Rare disease raises concerns
Rapid spread documented in Central, South America
By Alice Mannette/staff
amannette@newsleader.com
When Pedro Catacamas’ mother died in their home country of Honduras 20 years ago, he learned a new word — Chagas. Two years ago, Catacamus, who now lives in Harrisonburg, heard it again. That fact that not many people have heard of it adds to its danger.
Catacamas has been diagnosed with Chagas, a rare parasitic disease that is spread by an insect and less commonly, a blood transfusion.
“For years I felt pain in my chest, but I didn’t go to the doctor because I thought it was indigestion,” Catacamas said through an interpreter.
“Then I fainted at work and they took me to the hospital.”
It was then, at the University of Virginia, that Catacamas, 39, learned he had Chagas. His sister was tested. She had it too.
Argentinean-born, Charlottesville-based Ric Preve recently released a documentary, “Chagas: A Hidden Affliction,” that cautions the disease is spreading rapidly in Central and South America and that the warning signs of transmitting tainted blood are similar to that of other diseases.
Preve believes that the U.S. blood supply can easily fall victim to corruption by this disease, as adequate screening tests are not in place.
Preve is concerned that because many physicians in the U.S. are not aware of the symptoms of this disease, those afflicted will not be treated correctly. This also is the case locally.
“At the moment, this is not an infection that U.S. physicians have that much experience with,” said Anne Moore, medical epidemiologist at the Center for Disease Control.
“I fear that Chagas is like a 21st century AIDS,” Preve said. “We should not repeat the same mistake as with AIDS. It’s an issue that’s affecting us more and more in the U.S. It’s important to help save people’s lives.”
The Red Cross and Virginia Blood Services verbally screen for Chagas.
Mildred Schoenfeld Hoy of Waynesboro, a Guatemalan native who teaches Spanish and serves as a Spanish translator/interpreter, wants to educate others in the Valley about Chagas.
“I want to learn the symptoms and tell people,” Hoy said. “If it can be stopped, we need to try to stop it. It can definitely be something that we can keep from being spread.”
The disease, named after Brazilian physician Carlos Chagas, who described it in 1909, affects about 18 million people, mainly in Central and South America, killing an estimated 50,000 yearly. Many more might have the disease, which can lay dormant for several decades.
The “kissing bugs” — triatomine— are bloodsucking insects that transmit the parasite responsible for Chagas to humans. It is through these bugs that the disease is spread. Like a mosquito spreading malaria, the triatomine becomes the carrier.
Blood supplies in countries to the south are being tainted. The World Health Organization estimates that the infection rate of blood in selected cities in Central and South America can range from “between 3 and 53 per cent.”
Preve said that the disease is being ignored because it mainly affects those living in poverty-stricken areas, but because it has entered the blood supply in so many Latin American cities, he hopes to raise awareness and asphyxiate this parasitic killer.
It is vital to educate the medical field and those who have immigrated about the symptoms, so that they can be helped. Because of the latentness of the disease and the degree of underreporting, it is not known how many cases presently exist in the U.S.
“Back in the ’90s, they actually did some studies, and they did some screening, and they concluded that it would be desirable to screen the U.S. blood supply for Chagas,” Moore said. She said that screening for this disease is not that different from screening for other pathogens but that the Federal Drug Administration does not currently have a licensed screening mechanism.
Dr. Jed Gorlin, medical director of Memorial Blood Centers in Minneapolis, recently performed a clinical trial for one of the blood screening companies. Findings for this study are expected later this year.
Gorlin, who will present a workshop on examining issues of testing for Chagas for America’s Blood Centers in March, said that if Chagas were not a problem then the FDA “wouldn’t be intending to require a screening test.”
In the U.S., people coming from the affected areas are probably less likely to donate blood, said Dr. John Marr, state epidemiologist at Virginia Department of Health.
“When we look at the public health need, we all agree that there’s a need there (for a screening),” Moore said. But, she cautions, the prevalence of the disease in the U.S. is relatively low.
“There are only seven known transfusion transmitted cases for Chagas disease in the U.S. and Canada in the last two decades,” said Gorlin. “That’s seven out of 280 million transfusions”
But for Catacamas, who suffers the disease’s horrors daily, any case of Chagas is one case too many.
Catacamas, who works the night shift at a factory in the Valley to support his wife and 3-year-old daughter, contracted Chagas from the triatomine bug in his native Honduras. He hopes his story will lead others to seek medical attention or get tested early, so they can be helped. If he had been tested 20 years ago when his mother died, he might have been cured. But because the parasite harbored inside him for so long, a cure is unlikely.
“At first one doesn’t feel good, because they tell you there is no cure,” Catacamas said. “Now, I’m more aware. But when I’m not on the medicine I don’t feel well. With the medicine your heart doesn’t swell. I just have to have medicine for the rest of my life.”
Originally published February 10, 2006
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