progress made in the control of the disease has shown that joint collaborative efforts achieve results. The example of the initiative led by the Pan American Health Organization to strengthen efforts to control Chagas disease has shown that it is possible to translate governments’ prioritization of an issue into additional resources, greater institutional participation, and an expansion of activities. On the basis of that experience, the elements required would appear to be a clear common goal, the necessary data to inform decisions, and a thorough understanding of the disease, both quantitative and qualitative. If we want to see a difference within the next five years, we must seek to radically change the way we are tackling the problem of the diagnosis and management of Chagas disease.
There are five main challenges:
1. To translate political will into concrete solutions. More resources for integrated treatment and control programmes, research efforts, and for developing new solutions.
2. To maintain and expand disease control efforts, taking into account the new epidemiological scenarios.
3. To ensure that all those at risk are screened and to guarantee access to treatment for all patients.
4. To research and develop new therapies that are easier to administer and new tools for the diagnosis and follow-up of patients with the disease.
5. To undertake studies to obtain more reliable data on prevalence and put in place better systems for detecting, notifying and reporting cases.
The only way to alleviate the human suffering caused by Chagas disease is to join forces in a broad alliance to fight the disease. This is the dream of the Global Chagas Disease Coalition, an open, ambitious and collaborative alliance which, by promoting collaboration, joint initiatives and the exchange of knowledge and experience, mobilizes capacities and resources to improve access to diagnosis and treatment and provide greater incentives for research and the development of effective solutions.
There are reasons for hope. One inspiring examples is the leadership of the Indian Government in the fight to eliminate kala azar, a neglected disease endemic in that country. Using a common agenda to concentrate the efforts of all the partners in the initiative, in just a few years they achieved a surprising increase in the number of patients treated. A similar initiative is needed to scale up the diagnosis and treatment of Chagas disease. Chagas disease is a public health issue and the millions of affected patients have a right to treatment. If that alone were not sufficient reason for action, it is also a money-saving investment that improves quality-of-life and reduces the productivity losses caused by the disease. Investing in treatment is certainly a wise decision and an unfulfilled commitment.
The Latin American countries must play a central role in leading this effort since Chagas disease is a public health problem in that region. What is needed is a strategy that unites the efforts of all those working to combat the disease, such as the one proposed by the Global Chagas Disease Coalition, guided by a common, patient-centred roadmap. Finally, the International Federation of People Affected by Chagas Disease (FINDECHAGAS) is a partnership that will surely play a catalytic role in this setting, as will other initiatives.
This is our ambition—that in another 10 years Noelia may look around her and think, “Now, at last, things have changed!”