Raising the profile of Chagas disease amongst Haringey's Latin American population

Dr Natalie Elkheir is a Clinical Research Fellow at the London School of Hygiene and Tropical Medicine and the Hospital for Tropical Diseases at UCLH. Her research aims to understand the epidemiology of Chagas disease among Latin American migrants in London, with a view to informing an effective and equitable screening programme. She sat down with Healthwatch Haringey’s policy and research officer Emily Arama Sánchez. 

Chagas disease is common in parts of Latin America despite the fact that not many people have heard about it here in the UK. The disease is caused by a parasite called Trypanosoma cruzi and that parasite is mainly spread by bugs in Latin America that live in rural areas. 

One third of people infected with the parasite go on to develop heart or gut disease, usually decades after initial infection. Chagas is often described as a silent killer due to its tendency to cause advanced heart disease before symptoms appear. It affects seven million people worldwide and causes 12,000 deaths annually.

Treatment is possible but in the UK there's uneven access to testing for Chagas disease, a simple blood test. Dr Elkheir explained:

"The good news is that there are tests available and that there is a treatment and specialist care available. The bad news is that that access to testing is still quite patchy and there's still a lot of work to be done."

There is a health inequality issue in the UK, because in some communities, for example, people who grew up in rural parts of Bolivia, Chagas disease is very common and prevalence amongst Bolivians here could be around 15%, comparable with diabetes or cancer. 

"That's up there with other common ailments like diabetes or cancer but despite that, there's such low awareness among health care professionals."

Barriers

There are many barriers to people getting screened for Chagas disease. Most hospitals in London can request the test, but many GP practices can't request it on their system. Dr Elkheir talked about the lack of awareness:

"It's a barrier that sounds very simple, but one that's been quite difficult to break down. Even if [a patient] asks the GP for a test, If that GP doesn't have the knowledge about Chagas disease, it's quite difficult for them to navigate where to go from there."

A comprehensive screening programme is needed:

"Screening should be something that's openly offered to everyone that's at risk. It should come with a program of education and awareness raising. It should come with reminders. It should be a system that's accessible with appointments available at different times of the day and so on. At the moment, that's just not happening. And so the onus is really on people to request to test themselves."

Language barriers are a big issue too. Even though interpreters should be available to GPs, awareness is low and patients can find an interpreter quite difficult to arrange.

Another issue is stigma. Chagas historically has been a disease linked with poverty because it is most common in rural impoverished parts of Latin America and so there is some stigma surrounding this disease and people may not wish to recognise their risk because of that association with poverty.

Information about Chagas disease

UK Chagas Hub | UCLH | Chagas disease treatment and research

information resources for healthcare professionals

Information for doctors 

English and Spanish information leaflets

UKHSA Chagas disease: Migrant health guide

World Chagas Disease Day