A Forgotten Disease, a Forgotten People

Bolivia is an amazing country. That was my first thought when in July 2009 I flew from Santa Cruz de la Sierra to my final destination, Cochabamba. I had come to know Bolivia years earlier through my patients at the Tropical Medicine Unit in the Hospital Clínic in Barcelona, but the ideas I had formed in my imagination were very far from the real thing.

What struck me during that long stay was the country’s rich natural and cultural heritage, the wisdom of its peoples and their values—values long forgotten by some in our so called first world. But what has always attracted my attention most about Bolivia are its contrasts: colours, climates, landscapes, and even, inevitably, the inequities between the people who live there.

It was in 2009 that CRESIB-ISGlobal embarked on a new adventure—a collaboration with CEADES Salud y Medio Ambiente, a Bolivian NGO concerned, like ourselves, with Chagas disease, a forgotten disease that affects a forgotten people. The task we faced was to improve health care for adults infected with this Latin American parasite. Over one million of the ten  million people who live in Bolivia are carriers of the Trypanosoma cruzi parasite, and most of them are unaware of the infection because the disease is asymptomatic in seven out of every ten cases. Every year one of those seven people who has not previously had any symptoms begins to experience episodes of breathlessness, dizziness, or loss of consciousness, and some even die suddenly. These symptoms are the result of the progressive cardiac damage caused by the parasitic infection.

Until now, in the best of cases, these people had access to diagnosis, but when the infection was confirmed they had no access to treatment. In fact, the idea prevalent in the general population, and even in a section of the medical community, is that there is no effective treatment for the disease. In the Chagas Platform we are working together with other international initiatives to challenge these preconceptions and offer those affected not only access to diagnosis and treatment but also clear and useful information about their disease.

The Chagas Platform has diagnosed over 20,000 people and has administered treatment to more than 10,000. Even so, this initiative provides diagnostic coverage to only 1.5% of the population and treatment for under 1%. These are thought-provoking statistics. The aim of our work is to contribute to the reduction of health inequities by trying to ensure that health is a universal right, at least in regard to Chagas disease.

If there is one thing characterises Bolivians, it is the itch that drives them to travel from one place to another, a legacy of their ancestral nomadic migrations. Like all migrant peoples they travel with all their baggage, and in their q'epi,¹ as just another personal belonging, they also carry the diseases of their home country (in the same way that travellers from the Old World once brought their diseases to the New World). As a result of these migratory flows, Chagas disease has spread all over the world. It is estimated that there are now 8 million people worldwide infected with the parasite. And this brings me back to the beginning of my story: if it were not for the men and women who came to our clinic in Barcelona seeking medical care (and to other hospitals in non-endemic countries), this disease would never have started to emerge from obscurity and neglect. Today, we no longer talk about an exotic disease that only affects people living in remote villages in the valleys of Llajta² and other parts of Bolivia.  Today, Chagas disease is also an ever-present reality in countries where it not previously found—including Spain, where it is estimated that there are currently around 70,000 cases. In non-endemic areas, however, the disease is only transmitted through blood transfusions, organ transplants, or from mother to child during pregnancy.

Here in Spain, where we have only recently had to manage this disease, we have learned a great deal from our collaboration with the Chagas Platform. We are still learning, and we are still fighting.

¹ In Quechua a pack, typically made of awayo, used to transport personal belongings. Baggage.

² The Quechuan word for a “town” and the name of the department of Cochabamba.

María Jesús Pinazo, an ISGlobal researcher, is the Technical Coordinator of the Chagas Platform in Bolivia.

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