9,000 children are born with this neglected disease. With the resources now at hand, mother-to-child transmission can be eliminated
This is the goal of a campaign supported by the WHO and Unicef
“All babies inherit something from their moms. Florencia will have her hair; Pedro, her nose; Marcos will inherit her generosity. But Ana was to receive Chagas disease if her mother hadn’t been treated before becoming pregnant.” These examples are the introduction to the Mundo Sano campaign video, presented last Tuesday at the Madrid seat of the Ibero-American General Secretariat (Secretaría General Iberoamericana — SEGIB), the purpose of which is to remind that this disease does not have to be an inevitable inheritance any more.
Until not long ago, for thousands of children, inheriting Chagas disease seemed something as unavoidable as inheriting their mother’s emotions, skills and even hair color. At present, eliminating this inheritance for good is a reality thanks to effective diagnosis and treatment now available, especially to younger children and childbearing age females. However, 9,000 children are still born with the infection every year because of mother-to-child transmission. This means that over the next hour, at least one more child will be born with Chagas, although more precise information is yet to be obtained on the actual reach of this neglected disease. The objective is, then, to have zero babies with Chagas by 2030.
“The good news is that we can treat and cure children and their moms.” Doctor Silvia Gold, president of Mundo Sano Foundation, is well aware of the fact that the word “cure” has been subject to scientific controversy when applied to this disease. But the evidence of treatment effectiveness, above all in children and youngsters, leaves no room for doubt. “Therefore, let’s dare say that Chagas can be cured when the affected individuals are diagnosed and treated early enough,” she insists.
The #NingúnBebéConChagas (#NotASingleBabyWithChagas) campaign focuses on mother-to-child transmission control, and it is aligned with strategies led by the World Health Organization (WHO) and the Pan American Health Organization (PAHO). And it is aimed at health goals achievable by 2030, as set out in the Sustainable Development Objectives (SDO).
The fight against this disease is experiencing an optimistic stage. Although not without caution, as the estimation of eight million affected people around the world, represents a huge challenge, mainly in Latin America, home to the transmitting insect. “How is it possible that with so many million people suffering it, Chagas has never been a priority in Latin America’s political agenda? This has to be changed,” said Rebeca Grynspan, SEGIB general secretary, at the campaign presentation holding back her tears after watching the campaign video. “This is the second time I am moved to tears seeing this,” she acknowledged.
With a hopeful tone, the video calls to consider Chagas disease not as an illness rampant in remote areas, but as a global reality. Its footprint has extended beyond rural environments and reached urban areas. And aside from endemic countries, the disease is now present in many world regions, mainly in the USA with some 300,000 affected people and in Spain with 50,000 to 100,000 cases.
Marcelo Abril, CEO, Mundo Sano, explains the optimism at their organization: “We are facing a great opportunity, now that diagnosis and treatment tools are available, scientific consensuses have been reached, and we have clinical guides endorsed by the WHO, which demonstrate that the treatment is working, particularly in children, young people and childbearing-age females.”
“And also, women can spearhead our efforts to increase diagnosis and treatment for all affected individuals in their communities,” adds Silvia Gold.
This is not “other people’s” disease
The pharmaceutical group that supports Mundo Sano, with 25 years existence involved in the fight against Chagas, has made available to affected countries the pediatric formulation of benznidazol, one of only two drugs available to fight this disease (the other is nifurtimox). In 2017, benznidazol was first registered in the US following its approval by the regulatory agency of that nation, an event that was then considered an aid to attract greater attention to the disease and to provide access to treatment in affected countries.
Being this a Latin American reality “that has suffered the stigma of invisibility and silence,” Rebeca Grynspan expressed her satisfaction for the fact that “the Ibero-American home, that SEGIB is” was the place to launch a campaign showing that Chagas is no longer “other people’s” disease but one affecting “all of us.”
Pedro Albajar (director of the WHO’s Chagas Program) mentioned that on the upcoming World Health Meeting, to be held next May, they will discuss the approval of a world day of people affected by Chagas disease. “Affected people associations have chosen to have April 14 as the designated date, because it was on that day in 1909, when the first diagnosis was made by the Brazilian physician Carlos Chagas to, precisely, a girl named Berenice Soares.” And they added that evidence now allow postulating that by treating girls and young women, not only can mother-to-child transmission of the disease be controlled and prevented but also “eliminated.”
What lies ahead is everyone’s work. And key to this work are “alliances that bring together the private sector and civil society,” as Javier Martos, director of the Unicef Spanish committee said during the debate moderated by Mariano Sigman, a scientist with Mundo Sano.
And now what? Mundo Sano, a co-founder of the Global Chagas Coalition, encourages disseminating the campaign, subscribing to the commitment on the website created for that purpose: www.ningunbebeconchagas.com and sharing the video over the social media. Dr. Silvia Gold says that a desirable action would be, for example, playing the video in waiting rooms of health centers where gynecological and pediatric services are provided, so that finally “patients get to know and exercise their right to ask to be diagnosed and treated. We have to take this disease out of the specialists’ capsule. This is a challenge that will not be conquered by one group or another, but by all of us together,” added Silvia Gold, during a meeting where an optimistic feeling was shared towards a reality expected to become true by 2030, thanks to present day tools and evidences. The proof will be to have not a single baby born with Chagas.
El País: Ana will not inherit Chagas disease