Fear, stigma, gaps in the health system, and lack of awareness in the medical community are among the barriers keeping the most vulnerable from accessing essential care for Chagas disease, a leading cause of heart disease in the Americas, according to a paper published today by the not-for-profit drug development organization Drugs for Neglected Diseases initiative (DNDi), the Center of Excellence for Chagas Disease (CECD) at Olive View-UCLA Medical Center, and the international medical humanitarian organization Doctors Without Borders/Médecins Sans Frontières (MSF).
Appearing in PLOS Neglected Tropical Diseases, this paper examines why only 0.3% of the more than 300,000 people living with Chagas in the US have received potentially life-saving treatment for this neglected disease, which is transmitted by blood-sucking “kissing” bugs. While Chagas is transmitted within the US by native kissing bugs, most patients living with the disease were born in Latin America, and today face multiple barriers to accessing healthcare. Chagas can cause life-threatening heart damage and gastrointestinal complications if not treated early
The authors note that widening political and economic inequalities, intersecting with anti-immigrant sentiments, severely limit the ability of many people with Chagas disease to access care. An estimated 30% of those living with Chagas in the US are undocumented.
“The neglect of people living with Chagas disease is another example of how the current environment is having an impact on the health of immigrant communities in the US,” said Dr Sheba Meymandi, Director of the CECD at Olive View-UCLA Medical Center and an author of the paper. “It is hard to get treated when you’re in a job that won’t provide time off, and you have to take a three hour bus ride to get to an appointment, and then your doctor doesn’t know what you’re talking about when you bring up Chagas disease.”
The CECD is the only US provider fully dedicated to comprehensive health for Chagas disease. Since 2007 it has screened 8,000 patients for Chagas disease – often through health fairs in Los Angeles. But unfortunately, the CECD is a rarity in the US. As the authors point out, most health care providers in the US are unfamiliar with the disease. Chagas is a “silent disease” and by the time symptoms appear treatment may be less effective, making it important to test people who might be at risk as early as possible.
Based on the CECD’s experience in Los Angeles, the authors propose strengthening screening and public awareness programmes, bolstering education of healthcare personnel, and ensuring screening and treatment are freely available to people at risk of the disease. Increased investments to improve diagnosis and simplify treatment will also be critical to improving care for people with Chagas disease.
Read stories of people living with Chagas disease in the US, including those that were infected without ever leaving the country.
Story – Voices of Chagas in the USA
A not-for-profit research and development organization, DNDi works to deliver new treatments for neglected patients, those living with Chagas disease, sleeping sickness (human African trypanosomiasis), leishmaniasis, filarial infections, mycetoma, paediatric HIV, and hepatitis C. Since its inception in 2003, DNDi has delivered eight new treatments to date, including new drug combinations for kala-azar, two fixed-dose antimalarials, and DNDi’s first successfully developed new chemical entity, fexinidazole, approved in 2018 for the treatment of both stages of sleeping sickness. www.dndi.org
Doctors Without Borders/Médecins Sans Frontières (MSF) is an international, independent medical humanitarian organization working in more than 70 countries to assist people affected by armed conflict, epidemics, health care exclusion, and natural or man-made disasters. Learn more here: www.doctorswithoutborders.org
About the CECD
Housed within the Olive View-UCLA Medical Center in Sylmar, California, the Center of Excellence for Chagas Disease (CECD) is the only organization in the United States fully dedicated to providing comprehensive care for people affected by Chagas disease. www.chagasus.org
DNDi North America
Tel: +1 646 266 5216
Photo credit: Angela Boatwright-DNDi