BROAD STAGE — Few diseases with symptoms like heart enlargement and failure, antiquated medicine and over 300,000 current reported U.S. cases would receive almost no attention, but such is the case for Chagas disease. Until now, that is.
One hundred years after Chagas was first discovered, researchers, doctors, scientists, clinicians and others are demanding the spotlight be turned to this disease. Chagas is caused by T. Cruzi, a parasite from the bite of a kissing bug endemic to all South American countries, said Michelle French, regional communications manager for the Drugs for Neglected Diseases initiative, known as DNDi.
At 7:30 p.m. today, a public event at the Broad Stage will feature an expert panel discussion with speakers from various organizations including Doctors Without Borders and DNDi.
“[This year] is the 100th anniversary of the discovery of Chagas disease by Carlos Chagas,” said Jana Armstrong, executive director of DNDi, “and this seemed like an appropriate occasion to question why, after 100 years, so little progress has been made when so much scientific progress has occurred over this period.”
A portion of the evening will also feature Maira Gutierrez, a woman living with Chagas.
Gutierrez was diagnosed with Chagas by chance in 1997 after giving blood at the Red Cross. At the time, the Red Cross was not routinely screening for Chagas.
“She was unable to receive treatment even though she knew her diagnosis,” French said. “Her story kind of illustrates that there’s a lack of awareness.”
Gutierrez’ story is certainly not unique. Tests for Chagas are uncommon, and the Red Cross only added Chagas screening to its blood donations in 2007 as a recommended policy rather than a regulation, said medical editor for Doctors Without Borders Oliver Yun. Also, Los Angeles is home to the only treatment center in the U.S.
After its primary/initial phase, Chagas can exist completely unnoticed for decades before heart and gastro-intestinal problems begin to appear. Tests for Chagas are rare, but receiving proper treatment is even more so due to the fact that the drugs, benznidazol and nifurtidox, are not approved of for the treatment of Chagas in the U.S.
“[Chagas was] actually discovered 100 years ago,” French said. “Treatments haven’t really improved in 35 to 40 years.”
She added the drugs have limited efficacy and serious side effects many doctors bypass by simply not treating the disease.
“It’s really important that people are aware of the facts,” said Gemma Ortiz, head of the Doctors Without Borders Chagas campaign.
“The next step for sure is raising public awareness,” she said. “We’re committed to pushing forward and trying to get [the drugs] available in the United States.”
Armstrong said some of today’s topics will touch on accessing existing medicines, the need for new tools for disease control and working together toward solutions in the Americas.
“There will also be a call to the Obama administration to consider Chagas disease as one of the global health priorities in his five year global health initiative,” Armstrong said. “Health issues in middle income countries like Mexico, [Brazil] and Argentina receive very little support from their northern neighbors and while disease endemic countries have a major role to play in controlling Chagas disease, U.S. and Canadian governments and private companies can certainly contribute as well.”
Chagas disease is non-transferable between humans except nursing mothers to infants and through blood and organ donations, but impacts people living in rural areas, especially those who live in mud or adobe houses where the kissing bug lives. While immigrants to the U.S. may carry the disease with them, they cannot infect anyone.
The event today is open to the public and its leaders especially welcome medical practitioners, researchers, companies who wish to support the cause, policy-makers, the Hispanic health community, students, the media and anyone interested in or experienced with Chagas disease. The discussion is located at the Broad Stage at 1310 11th St. A scientific symposium for researchers, doctors, scientists, clinicians and pharmacists will be held Friday, Oct. 2 at UCLA.