The 20-year battle against a silent disease

The fight against Chagas disease in Bolivia has also been a fight against stigmatisation, misconceptions and lack of funding.

Nils Sabin

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‘HELLO, is this your first visit to us?’ asks Yurli Escobar. The nurse behind the reception desk at the screening centre welcomes the patients as warmly as possible. ‘The people who come here are often reticent to talk about their situation because they’ve been stigmatised, so we try to make them feel as comfortable as possible,’ she explains.

The ‘situation’ Yurli Escobar is referring to is having Chagas, a disease endemic in 21 Latin American countries affecting six million people worldwide, including between 600,000 and one million in Bolivia. A silent infection, long ‘associated with poverty and rural areas, although wrongly so’, according to Gimena Rojas, one of two doctors at the Chagas Platform (Plataforma de Atención Integral a Pacientes Adultos con Enfermedad de Chagas, in Spanish) in Cochabamba, in central Bolivia.

Every month, the centre receives dozens of patients, free of charge, who come to be tested or treated for the disease. ‘I’ve had chronic Chagas for years. I’m asymptomatic, but I come for a check-up every year,’ explains Gloria, a patient in her sixties. The nurse takes her into one of the centre’s small rooms, saying: ‘Today, we’re going to check how your heart is doing.’

Named after Brazilian infectious disease specialist Carlos Chagas, who identified it in 1909, the disease is caused by a parasite transmitted by the bite of the triatomine bug. After an acute phase lasting several weeks, the disease becomes chronic and asymptomatic for years or even decades. In 40% of cases, cardiac or digestive complications follow. According to the estimates of the World Health Organization, some 10,000 people die of the disease every year.

‘In the 2000s, many people with Chagas still thought that death was the only outcome, and that treatment was useless,’ explains Rojas. ‘But when the disease is detected and taken care of without delay, it responds very well to treatment.’

Until very recently, the disease was the object of many misconceptions. Triatomine bugs, locally known as vinchucas, are very common, for example, in adobe houses, made of dried earth, ‘and many people believe that these houses and this disease only exist in rural areas, but I’ve seen this type of construction, infested with the bugs, in urban areas, in Cochabamba,’ says María Jesús Pinazo Delgado, head of the Chagas programme at the Drugs for Neglected Diseases initiative (DNDi), an international not-for-profit research organisation working to develop treatments for neglected patients.

People with the disease also used to be stigmatised and even discriminated against: ‘If a man applied to join the army or the police and tested positive for Chagas, he was instantly rejected,’ recalls Rojas.

‘Many people come to us saying “My husband, or wife, doesn’t want to be with me anymore because I have Chagas”, without having any knowledge of how the disease is passed on,’ says Escobar. That’s why special care is taken to ensure that patients ‘feel at ease’. It is also why the two doctors and the two nurses understand and speak Quechua. ‘There are people who come to the centre who speak mainly Quechua, and it’s easier for them to talk about their situation in that language,’ continues the nurse.

While the situation has improved over the last 20 years, there is still much room for improvement in the way patients are cared for in public health centres. ‘We’re still being told that in such and such a district, they don’t want to see us, and the like,’ says Verónica Rodríguez, a member of the Corazones Unidos por el Chagas (Hearts United for Chagas) association in Cochabamba.

The association organises conferences and debates with healthcare professionals to explain the importance of ‘warm and quality care’. ‘Nowadays, people who are infected feel more at ease about seeing a doctor, but if they’re not well received or if they’re told to come back in a fortnight, they lose motivation.’ That’s why some would rather come to a centre that only treats this infection, as the day-to-day emergencies at public health centres mean that Chagas patients are not seen as a priority.

New outbreaks linked to migration

One of the first things the nurses ask when a new patient arrives is whether any of their parents have Chagas and whether they ever lived in a place with triatomine bugs. ‘I lived in the countryside when I was a child and, yes, there were vinchucas,’ replies Beatriz, who now lives in Cochabamba. At age 50, this is her first visit to the centre and she is a little worried about having tested positive: ‘I wanted to give blood, but they told me I had Chagas and that I should come here.’ This is how many people find out that they are infected, as the disease can be transmitted through blood transfusions.

The bugs are still a source of transmission, but it is congenital transmission that is the chief concern among doctors. In around 5–6% of cases, an infected mother can pass on the disease to her child. This makes the fight against the disease all the more difficult as migration means that the disease can be transmitted to areas where there are no triatomine bugs.

‘We are now alerting people to new outbreaks of the infection, for example in the tropical areas of eastern Bolivia,’ warns Dr Jimy Pinto. ‘There, the vinchucas are not yet contaminated with Trypanosoma cruzi [the parasite that causes Chagas], but with the arrival of infected people to these regions, the bugs could pick up the parasite and start to transmit the disease.’

For the doctor, it was migration-related congenital transmission that led to the fight against Chagas in Bolivia: ‘To be perfectly honest, if there hadn’t been an increase in cases in Spain, with immigration from Bolivia and other Latin American countries, I’m not sure that Spanish cooperation would have come here in the 2000s.’

The investments made via the Ceades Foundation, financed by the Spanish Agency for International Development Cooperation (AECID), have been decisive in developing a strategy to combat the disease in Bolivia, as screening and treatment were virtually non-existent prior to the opening of the Chagas Platform in Cochabamba in 2009. It is the doctors from these platforms that have been giving training in tackling the disease to staff in the country’s public hospitals and health centres. Over 50 establishments in the public health system are currently applying their approach in Bolivia.

Improving treatment and access to it

Despite these breakthroughs, the fight against this disease is far from over. For Delgado of DNDi, progress needs to be made on several fronts at the same time: ‘At DNDi, we are working on improving access, because less than 10% of people with Chagas are diagnosed, but we’re also working on more effective treatments or treatments with fewer side-effects.’ In 2011, DNDi’s work led to the development of paediatric doses for the treatment of children. Prior to that, doctors had to estimate the dose needed for children and give them a portion of the adult dose.

Pinto agrees, saying that medical research into the disease needs to be stepped up: ‘The current treatment lasts two months, has adverse effects on 30% of patients and the longer a person has been infected, the less effective it is. All this needs to be improved.’

But research into the disease is hampered by pharmaceutical companies’ lack of interest: ‘It’s not profitable for them,’ says Delgado. ‘So we’re trying to convince them to take part without them losing or making money from the project, by making their molecule bank available, for example.’

The whole research process has to be adapted to the economic situation of the countries where the infection is present. ‘It wouldn’t be much use finding the perfect molecule to treat Chagas if no one was able to pay for the treatment,’ she sums up. The DNDi network is nonetheless working on new molecules, but always based on the criterion of affordable treatment.

With funding to combat the disease becoming increasingly scarce, the Chagas Platform in Cochabamba looks set to close in a few years’ time, for want of new projects. ‘Since 2020, much of the international funding has been directed towards COVID-19 and with the improvement in the situation [in terms of Chagas], there is less interest,’ explains Pinto.

‘The pandemic has hit us very hard, and a lot of our funding has come to an end,’ adds the head of DNDi’s Chagas programme. The upshot could be new flare-ups of the disease, particularly in areas with high levels of migration.              

Nils Sabin is a freelance journalist based in La Paz. Since 2023, he has been covering Bolivia for French-language media. This article, which has been translated from the French, is reproduced from Equal Times (www.equaltimes.org).

*Third World Resurgence No. 360, 2024/3, pp 9-10