The Brief

When Maira Gutiérrez was diagnosed with Chagas disease in 1997, neither she nor her primary care physician had even heard of the malady. She discovered her illness only by chance, after participating in a Red Cross blood drive organized by her employer, Universal Studios.

Red Cross tests donated blood for a range of diseases, including Chagas, which is caused by a parasite and can develop silently for decades before causing symptoms. The test detected Chagas in her body, and an MRI years later, in 2013, confirmed it had reached her heart.

“They showed me the image with the trace of the parasite to my heart. It was really scary,” Gutiérrez, originally from El Salvador, said in Spanish. Now 50, she remains healthy but undergoes a battery of tests annually to monitor for heart damage.

Trypanosoma cruzi, the parasite that causes Chagas, is transmitted through an insect called the triatomine bug, known as the kissing bug because it usually bites close to the lips. The bugs defecate on the skin, and the feces, which can contain the parasite, can enter a person’s body through the nose, mouth, or breaks in the skin.

Chagas in the U.S.

Chagas disease affects people primarily in rural Latin America, where the insect thrives in thatched roofs and mud walls. It is not transmitted from person to person, except for a mother passing it to a newborn, or through blood transfusions or organ transplants.

But it’s increasingly present in the United States, where it often goes unrecognized: The Centers for Disease Control and Prevention estimates more than 300,000 people living in the U.S. have Chagas, though lack of awareness and testing means only 1% of cases have been identified.

Doctors, researchers, and patient advocates say the nation could be doing far more to combat Chagas, which causes serious heart disease in an estimated 30% of infected people and can also lead to crippling digestive problems such as enlargement of the esophagus and colon. They are pushing for increased access to testing and treatment and are optimistic about a new drug that’s set for human trials next year. A bill in Congress to up funding for rare diseases, which supporters hope will be debated in the fall, could help too.

'Tremendous lack of awareness'

Still, in the U.S., there is “a tremendous lack of awareness about this disease,” said Rachel Marcus, a cardiologist and the medical director of the Latin American Society of Chagas, who runs a Chagas testing clinic in northern Virginia. “We were taught that it is something we don’t see in the United States.”

Left: Ronald Drew Etheridge, an assistant professor at the University of Georgia, studies the molecular tools used by the Trypanosoma cruzi parasite to make itself at home in various target environments. He is holding the kissing bug’s favorite food: blood. Right: Maira Gutiérrez discovered she had Chagas disease when she donated blood to the Red Cross in 1997. She struggled to find a doctor who knew something about the condition.

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Paula Andalo (L) and Carmen Echeverria (R)

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KFF Health News

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A large proportion of those with Chagas are from Latin America, and many are living in the U.S. without legal permission. Marcus notes that many of those most at risk from Chagas use community health centers that could be testing sites but have limited resources, and tend to focus on more common conditions such as high blood pressure and diabetes.

Chagas initially produces flu-like symptoms but can then go unnoticed for decades while it reproduces in the body. Drug treatments can sometimes eradicate the parasite, especially in its first stages, but the window for early detection is short: It does not stay in the bloodstream for long, instead migrating to tissues and organs, where it is harder to detect.

Often by the time a patient sees a doctor, that person has already developed serious complications, including heart rhythm abnormalities or a dilated heart that doesn’t pump blood well. Patients may eventually need pacemakers or heart transplants.

“It is a disease resulting from systemic failures in the health care system,” said writer Daisy Hernández, author of “The Kissing Bug: A True Story of a Family, an Insect, and a Nation’s Neglect of a Deadly Disease.”

In her book, Hernández tells the story of her aunt Dora, who was diagnosed with Chagas in the U.S. Before, in her country, Colombia, she had an exploratory surgery because of a swollen stomach and the doctors told her that she had “the intestines of 10 people” due to the amount of inflammation. No one suspected it could have been caused by the Chagas parasite.

Hernández said interviews with over 70 doctors and patients convinced her that the real barrier to Chagas care is inaction.

“While a person living in Virginia who is originally from Bolivia [where Chagas is endemic] knows that if diagnosed with Chagas, they should start saving up for a pacemaker,” Hernández said in Spanish, “here, the government does nothing and doesn’t even know what the disease is.”

Combatting the disease

Between 6 and 7 million people worldwide live with the parasite. In the U.S., two long-standing drugs have had FDA approval: benznidazole and nifurtimox, which can beat back the parasite but don’t always eradicate it. The medications can have serious side effects, and are most effective if given early: Babies born with Chagas have a 90% cure rate if treated within their first year of life.

To combat the disease, doctors familiar with Chagas recommend testing pregnant women from at-risk communities and urge earlier treatments. They also advocate screening all transplant organs. In 2018, a Connecticut man died after receiving a heart infected with the Chagas parasite, prompting a lawsuit and calls for mandatory organ screening. The organization that governs transplant policies in the U.S. recently voted to require such testing.

The infected “kissing bugs” sleep in the plastic container for two or three minutes.

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Paula Andalo

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Few facilities in the country screen for Chagas. Advocates say that with greater awareness, many healthcare providers could conduct initial screenings and, if positive, send results to the CDC for confirmation.

However, building awareness has been an uphill battle. The Center of Excellence for Chagas Disease, the only center in the U.S. dedicated to Chagas diagnosis and treatment, recently suspended operations after its longtime director, Sheba Meymandi, retired.

A pioneer in the diagnosis and treatment of Chagas, Meymandi said she is still working as a volunteer at Olive View-UCLA Medical Center in Los Angeles, where the center was based, to ensure her patients receive care.

“The political leadership has stopped supporting the center, and we no longer actively conduct tests,” Meymandi said. Now, she refers Chagas patients to the cardiology clinic.

A spokesperson for the county’s Department of Public Health wrote in a statement that the center is not technically closed, and that treatment of Chagas patients with heart conditions had been taken over by the cardiology department at the UCLA hospital. But at least for now, it is not offering general screening for Chagas infection. California has the most Chagas cases of any state.

Hope for the future

Another hope for beating Chagas lies in new drugs. Rick Tarleton, the head of the Tarleton Research Group in the University of Georgia’s Department of Cellular Biology, said his group had collaborated with Anacor Pharmaceuticals to identify and optimize compounds that could kill the T. cruzi parasites. They had found one.

“It could completely eradicate the infection in mice and in nonhuman primates,” Tarleton said.

The team tested the compound on 19 macaques at a research center in Texas that had acquired the parasite naturally. The infection was defeated, the monkeys had no significant side effects, and they are still clinically healthy after more than five years.

Left: Ruby Harrison, a postdoctoral fellow at the University of Georgia, puts triatomine bugs infected with T. cruzi parasites to sleep with gas. Right: Rachel Marcus, a cardiologist and the medical director of the Latin American Society of Chagas, runs a Chagas testing clinic in northern Virginia. “We were taught that it is something we don’t see in the United States,” she says.

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Paula Andalo

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Tarleton’s team also observed that some of the parasites can become dormant, making them resistant to drug treatment. As a result, Tarleton said, it’s critical not only to develop more effective drugs but to optimize timing of treatments.

Tarleton and his team hope to launch a clinical trial of the compound next year.

There is also some hope on the political front. Sen. Cory Booker (D-N.J.) reintroduced the Study, Treat, Observe, and Prevent (STOP) Neglected Diseases of Poverty Act in February to address the growing health problem posed by maladies like Chagas spreading in low-income communities. The list also includes dengue fever, leprosy, and chikungunya.

“Whenever we go into low-income communities and look for these illnesses, we usually find them,” said Peter Hotez, who worked with Booker’s office on the legislation and is the dean of the National School of Tropical Medicine at Baylor College of Medicine. “Tragically, too often our nation ignores or neglects these communities, and we fail to look.”

Meanwhile, Maira Gutiérrez, the patient who was lucky to have a diagnosis and a consistent treatment, has some advice for them: “Donate blood; at the very least, you’ll know if you have the parasite, and it’ll cost you nothing.”

Flies, rodents and other pests have been a persistent problem in Boyle Heights and nearby communities as millions of tons of food rot in a nearby burned-out warehouse. It’s gotten bad enough that L.A. Mayor Karen Bass is asking for action from the L.A. County Department of Public Health.

In a letter sent Tuesday to county Public Health Director Barbara Ferrer, Bass said she’s “concerned with County DPH’s pace in addressing this disaster” and the risks it posed to health and quality of life.

“Possibly the worst manifestation of these risks is the severe infestation of flies in Boyle Heights and neighboring communities,” Bass wrote.

LAist has asked the Department of Public Health for comment and will update this article when they respond.

The back-and-forth between jurisdictions

Bass wrote that the city of L.A., which does not have its own health department, is largely dependent on L.A. County for control of potentially disease-carrying vectors. The city has said elsewhere that its Sanitation Department did set about 250 rat traps in surrounding areas.

Bass’ letter says the county took its first steps to hold Lineage accountable for a fly infestation on July 17, ordering Lineage to remove flies and mosquitoes from the warehouse.

“Although I appreciate that County DPH has taken this first step, the County’s report only directs Lineage to eliminate flies from Lineage’s own property,” Bass’ letter to Ferrer states.

Bass urged the county to compel Lineage to address pests at neighboring properties “with aggressive measures to eliminate the flies and any other vectors.”

As for L.A. County’s Department of Public Health, a spokesperson told LAist on July 17 that it had itself directed the city and Lineage to address the pest situation.

“Los Angeles County Department of Public Health requested that both Lineage Logistics and the City of Los Angeles develop and implement a vector/insect control plan,” the statement reads.

Lineage’s part

According to Councilmember Ysabel Jurado, who represents Boyle Heights on the L.A. City Council and met with Lineage representatives on Monday, an inspector contracted by the company confirmed that the rotting food at the warehouse is serving as a breeding ground for flies. The infestation won’t go away without addressing the root cause, Jurado reported the contractor as saying.

“Removing waste, adding odor-control equipment, and conducting a pest inspection are important,” Jurado said in a statement. “But residents are asking a more fundamental question: Are conditions actually improving? They deserve evidence, timelines and accountability — not just a list of activities.”

Lineage has not yet presented its pest control plan to the public.

A ticking clock

The first day of instruction for L.A. Unified schools is Aug. 12, three days before the city’s current deadline to clear the warehouse — a deadline Lineage does not appear to be on track to meet.

That’s led many teachers and parents to raise the alarm about smells and pests that may very well still be around when school starts. An LAUSD spokesperson told Boyle Heights Beat that it is prepared to temporarily relocate nearby schools, as they did with summer programs during the warehouse fire.

Lineage meets deadline at last minute

Meanwhile, Lineage also faced a deadline of Tuesday to present a plan to air quality officials on how to address smells. A South Coast Air Quality Management District spokesperson said that the agency received a response from Lineage at 5 p.m. and is evaluating it.

L.A.’s homeless services agency has not completed any internal audits in years — and one that was started two years ago is still incomplete because management is taking months to provide responses, officials said Monday.

The delayed audit has been looking into why the L.A. Homeless Services Authority, known as LAHSA, failed to spend $7 million in federal dollars it was granted to house and serve people in need. The roughly six-page audit report hasn’t been released because it’s missing LAHSA management responses that were requested over two months ago, officials said.

Internal audits are considered critically important to protecting taxpayer dollars at every level of government. L.A. County auditors, for example, issued about 100 reports in a recent fiscal year.

“ We haven’t gotten anything,” said Erum Shahnawaz, LAHSA’s chief internal auditor, referring to the lack of response from LAHSA management at a meeting of the agency’s audit committee on Monday.

“That’s the only thing that's holding us from issuing the final report,” Shahnawaz said of the underspending audit.

That audit is examining a repeat problem. A previous, external audit in January 2022 found LAHSA had left $3.5 million in federal grants on the table by not using them.

Shahnawaz flagged management’s delays to the LAHSA Commissioner Justin Szlasa, Szlasa said. He chairs the commission’s audit committee, and has repeatedly called out LAHSA executives’ delays in providing information about taxpayer spending over the past year.

“ I've been trying to intervene and use whatever I can to try to help provide support,” said Szlasa as he described his attempts to get the auditor the answers needed to complete the report.

Szlasa was appointed to the commission by L.A. County Supervisor Kathryn Barger.

 “It shouldn't take us two months to receive a…management response to an internal audit,” Szlasa said at Monday’s meeting. He said the industry standard for internal audits is eight or nine weeks from start to finish. That compares to the two years — and counting — for LAHSA’s federal underspend audit.

“We haven't had a single internal audit completed here in the last couple of years, which is nuts,” Szlasa added. He called for internal audits to happen much more frequently.

Long delays to LAHSA audits also are not new. In November 2024, the county issued a widely-seen audit that included findings that LAHSA was failing to complete internal audits.

Half of LAHSA’s governing commission is appointed by L.A. Mayor Karen Bass and half appointed by each of the five county supervisors. Bass is also the only elected official on the commission. She served on the audit committee for several months last fall. Records show she was absent for all of the meetings during that time.

Janine Lim, LAHSA’s deputy chief financial officer, said management’s responses to the audit on underspending haven’t been provided yet because LAHSA leadership did not have clearly defined roles for who is supposed to coordinate responses to internal audits.

“ We need to work on clarifying that role internally,” Lim said.

 “The last two months have been probably some of the most stress-filled two months that we've had at LAHSA,” said Paul Rubenstein, chief of staff to LAHSA CEO Gita O’Neil, pointing to mass layoffs.

Szlasa said there’s not that much in the audit for management to respond to.

“It's like, six pages or less,” he said.

Szlasa said  another option is to “just say we've asked management for responses and we're awaiting management response. We can publish the results.”

In response, Shahnawaz said that if management doesn't have an updated timeline for a response, then she’ll go ahead and issue the report without the response.

Once they floated that idea, Lim committed to providing the responses by next Tuesday.

LAHSA’s leadership has downsized the internal audit team — dropping from a staff of three to just one in the agency’s proposed budget up for approval Friday.

Delays in getting access to financial records

The delayed responses from management are not the only thing that’s been slowing down audits, Szlasa said at the meeting.

LAHSA policy, approved by its governing commission, says internal auditors are “ authorized to access all organizational records, personnel, and systems necessary for conducting audits,” he said.

But the auditor has faced challenges in actually getting that access, Szlasa said — including delays in being allowed to view LAHSA’s databases that show contracts and financial payments.

 ”We finally were granted access, but it wasn't, it wasn't easy, it wasn't immediate. It was slow,” Szlasa said.

Many failed outside audits

The delays on the internal audit come even after LAHSA failed multiple external audits in recent years, which have found the agency — overseen by city and county elected officials — has neglected to properly track billions of dollars in spending.

Largely in response to earlier audits, L.A. County supervisors pulled funding from LAHSA and are having the county instead oversee it directly. L.A.’s mayor and City Council have continued to have LAHSA manage the city’s homeless spending while the council delays plans to start studying a possible plan to transition away city tax dollars.

Signatures under scrutiny

LAHSA is also in the midst of a different internal audit — expected to finish in late August or early September — examining whether top officials followed requirements when signing contracts and letting others sign. It was launched in the wake of LAist reporting that found LAHSA’s then-CEO Va Lecia Adams Kellum’s signature finalized a $2.1 million contract with her husband’s employer.

LAist also discovered Adams Kellum’s signature, as LAHSA’s CEO at the time, finalized a quarter-million-dollar contract between LAHSA and a longtime service provider she led up until two months earlier.

That contract was signed so soon after she left the service provider — St. Joseph Center — that the contract paperwork still listed her as one of St. Joseph Center’s points of contact and authorized signers.

She is currently under a state ethics investigation into whether her actions were an illegal conflict of interest.

When Bengara opened in Los Angeles' Arts District earlier this year, its owner and head chef had something special lined up in their kitchen arsenal.

It was genshiyaki, a rare traditional Japanese grilling method that dates back 1,500 years.

Chef and co-owner Tyler Burges had only encountered it once while traveling in Japan at a robatayaki spot in Fukuoka, a port city on the island of Kyushu.

Robatayaki, a style of slow, ember-cooked grilling rooted in Japan's rural coastal kitchens, usually centers on an open charcoal hearth. But the restaurant Burges visited had something even more noteworthy: a genshiyaki pit, a gentler, ambient method of cooking that uses radiant heat instead of direct flame.

Loving the unusually subtle, delicate flavor and texture it produced, he and head chef Phil Mireles decided to bring genshiyaki back to the U.S. and build their Arts District restaurant around it. The genshiyaki pit is a rare enough technique that Burges had to work with fabricator Phil Roxworthy for six months just to get the grill built to spec.

It's Burges' and Mireles' first L.A. project. The pair are also behind Smoke Door, their acclaimed Lake Tahoe restaurant, and Bengara brings a more casual, day-to-day take on the same fire-driven cooking.

All roads lead to the Arts District

Chef/owner Tyler Burges (left) and head chef Phil Mireles at Bengara.

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Wonho Frank Lee

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Courtesy Bengara

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Burges and Mireles both got their start at San Francisco's Saison and Angler under chef Joshua Skenes — who's now just down the street in L.A. at LYNX with fellow alum Brandyn Tepper.

Burges traces Bengara's DNA back to two mentors: Ron Siegel, who introduced him to Japanese ingredients and technique in his mid-20s, and Skenes, who taught him to cook with live fire. It was Skenes, Burges said, who showed him that fire didn't have to mean char and bravado.

"The one thing I loved about wood-fire cooking is you get this subtle, sweet barbecue flavor when you cook correctly over embers, and you don't cook directly over the fire," Burges said. "Most places, when you think about grilling something, you think of char, bold flavors, masculine flavors. But Chef Josh — it's like a master art, getting really delicate, subtle flavor using that grill method."

The uni kiritampo, Bengara's take on a traditional Akita-prefecture rice skewer, finished with scallion.

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Wono Frank Lee

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What sets the food apart

Take their luscious miso cod. On a normal grill, the marinade's sugars would blacken before the fish cooked through. On the genshiyaki pit, the cod sits at a distance from the embers, cooking gently until the very end, when it's given one last pass directly over the coals — what Burges describes as a final "kiss" of heat before it hits the plate.

To fuel genshiyaki's slower, ambient style, ordinary charcoal or wood is replaced with binchotan, an ultra-dense, pure-carbon hardwood charcoal traditionally made in Japan, which burns hotter and cleaner.

The signature dish

A perfect example of how this cooking style comes together is the uni kiritampo, the Akita prefecture rice skewer, reimagined with uni and cooked via genshiyaki — born of an offhand kitchen conversation with one of the restaurant's Japanese chefs about regional dishes cooked over fire.

Once they realized genshiyaki was the dish's original, historic cooking method, the rest fell into place.

"It's like the most delicious thing," Burges said. "I don't know why it never made it over to the United States earlier."

Bengara's Arts District dining room pairs industrial bones with warm, low lighting and long communal tables.

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Wonho Frank Lee

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Courtesy Bengara

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The chewy exterior, with just a hint of smoke, gives way to a creamy inside, like a caramelized custard, that’s topped with a decadent amount of uni, providing a semi-sweet finish — one memorable bite.

Tasting menu option

Bengara recently added a daily eight-course tasting menu ($98) that doubles as a greatest-hits tour of the kitchen — Toyosu carpaccio with chili coffee oil, pork belly "tacos" wrapped in mochi crepes, miso cod, Mary's half chicken, and handmade citrus soba, with optional wagyu and uni add-ons.

The price includes a beverage pairing, with a full non-alcoholic option alongside the boozy version. Walk-ins are welcome, and reservations can be booked via OpenTable.

Topline:

Why it matters: Museum officials said you will “likely experience high demand and long wait times in the queue" and thanked people for their patience.

LAist saw estimated wait times up to 6 hours, and it took a little more than 4.5 hours for this reporter to get through. On the bright side, there were still plenty of tickets left, including for the first day. Do not refresh the page or you may lose your spot.

The details: All tickets are timed entry. Tickets are $25 for adults and $21 for those 65 and older. Children, members, active-duty military, personal aides or attendants and EBT cardholders have free entry. Museum neighbors in the LM37 program will also be free, with that pass opening in August.

But how do I buy: Each person is limited to nine tickets, and you’ll have 20 minutes to check out once they’re added to your cart, according to the museum. You can find the link here.

What's next: The grand opening is Sept. 22.

Go deeper: How to secure Lucas Museum of Narrative Art tickets ahead of the fall opening