In his published article, Packchanian thanked several people. He thanked the state’s health department for the use of their labs and the superintendent of Austin State Hospital, Dr. C. H. Standifer, and also Dr. Zedler for “valuable clinical assistance in this case.” The American Journal of Tropical Medicine and Hygiene published his article without comment.
PHARMA BRO
A year after my trip to Colombia, I obsessively dug into more historical texts about the kissing bug disease in the United States. I also interviewed experts, including cardiologists and an epidemiologist, and I published a piece online with The Atlantic about the disease. I wasn’t the only one at work. My sister had moved to Virginia where the Latinx population had doubled between 2000 and 2010. She teamed up with advocates to convince the state legislature to pass a bill designating April 14 as Virgnia’s “Chagas Disease Awareness Day.” It was the date Dr. Carlos Chagas had first identified the parasite in the toddler Berenice.
I landed in Ohio for a teaching job, renting an apartment in a Cincinnati neighborhood lit by gas-fueled lamps, and often late into the evenings, I read the news online, which is how I first learned about the pharmaceutical executive Martin Shkreli. Newspapers had nicknamed him “the most hated man in America,” and Donald Trump, then the leading Republican presidential candidate, had commented that the young man “looks like a spoiled brat.”
In the fall of 2015, Shkreli’s company hiked the price on the drug Daraprim from $13.50 to $750 a pill. Doctors prescribed this drug for toxoplasmosis, a parasitic disease I knew as the “cat litter disease.” Although I had never been pregnant, I often noticed the labels on litter boxes warning pregnant women about handling cat litter on account of a parasite that cats can shed in their feces. Usually a person’s immune system effectively battles this one-celled parasite, but it can turn fatal in babies or HIV-positive patients with weakened immune systems. Like the kissing bug disease, toxoplasmosis is linked to poverty and communities of color. Immigrants, Black Americans, and those with low incomes are more likely to have the disease. The drug Daraprim can save lives, but Shkreli’s new pricing was putting it out of reach.
Everyone, it seemed, expected Shkreli to apologize and lower the drug price. He did not. He went on Bloomberg Television and defended the price increase. He showed up at the Forbes Healthcare Summit, and when asked what he would have done differently, he said, “I would have raised prices higher.” He then spent $2 million on the only existing copy of a Wu-Tang Clan album and said he would play the album for a particular female singer in exchange for oral sex. On social media and in news accounts, Shkreli became known as the “pharma bro.”
Shkreli was not the only executive guilty of raising drug prices by horrifying amounts. That same year, executives from Valeant Pharmaceuticals (now Bausch Health Companies) jacked the prices on the heart drugs Isuprel and Nitropress by 525 percent and 212 percent respectively, and Rodelis Therapeutics increased the price of a tuberculosis medication from $500 for thirty pills to more than $10,800 (the latter company reversed course when the news became public). A year later, the pharmaceutical company Mylan notoriously hiked the price on the EpiPen from $100 to more than $600 for two doses.
I suspected the reason Martin Shkreli bothered me and a good number of other people was that his price increase, and his arrogance, underscored a political reality: as Americans, we have choices about whom we take care of when it comes to health care and drug prices, but the ways to exercise these choices—by voting the right candidates into office and making demands of our elected officials—often feel intangible. Rather than organize for political change, it is easier to hate a young man who twirls a lock of brown hair on his forehead and makes vile sexual statements—a man who, in the summer of 2015, at the age of thirty-two, could with his words alone generate millions of dollars from investors and stop people from getting necessary, lifesaving drugs.
Martin Shkreli did not lower the price on the drug Daraprim, and a few months later, he came after benznidazole—a drug used to battle the kissing bug disease.
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The World Health Organization considers benznidazole an “essential medicine,” a treatment critical for global public health. The drug can often eradicate the parasite when a person first contracts it, and it can also do this, after the acute stage, for infected newborns, children, and teenagers. Studies have also found that women treated with benznidazole before pregnancy are less likely to pass the parasite to their children in utero.
Most people who have the kissing bug disease are in the chronic stage—many have been living with it for decades. Benznidazole, which interferes with the parasite’s protein synthesis, reduces the parasite load in a person’s body, and this might explain why an observational study in Argentina suggested that the drug helps people who are infected with the parasite but have not yet developed heart failure. The study that Professor Guhl had been working on—the first double-blind study of benznidazole and one that involved multiple countries—revealed that once the parasite has infiltrated a person’s heart and begun to cause damage—and this can happen decades after the infection—the drug does not save the heart.
In 2015, benznidazole was not approved by the US Food and Drug Administration (FDA) so a person could only receive the drug by way of the CDC under certain protocols, and few people did. One study led by a clinical fellow from Harvard Medical School found that only 422 patients in the United States got the medication between 2007 and 2013, though an estimated three hundred thousand people here have the disease. It wasn’t that the CDC denied a high number of requests. Most of these people didn’t know they were infected. They were not sick nor were they screened. Tía Dora never took benznidazole. When she was alive, we didn’t know it existed.
After raising the price on Daraprim and buying the Wu-Tang Clan album, Martin Shkreli bragged to investors that his company would convince the FDA to approve benznidazole in the United States. He boasted that this would generate millions of dollars in profit because the federal government had a financial incentive in place for pharmaceutical companies to bring drugs to the market for certain rare or “orphan” diseases. In filings with the Securities and Exchange Commission, Shkreli’s company said it would price benznidazole similarly to medications for hepatitis C, which ran close to $100,000 for a course of treatment.
In South America, the cost of treatment with benznidazole was between $50 and $100. The CDC, when it sent the drug to physicians in the United States, charged nothing. It also didn’t charge for another drug, nifurtimox, that was also used to treat people with the kissing bug disease. This drug was often not as well tolerated as benznidazole but the pharmaceutical Bayer had been donating the drug to the World Health Organization since 2002.
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I have to guess that Martin Shkreli did not like the article I wrote about him for The Atlantic, in which I pointed out the racial impact of what he was proposing to do. He wanted to price a drug at close to $100,000 for a disease that mostly afflicts poor Latinx immigrants in the United States. He tweeted a single word at me after the article was posted: “Really?”
Part of me wanted to call him out on social media. Part of me realized that it was an opportunity for an interview. A Twitter exchange would be an imperfect interview, but my calls to Shkreli’s company had not been returned. “Why up the price?” I asked him over Twitter, and he tweeted back: “Not FDA approved.” I pointed out that he did not have to hike the price. He wrote back a painful and simple answer: “There is not a current price in the US for benznidazole.” So he could set one.
Investors gave his company $8 million in the hopes of getting FDA approval for benznidazole.
The morning after Shkreli and I exchanged tweets, the FBI arrested him in his Manhattan apartment on charges of securities fraud. Harper’s documented how Shkreli’s notoriety made for difficult jury selection at his trial. One juror had a mother, grandmother, and brother with lifelong health issues that required access to medicat
ions, and the juror didn’t think it would be possible to remain unbiased. Another juror, speaking of Shkreli, said, “I think he’s a greedy little man,” and a third juror said, “He kind of looks like a dick.” More than two hundred people were excused from jury duty.
Shkreli’s arrest did not stop his pharmaceutical company. It got a new president and later a new name, and the new president declared that he would continue to pursue FDA approval for benznidazole.
HUNTING FOR THE KISSING BUG
When I was in eighth grade, I read a library book on dream interpretation. I took notes and trained myself to read symbols, and over the years, I found I had a knack for it. I could hear a person’s dream and translate the images and scenarios into information about their emotional life. The key was knowing that images are flexible. It’s like reading a novel or a poem and unpacking the metaphorical meanings of broken teeth and rooms without doors.
The women in my family, however, believe in prophetic dreams. For them, dreams are screened-in porches during the summer: gathering places with loved ones. It does not matter if the person is dead. The muertos talk in dreams. Angels too. Messages are delivered in dreams, sometimes in a gesture, sometimes in whispered words, sometimes in a single image.
A year or two after Tía Dora’s death, my sister phoned me. “I had a dream,” Liliana said, her voice panicked. “Tía looked at me but she didn’t say anything.” My sister had had several dreams like this, where our auntie refused to speak to her. What could it mean?
I reached for my authoritative older sister voice and said, “You’re probably needing to feel close to her.” I did not share that my auntie’s silence in the dream served as a painful reminder that my sister could not be in communication with her anymore.
Liliana sighed over the phone. She wanted to talk with a woman like the ones my mother and tías visited when we were growing up, a woman whose Spanish came straight from the Caribbean, whose living room boasted statues of saints and tarot cards, a woman with a booming voice and a wide neck who would hear the dream and declare, “Dora is protecting you! She is watching over you.”
Such a woman would have sent us home with remedios: Place a candle next to Dora’s picture. Pray the Hail Mary seven times for the soul of Dora. Crack an egg over a cup of water, and after the yolk slips into the water, write Dora’s name on a piece of paper and put that in the water too.
Such rituals served as a reminder that every woman has power even against death.
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I was not thinking about dreams when I reached College Station, Texas, and phoned Auntie Biblia in South Florida. I had told her only that I was planning to interview people about the kissing bug disease. I had not told her that I was going to spend a few hours trying to trap kissing bugs with researchers from Texas A&M University. Or that if we caught an insect, it might be infected with the parasite that had killed Tía Dora. I did not mention to my auntie that I had checked all the corners of the hotel room because kissing bugs are known to come into houses at night during the summers in Texas, as they do in Arizona and parts of the South.
“I had a dream,” Auntie Biblia said. “You were eight years old and in a classroom with your book bag, and Dora was saying, ‘Be careful.’”
Auntie Biblia, I understood, was anxious. I was studying the disease that had killed her sister, and dreams do not traffic in the reasonable. The common language of dreams is our fears.
But after Auntie Biblia told me her dream, I remembered my leather satchel from Colombia, which I carted around our neighborhood in New Jersey when I was in kindergarten. It had a stiff bottom and soft straps and the letters A, B, and C stenciled on the front in vibrant colors. I remembered the satchel and how when I was five years old I thought Tía Dora knew everything about the world.
I forgot about dream interpretation and checked that I had bought the heavy-duty bug spray. I peered under the hotel bed and in the bathroom. I recalled what the young Texas A&M research assistant had told me over the phone: the surest way to catch a kissing bug in Texas is to sit in a field when the sun falls behind the brush. The insects will come, tempted by the best possible bait—the warmth of your own body.
It was clear to me now that after visiting Professor Guhl’s insect colony I had begun to change somehow. I stopped wincing when I spotted photographs of kissing bugs in science articles, and I even began looking for the images, which was how I came to know that one species of kissing bug in Central America, Triatoma dimidiata, often appears like an elongated copper coin with black stripes along the outer edges of its back. A species common in Texas, Triatoma sanguisuga, has the inverse: a dark body with reddish-orange stripes at its back’s rim.
This new obsession with the bodies of kissing bugs did not strike me as odd. Grief had done stranger things to other women, pushing them into depressions and bad makeovers and beds that did not belong to them. I was merely spending the night in search of a little beast with a striped skirt.
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The hunt for kissing bugs started at dusk on the Texas A&M College Station campus. I arrived dressed for a safari in a breathable pink button-down shirt and cargo pants with enough pockets for pens, notebooks, and my cell phone. The two research assistants, both young men in jeans and T-shirts, appeared ready for a night at the local bar. One wore cowboy boots, the other a baseball cap.
We gathered at a building that looked like a long shed. “This is bug-trapping headquarters,” joked Adam Curtis, the assistant with the baseball cap. Inside, the room was narrow and well lit. Several university researchers used the room to store equipment for different studies, and the shelves were stocked with headlamps, markers, Velcro straps, and coolers. A basket on the floor teemed with light bedsheets wrapped around poles for collecting ticks. A few nets leaned against the walls for catching bats. At the back of the room, a freezer held the carcasses of dead sandhill cranes.
In a side room, what I first thought were bars of clear soap scattered across a worktable turned out to be dead kissing bugs trapped in resin: their weak legs splayed, their needle mouthparts tucked under their heads, their translucent wings gathered. The researchers planned to use these insects as educational props, to teach people how to identify kissing bugs. They were also trapping kissing bugs across the state to map where specific species are found and to see how many are actually infected with T. cruzi.
Adam had a narrow, solemn face and a headlamp clipped to the lip of his baseball cap. He had started trapping kissing bugs in high school when his older sister, a graduate student here, had dragged him out of Pennsylvania and brought him south for the summers. Now he was a junior and had the distinction of being one of the youngest kissing bug hunters in the United States. He preferred catching these insects by camping out. “They’re like a stalker bug,” he had told me earlier. “They’ll come and sit on the tent ’cause they know we’re there.”
Adam clicked open a toolbox the color of onyx. Inside were black lights: four thin and long bulbs whose ultraviolet light would hopefully lure the bugs.
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I had traveled to Texas A&M University at College Station because of the work of Dr. Sarah Hamer, an associate professor at the university’s College of Veterinary Medicine and Biomedical Sciences. In 2013, she and her team screened more than two hundred shelter dogs across Texas and found that close to 9 percent tested positive for T. cruzi. In some places, like San Antonio, the number of infected dogs was closer to 14 percent. “The major takeaway, at least with canines, is that this is widespread,” she told me in her office.
When—and if—the symptoms of the kissing bug disease show themselves, the dog becomes lethargic, has difficulty breathing, and develops a distended belly. It loses interest in meals and walks. A blood test can reveal antibodies to the parasite. An X-ray of the dog’s chest can show the worst of it: the heart ballooning inside the body, losing its shape.
Dr. Hamer’s study was not the first that had screened dogs in Texas for the kissing bug disease. In the
late 1970s, the state’s health department and Pan American University found a similar infection rate among stray dogs in the state’s two most southern counties. Almost thirty years later, in 2008, Sonia Kjos, an entomologist at Texas A&M University, and her team published a study of dogs and the kissing bug disease in Texas that spanned more than a decade. They estimated that based on tissue samples, clinical records, and screening tests, about 20 percent of dogs in Central and South Texas had the disease. Infected dogs have also been found in Oklahoma, Louisiana, and Virginia.
Texas is large enough that you can drive more than eight hundred miles in a single direction without leaving the state. Dr. Hamer’s study stood out because she found that the kissing bug disease was not limited to South Texas. The dogs in her study came from seven shelters across the state, covering almost a dozen ecoregions. Did this mean that the kissing bug disease was on the rise in Texas, or had it always been this widespread among dogs there and no one knew because researchers had not looked farther north in the state? Dr. Hamer couldn’t say, but she did tell me that “we have a lot of canine Chagas. That’s not happening in other states.”
The disease was also being found among people who had most likely been infected from kissing bugs native to Texas. In 2015, Melissa Nolan Garcia, an epidemiologist at Baylor College of Medicine in Houston, identified five blood donors in Texas who tested positive for T. cruzi and who had never traveled outside of the United States. Three of the donors had EKG abnormalities usually found when the parasite has begun its attack on the heart. “It indicates that we really do have a problem,” she told me during a phone interview.
I called Caryn Bern, a professor in epidemiology at the University of California, San Francisco, who has been studying the kissing bug disease for decades in both the United States and South America. She didn’t think there were more cases of the disease here, only more people studying it now. “If you don’t look for it, you’re not going to find it,” she said.
The Kissing Bug Page 8
