A SILENT AND DEADLY SOUVENIR OF HOME by Erin Loury

My story on Chagas disease is the article I am most proud of from my summer at the Los Angeles Times. I found the end result particularly rewarding because I had never heard of the disease before starting the story. The topic has many complexities, which I found both fascinating to learn about and challenging to convey.

The story idea came from another reporter who had adopted two kids from Guatemala, and was concerned about what some were calling “the new HIV from Latin America.” Researchers had touched off a controversy a month earlier by publishing a paper that compared Chagas to HIV. Some of the ensuing news coverage was a bit sensational or over-stated.

In my own story, I grappled with how to acknowledge the similarities between Chagas and HIV, as well as the important differences. I also wanted to communicate the impact of the disease in both Latin America, where it originates, and in the United States. The story proved particularly relevant to Los Angeles, not only because of the large Latin American population, but also because the city houses the only Chagas clinic in the country.

To build my understanding of the disease, I spoke to several people in medicine, research, public health, and health education. I’m glad I also had the opportunity to speak to a woman with Chagas, who graciously shared her story, and to attend a local health fair. Part of me wanted to describe every intriguing aspect of the disease in detail: how it spreads, how it affects the body, why it is so challenging to diagnose. My editor helped me find the right balance to make the story thorough without being overwhelming.

What I find most striking is how few people in the United States receive treatment for Chagas disease compared to the estimated number of cases. I felt my story had achieved something when a friend told me he saw it in the American Medical Association Morning Rounds briefing. Hopefully my story will play some part in helping doctors improve diagnosis and treatment for this often overlooked illness.

This article, which originally ran on July 8, 2012, has been reproduced in its entirety on our website with permission from the Los Angeles Times.

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DENVER — As Chris Lindleydrove to work that morning in August2008, a call set his heart pounding.

The Democratic National Conven-tion was being held in Denver, and Ba-rack Obama was to accept his party’spresidential nomination before acrowd of 80,000 people that night.

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But the system has not lived up toits billing. It has repeatedly cried wolf,producing dozens of false alarms inLos Angeles, Detroit, St. Louis, Phoe-nix, San Diego, the San Francisco BayArea and elsewhere, a Los Angeles

Lawrence Livermore National Laboratory

A BIOWATCH air sampler in the Washington, D.C., subway. This unit is a prototype of next-generationsamplers intended to be more reliable, but the new technology has also shown problems in testing.

The biological defensesystem that cries wolfBioWatch, the federal network of air samplers aimed at thwartinga terrorist attack, is plagued by false alarms and other failures.

By David Willman

[See BioWatch, A12]

ANN ARBOR, Mich. — In1963, an explosive year in thequest for civil rights, GeorgeRomney appeared unan-nounced in the mostly whitesuburb of Grosse Pointe andmarched to the front of ananti-segregation demon-stration to stand besideblack leaders.

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The cryptic letter arriveda few weeks after Maira Gu-tierrez donated blood for thefirst time in 1997. The RedCross had rejected herblood. It listed a phone num-ber to call.

Gutierrez left a message,then waited three agonizingdays for a reply, fearing shehad HIV. The truth provedmore confusing than reas-suring: She had somethingcalled Chagas’ disease, anailment she’d never heard of,spread by a winged insect in-congruously dubbed the“kissing bug.”

A Red Cross pamphlettold her the parasitic afflic-tion could be fatal — it couldstop her heart. But doctorsshe consulted didn’t knowhow to help her or treat thedisease.

Physically, Gutierrez feltfine. After months of stressand unanswered questions,she decided to try to moveon. But for more than a dec-ade, the heavy knowledgethat she carried a poten-tially deadly parasite hungover her.

Then, late one evening in2008, her sister phoned, fran-

tic. Chagas’ disease was onthe news.

::

Chagas affects an esti-mated 300,000 people in thiscountry and about 13 millionworldwide, chiefly in LatinAmerica, where it is a lead-ing cause of heart failure.

Most carriers in theUnited States are immi-grants who acquired the dis-ease in impoverished areasof Bolivia, Mexico or CentralAmerica, where kissing bugsinhabit the cracks and cran-nies of homes. The bugs nip

Michael Robinson Chavez Los Angeles Times

A POSTER shows carriers and effects of Chagas’disease as a person gets a blood test at a health fair.

A silent and deadlysouvenir of homeChagas is a parasiticdisease most oftenfound in immigrants. Itcan go undetected fordecades. But publicawareness is growing.

By Erin Loury

[See Chagas, A20]

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Denounced by some aspropaganda by the enemy inAmerica’s longest war,hailed by others as a rarewindow on a largely hiddenworld, the verse assembledin “Poetry of the Taliban” isby turns bombastic and in-trospective, dark and mirth-ful, ugly and lyrical — andperhaps above all, surpris-ing in its unabashedly emo-tional tone.

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[See Polar bears, A11]

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at faces and lips while peoplesleep, and drop feces ladenwith the parasite Trypano-soma cruzi. The parasitecan enter the open woundand circulate in the blood,attacking the heart, colon oresophagus.

No one is predicting anepidemic in this country, butdisease experts are trying toincrease awareness, testingand treatment of Chagas,which can affect sizableswaths of the population,particularly in states likeCalifornia, with a large LatinAmerican immigrant popu-lation.

The effort is needed be-cause the disease can lingerundetected for decades,making it difficult to diag-nose. Symptoms can be assubtle as an irregular heart-beat or shortness of breath.

Two-thirds of those whobecome infected never de-velop complications. But forabout 30% of those who con-tract Chagas’ disease, it cancause serious illness, oftensilently ravaging the heartmuscle. Most American phy-sicians don’t think to test forit, potentially denying life-saving treatment to thou-sands.

The disease can triggerstrokes and heart failure inpeople as young as 30. “Yourheart just turns into a big, in-effective bag,” said cardiolo-gist Sheba Meymandi, direc-tor of a Chagas treatmentprogram at Olive View-UCLA Medical Center, theonly one of its kind in the na-tion. About 1 in 100 LatinAmerican immigrantswhom the center tests hasthe disease.

Insects carrying the par-asite live throughout thesouthern half of the U.S. Butthere have been only nineconfirmed cases of peoplecontracting the disease frominsects in this country since1955.

Still, says Meymandi,“This is not an exotic dis-

ease. This is a prevalent dis-ease that is treatable in ourcommunity. And until peo-ple think about it, we’re notgoing to make inroads.”

Kissing bugs are sus-pected of having infectedtwo Los Angeles high schoolstudents recently. Meyman-di treated the 17-year-olds,who tested positive for Cha-gas after donating at schoolblood drives. Neither is ofLatin American descent orhas ever traveled to the re-gion. But both spend timeoutdoors mountain bikingor golfing, and Meymandithinks they acquired the dis-ease locally.

Los Angeles County cur-rently has no Chagas publiceducation program, but offi-cials say they might createone if there are increasedsigns that the disease is be-ing contracted locally.

The federal Centers forDisease Control offers freedrugs to treat Chagas. Butthey receive just 50 or 60 re-quests a year for the medica-tions, suggesting that thou-sands of cases go untreated.“Most healthcare providersdon’t think of Chagas’ dis-ease when they see someonewho might be at risk,” saidSusan Montgomery, a CDCepidemiologist.

::

Gutierrez, 39, of MissionHills grew up in the smallmountain village of ElCongo, El Salvador, with norunning water or electricity.She lived with her grand-mother until age 8, then im-migrated to Lynwood withher younger sister to join herparents, who had alreadyfled their homeland’s civilwar.

Working as an adminis-trative assistant at Univer-sal Studios introduced Gu-tierrez to the man who be-came her husband, Daniel,who works there as a land-scaper. It was also throughher job that she learned of

Chagas. She tested positivefor the disease during a ran-dom screening after a 1997workplace blood drive.

The Red Cross brochurethat Gutierrez received ex-plained that kissing bugsspread the disease in placesof extreme poverty, hiding inthatched roofs and crackedwalls. Looking at the bro-chure’s photos, Gutierrezflashed back to El Congo:“Oh, my God, that’s exactlywhere I lived.”

Her doctor referred herto a specialist, who told herChagas was untreatable,Gutierrez said. She was con-fused and angry — no onecould tell her what to do.Eventually, she stopped ask-ing.

For the next decade, Cha-gas crossed her mind when-ever her health flagged,when her daughter was borntwo months early, when de-livering her son required alengthy recovery.

After her sister calledabout the Chagas news storyin 2008, Gutierrez learned ofthe Olive View Center andcontacted Meymandi. Thedoctor performed hearttests and started Gutierrezon an anti-parasitic drug.She took the pills threetimes a day for threemonths, a grueling regimenthat sapped her appetite.She lost 20 pounds.

As with nearly everyonewho undergoes treatment,she wasn’t cured, but herparasite count and the risksof serious complicationswere greatly reduced.

After her treatment, Gu-

tierrez began speaking atmedical conferences aboutChagas from a patient’s per-spective. “People think it’snot here,” she said.

::

Experts agree that Cha-gas needs more attention,but a recent editorial in thePublic Library of Science’sjournal Neglected TropicalDiseases sparked contro-versy by labeling Chagas“the new HIV/AIDS of theAmericas.” Peter Hotez, thepaper’s lead author anddean of the National Schoolof Tropical Medicine inHouston, noted that bothare chronic diseases spreadby blood, require toxic medi-cations and disproportion-ately affect the poor.

But Chagas is not a virusand cannot be sexuallytransmitted. And there is lit-tle patient advocacy to drawattention and funding to the

illness. “This is a forgottendisease among forgottenpeople,” Hotez said.

Caryn Bern, a visitingglobal health expert at UCSan Francisco, said the com-parison to HIV is overblownand sensational. And Mey-mandi worries that the asso-ciation will create additionalstigma for immigrants withChagas.

In the southern U.S., kis-sing bugs carrying the para-site can infect raccoons,dogs and, on occasion, peo-ple. The blood-borne dis-ease also passes frommother to child in utero 5%to10% of the time.

Since 2007, the AmericanRed Cross has screened allnew blood donors for Cha-gas. Unlike Gutierrez, do-nors who test positive todayreceive disease informationand treatment guidancefrom the outset. But the RedCross has found that mostdo not check in with a doctor

as instructed.A more effective ap-

proach, Meymandi says, isworking with promotoras —trusted Latin Americancommunity members whoprovide health educationthrough churches andschools. They also organizeneighborhood health fairs,where Meymandi and herstaff collect blood samplesfor Chagas testing. Attend-ees who test positive almostalways come in for treat-ment, Meymandi said.

At a recent fair at Em-manuel Covenant Church inNorthridge, several dozenpeople advanced throughrows of wooden chairs, fan-ning themselves with healthbrochures. Mara Barajas ofPacoima sat at the Chagastable while a nurse swabbedthe crease of her elbow, thenpushed a thin needle underher skin. Barajas’ 4-year-oldson, Justin, covered his eyes.

The 40-year-old, who em-igrated from Mexico 12 yearsago, had never heard of Cha-gas’ disease but still wantedtesting. “It’s good to know,”she said.

Chagas screening can bea hard sell for some. Gutier-rez persuaded her family toget tested — everyone buther sister, whose late-nightphone call finally led Gutier-rez to treatment. Gutierrezsaid her sister fears that re-ceiving a positive test resultwould “eat you up alive.”

For Gutierrez, the dis-ease’s shadow remains, ifmore faintly. “You kind offorget that you have it untilsomeone brings up the sub-ject,” she said.

She’s determined to leada normal life but also talkswith her husband abouttheir finances, their kids’college education and whenhe could remarry — just incase. “I don’t know howmuch time I have,” she said.“It could be 50 years, but I’mnot sure.”

erin.loury@latimes.com

Photographs by Michael Robinson Chavez Los Angeles Times

CARDIOLOGIST Sheba Meymandi, center, directs a Chagas’ disease treatmentprogram at Olive View-UCLA Medical Center, the only one of its kind in the U.S.

MAIRA GUTIERREZ, who was born in El Salvador,went untreated for years after her Chagas diagnosis.

Treatment cankeep effects ofChagas at bay[Chagas, from A1]

‘This is aforgotten diseaseamong forgottenpeople.’

— Peter Hotez,

dean, National Schoolof Tropical Medicine

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