Building momentum on the recent Declaration and PSA of the Global Chagas Disease Coalition, as well as a PLOS NTDs editorial, “An Unfolding Tragedy of Chagas disease in North America,”  the Sabin Vaccine Institute, Drugs for Neglected Diseases initiative (DNDi), the National School of Tropical Medicine at Baylor College of Medicine, Doctors Without Borders/Médecins Sans Frontières, Global Chagas Disease Coalition, Research!America, ASTMH and Pan American Health Organization (PAHO) recently hosted an event at PAHO, “Advancing Life-Saving R&D Innovations for People Living with Chagas Disease – The Silent Killer.” This event coincided with the American Society of Tropical Medicine and Hygiene’s (ASTMH) annual meeting, in which experts presented the latest research, innovations and programs advancing solutions for diseases of poverty.

At the event, speakers representing research, medical and advocacy efforts to reduce the threat of Chagas disease shared insights from their ongoing work and identified concrete steps that can be taken to eliminate widespread suffering. Here are some of their observations:

Dr. Peter Hotez, president of the Sabin Vaccine Institute and founding dean of the National School of Tropical Medicine at Baylor College of Medicine:

“It’s the most important disease you’ve never heard of.” Chagas disease afflicts at least 10 million people and as many as 300,000 pregnant women – including 40,000 pregnant women in North America. Chagas “cluster[s] in areas of intense deprivation” and has therefore been almost completely ignored despite it being one of the most common afflictions of people living in profound poverty.

Dr. Isabela Ribeiro, head of Chagas Clinical Program, DNDi:

“99.9 percent of those in the world today [with Chagas] are … not receiving treatment, an absolutely unacceptable situation.” Even though consensus since the 1990s has held that children should have treatment, “until two years ago there was no pediatric formulation available and registered.” Despite a decades-long lag in efforts to control Chagas, “there has been now some progress in advances in research and development, both in new treatments, vaccines and also in diagnostics.”

Dr. Rachel Marcus, cardiologist and medical director of LaSocha, an American society of Chagas:

Through screening at the Bolivian mobile consulate program, LaSocha has “found 29 percent seropositivity for Chagas in all tested individuals, and 50 percent seropositivity in people from highly endemic regions of Bolivia.” They are also aware of two cases of congenital Chagas in Northern Virginia, and two patients who are currently being evaluated for heart transplantation. LaSocha will continue pursuing testing, education initiatives and research to generate a “wider acceptance that this is a medical problem worthy of attention.”

Sonia Tarragona, director general of Mundo Sano Foundation; Representative of the Global Chagas Disease Coalition:

“Not everything is bad news.” Positive developments have taken place over the past couple of years, including the World Health Organization’s (WHO) roadmap to control and eliminate neglected tropical diseases (NTDs), the 2012 London Declaration and the 66th World Health Assembly’s landmark resolution on all 17 NTDs. “This context represents an unprecedented opportunity to help define a people-centered agenda that boosts access to exciting health tools and treatments supporting” the integrated control and elimination of Chagas disease and prevention of transmission. A global, collaborative approach can lead to the “best results.”

Dr. Luis Gerardo Castellanos, epidemiologist at PAHO:

Latin American countries have taken concrete actions over the last 40 years to treat children in endemic areas and halt blood borne transmission. Now, as “vector control has significantly contributed to the halt of the occurrence of new cases, almost all 21 endemic countries in Latin America currently screen 100 percent of all blood before donation occurred.” Still, more than five million cases still afflict the region. To make sure that progress continues, “PAHO is tirelessly working with countries to improve case finding and documentation … also making efforts to secure free access to treatment with either of the two recommended medications in the market.”

Jenny Sanchez, LaSocha, US Chagas disease patients association:

How doctors should treat Chagas patients with other diseases, like diabetes and arthritis, and how to treat pregnant women, must be answered. We must also “create awareness. Not only the medical part but also among the students that are going to medical school, nursing school and in the population in general.” In addition to global alliances among the scientific community, “it is also a global movement about patients.” Patient associations have formed worldwide and united under the International Federation of Chagas Patients. “We want answers, and this is the time to have [them].”

Thanks to all for a great event! We encourage you to watch the full remarks here:

Watch live streaming video from paho at livestream.com

Photo credit: Drugs for Neglected Diseases initiative (DNDi)