Spanish version here.
SAN JUAN, PUERTO RICO — Jhon Alberto Hernández Núñez fell ill about a week after Hurricane María devastated the island of Puerto Rico on September 20, 2017.
A 34-year-old electrician, he sought medical attention to alleviate symptoms of a stomach ache, vomiting, fever, muscle and joint pain at more than one hospital near his hometown of Dorado, but he never got a clear diagnosis for what was making him sick.
Days later and desperate to get him medical attention, his 94-year-old grandmother, Adelina Santana, asked neighbors to help carry Hernández, who was six-feet, four-inches tall, and drive him to Manatí Medical Center.
Hernández died there on October 4. He left two children, ages 10 and 7.
On December 19, 2017, José Ernesto Merced Álamo of Aguas Buenas was supposed to be celebrating his birthday.
But in the days preceding the big day, Merced went to a local emergency care unit complaining of high fever, weakness and chills. Medical staff concluded that he had a urinary tract infection, gave him antibiotics and sent him home. Three days later, Merced suffered a stroke.
At the hospital, healthcare providers conducted several diagnostic tests. Soon, his lungs collapsed and he fell into a coma the following day.
Merced died on the day he was supposed to turn 55.
His wife and daughter were devastated and shocked to lose the family patriarch so unexpectedly.
“It was a horrible experience,” his daughter Lisandra Merced Ortiz said.
Six months after the storm, Saturnino Figueroa Montes, 64, spent two weeks fighting something doctors couldn’t diagnose after conducting multiple tests. A retired carpenter of Mamey, a rural neighborhood in Patillas, he went into cardiac arrest after he was hospitalized.
Figueroa Montes died on March 6, 2018. He left a large extended family, two adult children, and five grandchildren.
Hernández, Merced and Figueroa were among at least dozens of people who contracted leptospirosis, a disease caused by the leptospira bacteria, which spreads primarily through soil or water containing the urine of infected animals such as rodents, farm animals, dogs and wildlife. The bacteria survives for months, and any flooding, such as one finds in the aftermath of a hurricane, can help it spread.
Humans become infected when the bacteria enters the body through any skin abrasion or contact with a mucous membrane, like the eyes, nose or mouth. Drinking or bathing in streams and waterways, even if they appear to be clear water, can also be a source of infection. In its early stages, it has flu-like symptoms and can be cured with antibiotics, but when left untreated, can lead to major organ failure and death.
When people showed up at clinics, emergency rooms and hospitals complaining of high fever, muscle and joint aches, nausea, vomiting and stomach pain among other symptoms, medical staff in the island were ill-equipped to recognize the illness, which is endemic to the United States territory and difficult to diagnose.
By the time diagnostic tests were completed on at least 15 of these patients, they had been hospitalized for days without knowing what was making them sick or had returned to the hospital for the second and third time as their condition deteriorated, and the findings were not enough to save their lives because the infection had affected the function of vital organs, an investigation by the Center for Investigative Journalism of Puerto Rico (CPI for its initials in Spanish) has found.
The relatives’ accounts of what took place before their loved ones died suggest that the basic level of medical response or a standard protocol were deficient in the health care community after the storm and months later into 2018. As a result, treatment was delayed and this led many patients into life-threatening situations and even death.
Every year, it is estimated that more than 1 million cases of leptospirosis occur worldwide, including 59,000 deaths, according to the Center for Disease Control and Prevention (CDC). In the United States, about 150 cases of leptospirosis are identified annually and about 50 percent of those cases occur in Puerto Rico.
But the island has a history of passive surveillance, under-reporting and lack of testing—all essential tools to help prevent deaths.
The absence of active surveillance and good diagnostic tests is problematic because medical research shows that infected animals who carry the bacteria “may continue to excrete it into the environment continuously and sporadically for several years,” according to an article published by the Journal of the American Veterinary Medical Association.
Experts and clinicians working in the island said the number of people killed by leptospirosis after the storm is more likely to be higher than the government data shows because many of those who fell ill were never tested after the hurricane disrupted laboratories’ capabilities to test samples.
Carmen Deseda, an epidemiologist at Puerto Rico’s Department of Health (DOH,) said before the hurricane, the island lacked the lab capability to perform sophisticated diagnostic tests such as the CDC’s research lab has been able to provide since then.
Because leptospirosis deaths are commonly underestimated, it’s difficult to have an accurate picture of what happened in Puerto Rico said Dr. Albert Icksang Ko, a professor and chair of the Department of Epidemiology of Microbial Diseases at Yale School of Public Health.
“I would suspect that there were deaths that occurred that people didn’t suspect leptospirosis,” Ko said, noting that an epidemiological study would need to be conducted to reach a definite conclusion.
As for the relatives who share their stories with the CPI, most of them were not familiar with the disease until it affected someone they loved.
These relatives blame medical staff’s inability to understand the bacteria and wondered why hospitals don’t have strong protocols to test people seeking medical treatment for symptoms commonly known to the disease to ensure they were given antibiotics, which can be lifesaving during early stages of the infection. And they also hold Governor Ricardo Rosselló’s health officials accountable because after such a catastrophic natural disaster the government is ultimately responsible to protect the public’s health and well-being.
“I’m very upset with the government,” said Sonia Noemí Fernández González, whose brother Ángel Luis died on February 9, 2018.
The 65-year-old Ángel Luis Fernández González of Comerío went to a Cayey hospital twice seeking medical attention after he fell ill. His cousin got sick first and begged Fernández González to take care of his farm animals.
“They were denying [outbreak of leptospirosis and deaths from the hurricane], hiding it and they didn’t do anything, and we were the ones who suffered this tragedy because of the government,” she said.
Deseda said the agency established an active surveillance system after the hurricane.
“Puerto Rico has always had leptospirosis and we want to know what are our real numbers before and after the hurricane,” Deseda said, in a tacit recognition that the agency doesn’t have a clear picture of the impact of leptospirosis. “To have a better perspective of what are the tendencies of leptospirosis in Puerto Rico, and take measures to prevent it.”
For Christian Ely Romero Ramos, these efforts didn’t materialize soon enough to prevent the death of his brother, Romsy Ramel Romero Ramos.
“We were not prepared and as I’ve learned about leptospirosis, and how it can be treated with antibiotics…,” he said. “What I understand is that the Department of Health didn’t have a public preventive policy that could have saved lives.”
The 29-year-old baseball player sought medical treatment for his illness several times and was never tested for the bacteria. He passed away on October 5, 2017 after he was rushed on an ambulance to a hospital in Carolina.
“He was a passionate man, full of life and we were not expecting him to die,” Romero Ramos said noting that he left a young daughter behind.
When asked during a short phone interview to respond to the victim’s relatives, Deseda wouldn’t answer the question.
“It’s important for the people with relatives who apparently died of leptospirosis to inquire and investigate that it was leptospirosis and not another disease so they can find out what the risks were so it won’t happen again,” Deseda said.
The Island History of Under-Reporting
Leptospirosis was put back on the nationally notifiable disease list in 2013 after it was taken out in 1995, according to the CDC. In Puerto Rico, health care providers including laboratories must report cases, suspected or confirmed, to government health officials by phone or electronically as soon as possible and within five business days at the latest.
In 2010, the CDC’s Dengue branch described the surveillance of leptospirosis in Puerto Rico in an article as “passive” and “laboratory confirmation is rare” after it identified 25 leptospirosis deaths among 126 suspected dengue deaths and dozens of suspected dengue cases that tested positive for leptospirosis.
That same article noted that “60 to 90 percent of fatal leptospirosis cases were not reported, reflecting under-recognition of cases, under-reporting, or both.”
Puerto Rico’s mortality database listed leptospirosis as the prime cause of death for 18 people after the hurricane, in 2017. But the DOH said the agency is officially counting 14 people —nine confirmed and five classified as probable— because the other four allegedly were not officially confirmed with diagnostic tests. The DOH didn’t provide the data for 2018 after repeated requests.
Another study released in 2015 focused on patients treated at Manatí Medical Center Hospital concluded that a “better understanding of clinical symptoms of leptospirosis should lead to an early detection and physicians in P.R. need to be suspicious of the bacterial illness and consider the possibility of dengue co-infection.”
After the hurricane, Deseda told the press that the DOH was investigating the leptospirosis cases listed on the death records. But there’s no indication that the DOH contacted relatives as active surveillance efforts required, according to relatives interviewed by the CPI.
Carmen Camacho’s husband had been dead for 15 months when she received a copy of her husband’s test results on the mail at her home in Orocovis. Víctor Noel Pérez Roche, 63, had spent weeks ill including 18 days in intensive care at a hospital in Ponce before he passed away on October 25, 2017. The diagnostic tests from the CDC showed positive for leptospirosis, documents show.
Camacho said no government agency contacted her after her husband of 34 years died.
“Not even the town’s mayor came to see me. Nobody from the government,” she said, noting that the Federal Emergency Management Agency (FEMA) provided her financial support for the funeral expenses, which is part of the FEMA’s Individual Assistance program.
Clinicians and experts said leptospirosis tends to manifest as a mild disease from which most patients recover without any problems, but in one in 10 people the bacteria take severe forms of life-threatening complications that could contribute to someone’s death.
The expected clinical characteristics include the following: septic shock, a potential fatal condition that occurs when significant drop in blood pressure affects the function of internal organs as a result of an infection; acute renal failure or kidney failure, which is a treatable condition under normal circumstances and the most severe form of Weil’s syndrome; and acute respiratory distress syndrome, a life-threatening condition that prevents oxygen from getting into the lungs and blood.
A review of Puerto Rico’s mortality database documenting the deaths from September of 2017 to June of 2018 shows 507 people died of septic shock; seven cases of a combination of acute renal failure, septic shock, cardiac arrest and respiratory failure; and over 100 cases listed cause of death as septic shock and a bacterial infection.
Clinicians explained that many other complications and illnesses could have caused these deaths, but leptospirosis can’t be eliminated if no testing was conducted to rule out the disease.
Dr. Johnny Rullán is a former secretary of health who spent 30 years at the DOH.
“Nobody in Puerto Rico [government] wanted to admit that there was a problem,” Rullán said. “And that was the tragedy because there was no investigation on something so important and especially when leptospirosis is endemic to Puerto Rico.”
CDC Team Arrives in Puerto Rico
Eleven days after the hurricane, the DOH requested the CDC to assist with testing.
The request included help on building surveillance capability, and diagnostic testing for influenza, rabies, leptospirosis, salmonellosis and tuberculosis and implement a temporary transport system for shipping samples from Puerto Rico to the continental U.S. for surveillance, diagnostic and confirmatory testing.
The CDC laboratory team didn’t arrive until October 12, 2017, almost a month after the landfall.
By this time, Carmen Muñoz Muñoz of Rincón and at least six other people had died after contracting the bacteria.
Iris Eneida Muñoz of Tampa traveled to Puerto Rico the day before Hurricane María entered the island to be with her parents.
Her mother, 76, was diabetic but otherwise healthy. Her father was bed-ridden. A week after the hurricane, she took her mother Carmen to a local clinic after she complained of stomach pain and a rash. At the clinic, medical staff gave her three pills to take daily for three days and sent her home.
Carmen’s condition didn’t improve. She lost her appetite, felt nauseated and her skin was turning yellow. What Muñoz didn’t know is that her mother’s case was delicate and she had Weil syndrome, a severe form of the bacteria infection caused by leptospira.
“I took her to the hospital three times,” Muñoz said. “This was negligence because when I took her to the clinic in Rincón, they told us that the only medication available was for emergency cases.”
The daughter was able to get an ambulance to transport her mother to the Mayagüez Medical Center. She never saw her alive again. She died the next day on October 8, 2017.
“They [hospitals] were not prepared at all. There wasn’t even a laboratory available. They never did anything,” she said.
Muñoz didn’t know what caused her mother’s death until she saw the death certificate.
“When I heard the word leptospirosis, I was like what’s that?”
Muñoz had gone to Puerto Rico thinking that she was going to bury her father, José Rodríguez, 79, who was very ill at the time. Instead, she lost her mother to a disease she had never heard about.
Thirty-four days after the hurricane, Deseda, DOH’s epidemiologist, told the press that 76 cases of suspected and confirmed leptospirosis had occurred within a month after María including a handful of deaths.
At least 10 deaths had occurred by the time Deseda gave information to the press on October 24, 2017, according to data and interviews conducted by the CPI.
Four months later (February 2, 2018), Puerto Rico’s Secretary of Health Rafael Rodríguez held a press conference in which he announced that leptospirosis was under control.
The day after the press conference, Karoline Vázquez Díaz of Morovis landed at the emergency room in Manatí complaining of abdominal pain, nausea, headache and fever.
Medical staff there told the college student that she had a urinary tract infection and had probably contracted dengue too. They prescribed antibiotics and sent her home.
Vázquez Díaz, 21, felt better for a couple of days. Her mother, Brenda Díaz, took her to their family physician in Dorado on February 12, 2018. There, the physician ordered several diagnostic tests, including a test that detects antibodies the body develops to fight leptospira.
Days later, Vázquez Díaz went back to the emergency room at Doctors’ Center Hospital in Manatí, complaining of pain around her waist and weakness. She couldn’t walk straight. The lab results the family doctor ordered at a local lab came back positive for leptospirosis. The hospital did not take the lab results at face value and did its own testing.
Vázquez Díaz, who is an only daughter, admits that she was terrified.
“The night I came from the hospital I was praying and thanking God for taking care of me,” she said, sobbing.
Months after her daughter endured so much pain, Brenda Díaz wondered why a standard protocol to test for common diseases after such a catastrophe was amiss on the island’s healthcare community and why government health officials haven’t done more to change this.
“Why not do the test?” she questioned, noting that while at the emergency room other people showed up and were suspected of having the bacteria too. “Let’s go through an elimination process and do the leptospirosis, influenza and zika tests.… This could have prevented many deaths.”
A Deceitful Illness, Not Good Diagnostics
Leptospira is a tricky bacterial disease that masquerades as other diseases like dengue fever, Chikungunya or influenza, and there’s nothing during a routine exam that would detect the bacteria so laboratory tests are the only alternative, medical experts said.
There are several diagnostic tests available that look for leptospira or antibodies the body creates against it. But the accuracy of the diagnostic tests hinges on at what stage of the disease the test is performed and none of these test is completely accurate.
Joseph Vinetz, an expert on leptospirosis and a professor of medicine at the School of Medicine at Yale University, said because leptospirosis is rare in the U.S., there’s no commercial interest in creating accurate diagnostics.
Vinetz noted the failure among clinicians to diagnose the bacterial disease is an issue within the health care system. But “when the health care falls apart, that’s a government issue and that’s what happened after the hurricane,” he said.
Lemuel Martínez Bonilla, a physician and infectious disease specialist at the Doctors’ Center Hospital in Manatí, said no diagnostic test is superior to another.
“Each test has its role, its strengths and weaknesses,” Martínez Bonilla said. “If you can’t understand this alone, you can’t interpret results.”
The CDC’s Bacterial Pathogens Branch has provided the DOH $5 million in funds for 2018-2020 and is assisting to repair, upgrade the lab, install new equipment that can be used for leptospirosis testing, including polymerase chain reaction (PCR) and a screening serology (immunDOT) test, said Christine Pearson, a spokesperson for the CDC.
The CPI requested information on how this funding has been allocated including partners, personnel hired and their roles and information indicating how all these efforts are expected to improve surveillance on leptospirosis. The DOH and the CDC ignored the request.
Since the hurricane, CDC laboratory staff has been testing samples on suspected leptospirosis cases for the DOH, which can take a few weeks, and has cost the CDC about $35,000 quarterly, Pearson said. This test included the microscopic agglutination test (MAT), a time-consuming and complicated test, which detects antibodies to leptospirosis.
The CDC is one of a few public health labs that can do MAT testing, considered to be the gold standard for serology. But according to research, the test has several limitations including “the false-negative results obtained early in the course of the disease.”
PCR, the test the CDC is training DOH staff to perform and providing equipment for, enables rapid and direct diagnosis from the actual leptospira DNA in blood, urine or spinal fluid. This test, however, has shown itself to be sensitive and specific and works better in the early stages of the infection. A negative PCR test does not rule out leptospirosis, according to the CDC.
Members of the medical community, including Rullán, have criticized the island health officials’ decision to continue shipping specimens to test to the CDC’s headquarters in Atlanta, now that electricity has been restored, because it can take weeks to get results.
They said it is not realistic for clinicians to wait for days to get test results when the lives of their patients are at risk and especially when red tape has hampered the ability of doctors to get results directly from the CDC because they must wait for DOH to release the results.
Those who are on the frontlines of this issue say they need better diagnostics tools, technology and education to combat the bacterial disease at a time when global warming is expected to cause extreme weather every year.
“The hurricane opened my eyes. We physicians are completely alone,” said a private physician who asked to remain anonymous. “The Department of Health reacts, it doesn’t prevent.”
David A. Haake, a physician and infectious disease specialist who teaches at UCLA, said Puerto Rico needs to implement a strategy developed by a multi-disciplinary team composed of microbiologists, veterinarians, physicians, infectious disease specialists, the media and nurses, to mention a few, to raise awareness, educate clinicians and the public. Haake is also a member of the International Leptospirosis Society.
“The goal is that a patient comes into the doctor and there’s a level of awareness among physicians to make the diagnosis, because it’s really a clinical diagnosis,” Haake said. “And it’s not going to happen, if they are not thinking about it.”
Rullán said health officials must be proactive and investigate cases to find out the source and understand how the bacteria has affected people in Puerto Rico after the hurricane and there after.
“If there’s no surveillance, there’s no data and no outbreak and if there’s no outbreak, there’s nothing to investigate so why are we going to investigate something that doesn’t exist? That’s what the government is going to tell you,” Rullán said, as he described government health officials’ attitude towards the disease. “We need to educate, but we can’t allow those who are supposed to be protecting us to get away with doing nothing and continue this silent conspiracy.”
This investigation was produced as a project for the Dennis A. Hunt Fund for Health Journalism, a program of the USC Annenberg Center for Health Journalism, and also made possible by the Society of Environmental Journalists’ Lizzie Grossman freelance grant for environmental health reporting.