Chagas: desde la grada también se juega

Chagas Disease: Those Who Sit in the Stands Also Play the Game

24.10.2016
image alt

From her seat in the stands at Barcelona Football Club’s Mini Stadium, Lisbeth Salazar followed the movements of one player attentively. Sitting in the shade beside her partner Carlos, she had come to answer the call to play a match against Chagas disease. Owing to health problems, Lisbeth could not go out on the pitch and play, but one of her sons, aged 17, was playing for her.

Over 100 participants participated in games of football and group meetings at FCB’s Mini Stadium. All of them were united by a single rallying call: Let’s beat Chagas disease

The event took place at the beginning of September during a break in the Spanish league. Over 100 participants assigned to different teams alternated between games of football and group meetings. This model was designed by FutbolNet, a FC Barcelona initiative that works to further the club’s core values (respect, effort, ambition, teamwork, and humility). It can be adapted to the needs of a specific group or initiative. In this case, the aim of the event was to encourage more people to participate in the effort to raise awareness within their communities about Chagas disease, a neglected disease that affects between six and seven million people worldwide and causes about 7,000 deaths every year.

Most of the participants came from Latin American communities living in Catalonia. Some were patients with Chagas whose disease is currently under control; others were family members and friends; and yet others were health care professionals involved in treating the disease, researchers or carers working with people who have the disease. All of them were united by a single rallying call: “Let’s beat Chagas disease”.

The event was an initiative of the FC Barcelona Foundation together with ISGlobal-Hospital Clínic,  the Global Chagas Disease Coalition, Mundo Sano, PROSICS-Vall d’Hebron, and the ASAPECHA Association. It was supported by Airpharm.

Chagas disease is called the silent killer because those affected may present no symptoms for many years. But, in some cases, the disease causes sudden death

Between the games and the group meetings, Lisbeth Salazar, a 53-year-old from Camiri, Santa Cruz in Bolivia who was sitting in the stands, told us that she had been diagnosed with Chagas disease when she was a 16-year-old working in a hotel.  “At that time, Chagas was seen as an incurable disease that killed old people. I was young. Why should I worry?” she explained.

The assorted flags hanging on the goal nets revealed the countries of origin of many of the players, with those of  Bolivia, Ecuador, and Colombia representing the countries where the disease is endemic. In those countries, Chagas, a disease caused by infection with the Trypanosoma cruzi parasite, is mainly transmitted by an insect vector (the kissing bug, vinchuca or chinche) native to parts of South and Central America and Mexico. However, the infection can also be transmitted in other ways, including congenitally (from a mother to her child during pregnancy) and by way of blood transfusions.

On the nets, Catalan flags flew alongside those of Latin America. As a result of migratory flows, Chagas has spread to other parts of the world. Spain, with more than 68,000 cases, is currently the nonendemic country with the second largest population affected by the disease, coming after the United States.  Since 2012, over 4,500 patients have been treated in Spain; the largest affected population is found in Catalonia, followed by Madrid, Valencia, Murcia and Andalusia.

The Sunday we met at the FC Barcelona Mini Stadium was one of the hottest days of the year, and perhaps that is why Lisbeth remembered the river. When the weather was particularly hot, the people from her hometown used to cool off on the banks of the Parapetí river. And it was there that one of her sisters died at only 20 years of age. “She dozed off on the riverbank for a while and when they came to wake her, her eyes were already closing in death. She most probably died because of Chagas disease, just like my father and my mother.” One of Lisbeth’s friends also died recently. They were the same age and both from the same town. He died here, in Barcelona. Both of them had Chagas disease and, like Lisbeth, her friend also had a pacemaker.

This a public health problem and to address it we need a greater R&D effort

Three out of every ten people infected with the parasite eventually develop complications, mainly heart disease and digestive tract disorders. However, these complications can be avoided if the disease is treated in time. Chagas disease is called “the silent killer” because those affected may present no symptoms for many years. But, in some cases, the disease causes sudden death.

When the disease is not treated in time, 30% of those infected develop severe complications affecting the heart or the digestive system. Lisbeth has been wearing a pacemaker for four years now. She takes good care of herself and follows the advice of the health care professionals who treat her. She is known, she says, as “a unique and complex case” because her disease has reached such an advanced stage.

Since she came to Catalonia, Lisbeth has worked in domestic service And the experience has not always been a good one. A story of exploitation, abuse, discrimination, undeclared work, and nights spent huddled in a corner with a packed suitcase, sharing a house with 20 other people. But she has been able to depend on Carlos, her Cuban partner, who has never been far away since  they met when he came to do some electrical work at Lisbeth’s house. Then, Carlos knew nothing about Chagas disease. Now, he has become something of an expert. Lisbeth explained that she receives excellent treatment at the Hospital Clínic in Barcelona.  “I know that in Bolivia it would have taken huge resources and an effort that I can no longer make to get that level of care. I know this because it was very difficult for my sister to get the care she needed there.”

We need more support and we need pharmaceutical companies to invest more in researching new diagnostic tests and treatments. The game is going to be a long one, but we are going to win it

Around midday, the heat got even more intense, making it necessary to cut the games short. One of the players, Dr Jordi Gómez i Prat from PROSICS and the Vall d’Hebron hospital, had earlier pointed out that there is no vaccine against Chagas disease at the moment. He went on to say “this a public health problem and to address it we need a greater R&D effort to raise awareness, make progress, and create an environment in which new diagnostic tools and treatments will be developed”.

At the end of the day, Víctor Orosco, from the Association of Friends of People with Chagas Disease (ASAPECHA), stepped up to the microphone and issued the following wakeup call to the pharmaceutical industry: “All of us who came here today are people in the best position to say that we are not alone and we do not want to be the victims of silence. We need more support and we need pharmaceutical companies to invest more in researching new diagnostic tests and treatments. The game is going to be a long one, but we are going to win it”. He concluded by thanking all the players and the spectators for coming along to the event.  And although Lisbeth was a spectator, her presence clearly showed that those who sit in the stands also play the game.

More information

Report of the event in Planeta Futuro-El País
Video of the event
ISGlobal Chagas Initiative 
Chagas Coalition
InfoChagas