PAGE 126 Researchers screened more than a hundred women and men: Nicole Behrens-Bradley et al., “Kissing Bugs Harboring Trypanosoma cruzi, Frequently Bite Residents of the US Southwest But Do Not Cause Chagas Disease,” American Journal of Medicine 133, no. 1 (January 2020): 108–114.
IF TÍA HAD KNOWN
For a lively introduction to parasites, see Carl Zimmer, Parasite Rex: Inside the Bizarre World of Nature’s Most Dangerous Creatures (New York: Atria, 2000).
PAGE 129 In the belly of a kissing bug, it looks like a tadpole with a pointed face: “Parasites - American Trypanosomiasis (also known as Chagas Disease),” Centers for Disease Control and Prevention, updated February 11, 2019, https://www.cdc.gov/parasites/chagas/; W. de Souza, T. U. de Carvalho, and E. S. Barrias, “Ultrastructure of Trypanosoma cruzi and Its Interaction with Host Cells,” in American Trypanosomiasis, Chagas Disease: One Hundred Years of Research, 2nd ed., eds. Jenny Telleria and Michel Tibayrenc (New York: Elsevier, 2017), 401–28; and Wanderley de Souza, “Electron Microscopy of Trypanosomes: A Historical View,” Memórias do Instituto Oswaldo Cruz 103, no. 4 (June 2008): 313–25.
PAGE 129 From the Greek, trypanon means a borer: Centers for Disease Control and Prevention, “Etymologia: Trypanosoma,” Emerging Infectious Diseases 12, no. 9 (September 2006): 1473.
PAGE 131 After much testing, Dr. Kirchhoff and Otsu figured out: Louis Kirchhoff and Keiko Otsu. Recombinant Polypeptides for Diagnosing Infection with Trypanosoma cruzi. US Patent 7,491,515 B2, filed December 4, 2001, and issued February 17, 2009.
PAGE 131 He licensed the proteins to Abbott Diagnostics: “Trypanosoma cruzi (T. cruzi) (Anti-T. cruzi Assay),” US Food and Drug Administration, updated April 11, 2019, https://www.fda.gov/vaccines-blood-biologics/blood-donor-screening/trypanosoma-cruzi-t-cruzi-anti-t-cruzi-assay.
JANET AND HER BABY
Although the physician who oversaw the care for Janet’s baby denied my requests for interviews, a case report about the newborn was published and this provided the medical information for this chapter: Andrés Alarcón et al., “Diagnosis and Treatment of Congenital Chagas Disease in a Premature Infant,” Journal of the Pediatric Infectious Diseases Society 5, no. 4 (December 2016): e28–e31.
PAGE 143 It’s called congenital Chagas disease: Morven S. Edwards et al., “Perinatal Screening for Chagas Disease in Southern Texas,” Journal of the Pediatric Infectious Diseases Society 4, no. 1 (March 2015): 67–70.
PAGE 143 Such a transmission happened in Washington, DC: Louis V. Kirchhoff, Albert A. Gam, and Flora C. Gilliam, “American Trypanosomiasis (Chagas’ Disease) in Central American Immigrants,” American Journal of Medicine 82, no. 5 (May 1987): 915–20.
PAGE 144 The CDC estimates that anywhere between 63 and 315 babies: Susan P. Montgomery et al., “Neglected Parasitic Infections in the United States: Chagas Disease,” American Journal of Tropical Medicine and Hygiene 90, no. 5 (May 2014): 814–18.
PAGE 144 In Latin America, the numbers are much higher: Pan American Health Organization/World Health Organization, “PAHO Launches New Initiative to Eliminate Mother-to-Child Transmission of Four Diseases,” press release, August 10, 2017.
PAGE 144 If they were, many of the lost babies could be saved: Maria Carmo Pereira Nunes et al., “Chagas Cardiomyopathy: An Update of Current Clinical Knowledge and Management: A Scientific Statement from the American Heart Association,” Circulation 138, no. 12 (September 2018): e191.
PAGE 144 According to the Pan American Health Organization, about one-third: Pan American Health Organization/World Health Organization, “PAHO Launches New Initiative to Eliminate Mother-to-Child Transmission of Four Diseases.”
PAGE 144 In 2013, a man in his early twenties showed up: Jorge Murillo et al., “Congenital Chagas’ Disease Transmission in the United States: Diagnosis in Adulthood,” ID Cases 5 (2016): 72–75.
PAGE 144 In 2010, the year Tía Dora died, a boy in Virginia: Raul A. Lazarte et al., “Congenital Transmission of Chagas Disease—Virginia, 2010,” Morbidity and Mortality Weekly Report 61, no. 26 (July 6, 2012): 477–79.
PAGE 154 While the percentage of children born with congenital form: Louisa Messenger and Caryn Bern, “Congenital Chagas Disease: Current Diagnostics, Limitations and Future Perspectives,” Current Opinion in Infectious Diseases 31, no. 5 (October 2018): 415–421.
PAGE 154 in one area of Janet’s home country, a study estimated that about 7 percent: Caryn Bern, Diana L. Martin, and Robert H. Gilman, “Acute and Congenital Chagas Disease,” Advances in Parasitology 75, (2011): 30.
PAGE 158 The correct answer is yes, but 84 percent of obstetricians and gynecologists: Jennifer R. Verani et al., “Survey of Obstetrician-Gynecologists in the United States about Chagas Disease,” American Journal of Tropical Medicine and Hygiene 83, no. 4 (October 2010): 891–95.
PAGE 158 almost seven hundred thousand babies are born every year: “Number of Births by Hispanic Origin of Mother,” State Health Facts, Henry J. Kaiser Family Foundation, 2017.
PAGE 158 In 2006, the federal government convened a panel of experts: Michael Watson et al., “Newborn Screening: Toward a Uniform Screening Panel and System—Executive Summary,” Pediatrics 117, suppl. 3 (May 2006): S296–S307.
PAGE 158 Newborns are screened for fifteen diseases that occur less frequently: R. Rodney Howell et al., “CDC Grand Rounds: Newborn Screening and Improved Outcomes,” Morbidity and Mortality Weekly Report 61, no. 21 (June 1, 2012): 390–93; and Edwards et al., “Perinatal Screening for Chagas Disease in Southern Texas,” Journal of the Pediatric Infectious Diseases Society 4, no. 1 (March 2015): 67–70.
PAGE 158 Eileen Stillwaggon, an economist at Gettysburg College: Eileen Stillwaggon et al., “Congenital Chagas Disease in the United States: Cost Savings through Maternal Screening,” American Journal of Tropical Medicine and Hygiene 98, no. 6 (June 2018): 1733–42.
PAGE 158 A girl infected with the kissing bug disease, like Janet: Sergio Sosa-Estani et al., “Etiological Treatment of Young Women Infected with Trypanosoma cruzi, and Prevention of Congenital Transmission,” Revista da Sociedade Brasileira de Medicina Tropical 42, no. 5 (September/October 2009): 484–87.
LA DOCTORA
PAGE 161 The FDA had not approved benznidazole for use in the United States: Andrés Alarcón et al., “Diagnosis and Treatment of Congenital Chagas Disease in a Premature Infant,” Journal of the Pediatric Infectious Diseases Society 5, no. 4 (December 2016): e28–e31.
PAGE 162 She would have started on medication: I based this upon what I witnessed for patients whose stories I document elsewhere in this book. Also see: Caryn Bern, “Chagas’ Disease,” New England Journal of Medicine 373, no. 5 (July 2015): 456–66.
PAGE 166 Adults can have allergic reactions: US Food and Drug Administration, “Benznidazole Tablets, for Oral Use,” August 2017.
CANDACE
PAGE 169 She was one of at least seventy-five people: Centers for Disease Control and Prevention, email message to author, April 20, 2020.
PAGE 173 The sanitary engineer who traced the typhoid outbreak: For this and other details about Mallon, see: Priscilla Wald, Contagious: Cultures, Carriers, and the Outbreak Narrative (Durham, North Carolina: Duke University Press, 2008), 84–107; and Alan M. Kraut, Silent Travelers: Germs, Genes, and the “Immigrant Menace” (New York: Basic Books, 1994), 98–103.
PAGE 174 The CDC erroneously labeled Haitians a high-risk group: Edwidge Danticat, “Trump Reopens an Old Wound for Haitians,” The New Yorker, December 29, 2017.
PAGE 175 A search in PubMed, the medical literature database, confirmed: Norman C. Woody and Hannah B. Woody, “American Trypanosomiasis (Chagas’ disease); First Indigenous Case in the United States,” Journal of the American Medical Association 159, no. 7 (October 15, 1955): 676–77.
PAGE 177 A year after the baby was diagnosed, a dermatology journal: T. L. Shields and E. N. Walsh, “’Kissing Bug’ Bite,” Archives of Dermatology 74, no. 1 (July 1956): 14–21.
PAGE 177 Seven children were in
fected: Norman C. Woody, Noel DeDianous, and Hannah B. Woody, “American Trypanosomiasis: II. Current Serologic Studies in Chagas’ Disease,” Journal of Pediatrics 58, no. 5 (May 1961): 738–45.
PAGE 177 Researchers screened Native Americans: P. T. K. Woo, “Mammalian Trypanosomiasis and Piscine Cryptobiosis in Canada and the United States,” Bulletin of the Society of Vector Ecology 16, no. 1 (June 1991): 25–42.
PAGE 177 In 1982, kissing bugs in Northern California bit a woman: T. R. Navin et al., “Human and Sylvatic Trypanosoma cruzi Infection in California,” American Journal of Public Health 75, no. 4 (April 1985): 366–69.
PAGE 177 A year later, in 1983, a newborn in Corpus Christi: Diane E. Ochs et al., “Postmortem Diagnosis of Autochthonous Acute Chagasic Myocarditis by Polymerase Chain Reaction Amplification of a Species-Specific DNA Sequence of Trypanosoma cruzi,” American Journal of Tropical Medicine and Hygiene 54, no. 5 (May 1996): 526–29.
PAGE 177 The following year, Violette S. Hnilica, a pathologist: Ochs et al., “Postmortem Diagnosis of Autochthonous Acute Chagasic Myocarditis,” 526–29.
PAGE 178 When Texas health officials arrived at the family’s home: Texas Department of Health, “Chagas’ Disease Investigation,” Texas Preventable Disease News 44, no. 31 (August 4, 1984).
MAIRA
PAGE 84 Maira had an advantage over the parasite: Elizabeth Whitman, “Chagas Disease: How a Silent Tropical Parasite Prospers in the US,” International Business Times, May 26, 2015.
PAGE 184 California has the highest number of people: Jennifer Manne-Goehler et al., “Estimating the Burden of Chagas Disease in the United States,” PLOS Neglected Tropical Diseases 10, no. 11 (November 2016).
PAGE 186 She didn’t know that every year an estimated ten thousand people die: “Chagas Disease (American Trypanosomiasis),” World Health Organization, https://www.who.int/chagas/epidemiology/en/.
PAGE 186 One study in Brazil looked at blood samples: Ligia Capuani et al., “Mortality among Blood Donors Seropositive and Seronegative for Chagas Disease (1996–2000) in São Paulo, Brazil: A Death Certificate Linkage Study,” PLOS Neglected Tropical Diseases 11, no. 5 (May 2017).
PAGE 187 About 66 percent of the hospital’s patients hailed from Latin America: Anne Robinson (compliance and privacy officer, Olive View-UCLA Medical Center), email message to author, October 26, 2016.
PAGE 187 two-thirds of the patients at Olive View did not have health insurance: Esmeralda Bermudez and Alexandra Zavis, “Olive View Sees Healthcare Ruling as a New Challenge,” Los Angeles Times, June 29, 2012.
PAGE 187 A study published in 2018 looked closely at fifty of Dr. Meymandi’s patients: Colin Forsyth et al., “’It’s Like a Phantom Disease’: Patient Perspectives on Access to Treatment for Chagas Disease in the United States,” American Journal of Tropical Medicine and Hygiene 98, no 3 (March 2018): 735–41.
PAGE 189 raping the children, selling them to illegal adoption networks: Associated Press, “Soldiers Stole Children During El Salvador’s war,” February 22, 2013; and Larry Rohter. “El Salvador’s Stolen Children Face a War’s Darkest Secret,” New York Times, August 5, 1996.
PAGE 189 That’s when the letter from a blood donation center arrived: Maira was most likely part of a study led by the American Red Cross to assess the risk of T. cruzi among Latin American immigrant blood donors. David A. Leiby et al., “Trypanosoma cruzi in Los Angeles and Miami Blood Donors: Impact of Evolving Donor Demographics on Seroprevalence and Implications for Transfusion Transmission,” Transfusion 42, no. 5 (June 2002): 549–55.
PAGE 192 The few times major media outlets: Andrew Pollack, “Martin Shkreli’s Latest Plan to Sharply Raise Drug Price Prompts Outcry,” New York Times, December 11, 2015; and “‘Neglected Infections’ Resurface Among America’s Poor,” PBS NewsHour, transcript, PBS, aired October 27, 2009.
PAGE 192 Dr. Meymandi found that close to 14 percent: Sheba K. Meymandi et al., “Prevalence of Chagas Disease in Los Angeles Latin American Immigrant Population with Cardiomyopathy,” Journal of Cardiac Failure 14, no. 6S, suppl. (August 2008): S1–S128.
PAGE 192 A 2013 study in two New York City hospitals found similar results: Luciano Kapelusznik et al., “Chagas Disease in Latin American Immigrants with Dilated Cardiomyopathy in New York City,” Clinical Infectious Diseases 57, no. 1 (July 2013): e7.
PAGE 193 Dr. Meymandi and her colleagues tested close to five thousand people: Sheba K. Meymandi et al., “Prevalence of Chagas Disease in the Latin American-Born Population of Los Angeles,” Clinical Infectious Diseases 64, no. 9 (May 2017): 1182–88.
PAGE 195 about 7 percent of the Latin American patients with pacemakers: Sandy Park et al., “The Prevalence of Chagas Disease among Latin American Immigrants with Pacemakers in Los Angeles, California,” American Journal of Tropical Medicine and Hygiene 96, no. 5 (May 2017): 1139–42.
PAGE 196 Consider lymphatic filariasis, a disease caused by worms: “Lymphatic Filariasis,” World Health Organization, https://www.who.int/news-room/fact-sheets/detail/lymphatic-filariasis.
PAGE 196 The rate of people with the kissing bug disease had been on the decline: Kevin M. Bonney, “Chagas Disease in the 21st Century: A Public Health Success or an Emerging Threat?” Parasite 21, no. 11 (March 2014).
PAGE 196 The same was true of lymphatic filariasis: World Health Organization, “Global Programme to Eliminate Lymphatic Filariasis: Progress Report, 2016,” Weekly Epidemiological Record 92, no. 40 (October 2017): 594–608.
CARLOS
PAGE 207 One team of CDC experts and infectious disease specialists: Elizabeth B. Gray et al., “Reactivation of Chagas Disease among Heart Transplant Recipients in the United States, 2012–2016,” Transplant Infectious Disease 20, no. 6 (December 2018): e12996.
PAGE 208 There’s speculation that the drugs used to keep the body: Reinaldo B. Bestetti and Tatiana Theodoropoulos, “A Systematic Review of Studies on Heart Transplantation for Patients with End-Stage Chagas’ Heart Disease,” Journal of Cardiac Failure 15, no. 3 (April 2009): 249–55.
CHURCH BASEMENT
PAGE 215 Back in the 1980s, he had screened 205 people: Louis V. Kirchhoff, Albert A. Gam, and Flora C. Gilliam, “American Trypanosomiasis (Chagas’ Disease) in Central American Immigrants,” American Journal of Medicine 82, no. 5 (May 1987): 915–20.
PAGE 216 Blood banks do not check repeat donors: US Food and Drug Administration, Use of Serological Tests to Reduce the Risk of Transmission of Trypanosoma cruzi Infection in Blood and Blood Components (Silver Spring, MD: Office of Communication, Outreach and Development, 2017).
PAGE 216 The CDC considers a person to have the disease: Centers for Disease Control and Prevention, “DPDx - Laboratory Identification of Parasites of Public Health Concern,” updated April 30, 2019.
PAGE 217 The FDA would approve the first rapid test: Jeffrey D. Whitman et al., “Chagas Disease Serological Test Performance in U.S. Blood Donor Specimens,” Journal of Clinical Microbiology 57, no. 12 (November 2019).
PAGE 217 A few studies in Latin America produced mixed results: Claudia L. Sánchez-Camargo et al., “Comparative Evaluation of 11 Commercialized Rapid Diagnostic Tests for Detecting Trypanosoma cruzi Antibodies in Serum Banks in Areas of Endemicity and Nonendemicity,” Journal of Clinical Microbiology 52, no. 7 (July 2014): 2506–12; and Karina E. Egüez et al., “Rapid Diagnostic Tests Duo as Alternative to Conventional Serological Assays for Conclusive Chagas Disease Diagnosis,” PLOS Neglected Tropical Diseases 11, no. 4 (April 3, 2017).
PAGE 220 Where he worked was a region of South America: Peter Hotez, “Chagas Disease: The New Numbers,” Speaking of Medicine (blog), PLOS, March 3, 2015.
THE GREAT EPI DIVIDE
PAGE 225 In the eighties and nineties, thanks to activists: Nurith Aizenman, “How to Demand a Medical Breakthrough: Lessons from the AIDS Fight,” WBUR News, February 9, 2019.
PAGE 225 In 2016, the CDC estimated that one in two African American men: Centers for Disease Control and Prevention, “Half of Black Gay
Men and a Quarter of Latino Gay Men Projected to Be Diagnosed within Their Lifetime,” press release, February 23, 2016.
PAGE 225 More than half of all new HIV diagnoses occurred: Linda Villarosa, “America’s Hidden H.I.V. Epidemic,” New York Times, June 6, 2017.
PAGE 226 One explanation is that in the late 1990s, federal dollars: Villarosa, “America’s Hidden H.I.V. Epidemic.”
PAGE 226 As legal scholar Risha Foulkes has outlined: Risha K. Foulkes, “Abstinence-Only Education and Minority Teenagers: The Importance of Race in a Question of Constitutionality,” Berkeley Journal of African-American Law and Policy 10, no. 1 (2008): 3–51.
PAGE 226 Zach Parolin, a researcher on poverty and social inequality: Zach Parolin, “Welfare Money Is Paying for a Lot of Things Besides Welfare,” The Atlantic, June 13, 2019.
PAGE 226 The antibiotics so famously used in the US: Tracy Kidder, Mountains Beyond Mountains: The Quest of Dr. Paul Farmer, a Man Who Would Cure the World (New York: Random House, 2003), 126.
PAGE 226 Now the rate of tuberculosis in the United States is fifteen times higher: Rebekah J. Stewart et al., “Tuberculosis—United States, 2017” Morbidity and Mortality Weekly Report 67, no. 11 (March 23, 2018): 317–23.
PAGE 226 the people with tuberculosis who were born in the United States: Stewart et al., “Tuberculosis—United States, 2017,” 317–23.
PAGE 226 In 2015, tuberculosis outranked AIDS as the leading killer: Julie Steenhuysen, “Tuberculosis Now Rivals AIDS as Leading Cause of Death, Says WHO,” Reuters, October 28, 2015.
PAGE 226 two years later, New York City had its largest spike: Marcia Frellick, “New York City Has Biggest Tuberculosis Spike in 26 Years,” Medscape, March 27, 2018.
PAGE 227 The borough of Queens—where almost half of the people are immigrants: US Census Bureau, “QuickFacts: Queens County (Queens Borough), New York,” and New York City Bureau of Tuberculosis Control, Bureau of Tuberculosis Control Annual Summary, 2017 (Queens, NY: New York City Department of Health and Mental Hygiene, 2018).
The Kissing Bug Page 23