Watchdog Forever

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After proving their worth in the aftermath of Hurricane María, thanks to philanthropic support, health centers are now being considered in the government’s disaster recovery plan for funding.

By Mc Nelly Torres | Centro de Periodismo Investigativo

Three days after Hurricane María, Isolina Miranda stared in disbelief at what was left of the two-story building where a community health center once stood in the heart of San Lorenzo, a town of 37,000 people in the eastern central region of the island.

Miranda is the executive director of COSSMA Inc., one of 20 community health centers in Puerto Rico.

María made landfall on Sept. 20, 2017. The hurricane’s powerful winds ripped off the health center’s sheet-metal roof and the rain damaged everything inside — medications, furniture, computers, medical equipment and a newly renovated obstetrics area.  

When she arrived at the now-ruined center, she found patients and staff anxiously waiting. The patients worried about the clinic’s ability to provide medical services after the building was gutted; the staff were concerned about losing their jobs.

“People were crying,” Miranda said as she herself tried to control her emotions, but her eyes got watery nonetheless. “I told them not to worry… ‘Let’s see what we can do with what we have.’”

Miranda had seen the damage the hurricane had left behind on her drive to the clinic and suspected the need for health care services would be essential in the aftermath. She instructed the staff to set up a tent on the sidewalk and start documenting patients’ names and the medications needed as they arranged transportation for patients to other COSSMA clinics with still-viable pharmacies in nearby towns.

Health centers like COSSMA provide primary health care for impoverished populations in the island. But during the first days and weeks after María, these centers became the first responders for everyone who needed medical assistance and medications in their communities. The response by most of these health centers helped at a time in which a public health crisis unfolded and many hospitals were closed after the storm while federal and state government agencies — tasked to step in after a natural disaster — were not present to help bear the load, according to interviews with several people.

“We couldn’t communicate with anybody,” Miranda said describing the first few days after the storm. “We took our medical services to the communities.”

In many cases, health care providers such as COSSMA worked in tents set up outside the health center because the buildings were partly damaged or not safe, while others like Centros de Servicios Primarios de Salud de Patillas used their mobile units to visit patients at home, including some who lived in remote areas. The Corporación de Salud Asegurada Por Nuestra Organización Solidaria (SANOS) visited emergency shelters and elderly-care facilities in Caguas to provide primary care and medications for patients with chronic diseases, such as diabetes, hypertension, asthma and heart disease. The one in Patillas stayed open to the public even as the storm entered the island a few miles away.

These centers were also among the first to receive patients with conditions closely associated with catastrophic public health events such as acute infections, conjunctivitis, scabies, asthma, dermatitis and contagious diseases including influenza, dengue, leptospirosis and Zika.  

“We were alone in the world,” said César Montijo, chief executive officer of SANOS, a health center in Caguas, when describing how his clinic stepped in to provide medical services and even food to communities in need 72 hours after the hurricane hit.

The health center’s unrelenting efforts at the time of the hurricane, showed that they are an effective part of the island’s emergency response strategy. Last year, the Health Resources and Services Administration (HRSA), the federal agency that provides funding for health centers, awarded $12.8 million to support preparedness, especially in remote areas. Direct Relief, a California-based organization that supports the immediate needs of victims of natural disasters, contributed funds to install solar panels in 37 clinics, and supplied pre-packaged modules with emergency medical supplies in advance of the 2019 hurricane season to 12 health centers. Other preparedness efforts have included: adding higher-capacity generators, installing fuel tanks large enough to store diesel for 21 days or more, building water storing systems and wells.

“We couldn’t communicate with anybody,” Miranda said describing the first few days after the storm. “We took our medical services to the communities.”

Last year, the government of Puerto Rico asked the U.S. Congress to approve $250 million in funds that would prepare community health centers’ response after a disaster and over a long term by supporting elements such as all-terrain vehicles and mobile care clinics that would be ready to respond in places with sustained damages and isolated areas after a disaster.

This was part of the government’s economic and disaster recovery plan. CPI asked the Department of Health of Puerto Rico to provide details on whether the funds were approved and a list of centers involved in these efforts and any emergency preparedness plan that includes health centers. But DOH forwarded the request to the Central Recovery and Reconstruction Office of Puerto Rico (COR3), and that office didn’t provide the information after repeated requests.

Medication and health care access vital after a disaster

Access to medications and medical services can quickly become a matter of life or death after a natural disaster, and this became apparent after the massive storm disrupted infrastructure — electricity, transportation, and communications — causing delays in access to health care, food, and water.   

In Puerto Rico after María, those delays contributed to approximately 3,000 “excess deaths” between Sept. 20, 2017, and Dec. 31, 2017, according to the latest estimate by Harvard University.

The survey concluded that some of the reasons for the increased number of deaths after the storm included the inability to access medications, absent physicians and disruption to medical services, the need for respiratory equipment requiring electricity and the inability to reach 911, especially in remote areas.

Montijo said health centers focus on primary care became important at the time and it allowed hospitals to concentrate on more serious cases.

“We are talking about having medications that needed refrigeration, or providing therapy to asthmatic patients because they didn’t have any power at home,” Montijo said. “Those basic things are important and could be life-saving measures too.”

Arturo García, a physician and medical director at the health center in Patillas, said the clinic had many patients seeking comfort the night of the storm.  

“We had a lot of people who came here to receive their respiratory therapy because they didn’t have any electricity,” García said, noting that they had prepared for that because the town has a growing elderly population. “People died here in Patillas because they didn’t have any electricity.”

Fifteen days after the storm, the 20 health centers and their clinics around the island were not mentioned on the daily fact sheet about the emergency works produced by the Federal Emergency Management Agency (FEMA).

The daily memos documented recovery efforts taking place every day by state health agencies and the U.S. Department of Health and Human Services, listing the number of hospitals, Centers for Diagnostics and Treatment (CDT) and urgent care clinics, according to a review of over a thousand pages of FEMA memos obtained by the Center for Investigative Journalism (CPI in Spanish), the result of a lawsuit filed against the federal government to obtain documents.

The daily memos did not include specific details about the health centers immediate needs such as electricity, water, medication and manpower or any efforts underway to provide relief. As far as FEMA’s documented memos, the community health centers and their role in providing primary health care to vulnerable communities did not exist.

“The government had multiple priorities, and at some point, the government, the Department of Health and FEMA decided to concentrate efforts on the hospitals,” said Alicia Suárez, executive director of the Association of Primary Health of Puerto Rico (ASPPR), noting that there was confusion about the community health centers. ASPPR is a support organization for the health centers in Puerto Rico.

In an email response to CPI request for comment, FEMA said it “supported the priorities established by the government of Puerto Rico and the Department of Health to determine the assistance to be provided to health care providers.”

“The P.R. Department of Health did not assign a response role to the 330s (health centers) in the relief operation,” Juan A. Rosado Reynes, a FEMA spokesperson wrote. “Therefore, any assistance provided to survivors was coordinated under their own initiative.”

Weeks after the event ASPPR began to impart a simple message to the government and FEMA: primary health care facilities are also important, Suárez said.

Nobody could have predicted the magnitude of the storm nor the devastation it left behind, not even the health centers that prepared for the hurricane. The challenges extended to the people who work in them: 95 percent of the centers reported staff who lost their homes.

Four weeks after the storm, 89 percent of the health centers were providing limited hours of operations and services because of lack of staff, electricity, and equipment, which prevented them from providing services like laboratory services, x-rays and dental among other services, according to a November, 2017 report by the Milken Institute School of Public Health. Sixty-five percent of the health centers required building repairs.  

One of the federal mandates required health centers to continue their mission, regardless of the damages caused by the storm, to provide medications and primary health care services, without any restrictions, to those who needed the services after a natural disaster, Suárez said.

Serving underserved communities

Salsa music blasted from the large speakers during a warm afternoon at the rural neighborhood of San Antonio in Caguas. SANOS’s mobile unit was parked in front of the neighborhood’s recreation center and it came packed that day with a family physician, a pediatrician and a nurse to receive patients all day. Patients, mostly elderly, waited inside the building where it was cooler, away from the sun.    

SANOS provides primary health care services including pediatrics, vaccination, obstetrics, psychology, medication at a discount rate through a federal program and other services to about 7,000 patients annually.

“We respond to specific needs in the community,” Montijo said, noting that SANOS serves homeless, HIV and low-income patients whether they are part of the publicly-funded health program or not. “Every community has its own challenges and needs.”

The concept of community health centers emerged in the U.S. during the War on Poverty initiatives in the early 1960s, creating a model that targeted the roots of poverty by combining resources of local communities and federal funds to establish clinics in both rural and urban areas around America. Today, there are nearly 1,400 centers with more than 11,000 clinics in communities around the United States and its territories.

Known as 330s in Puerto Rico, because Section 330 of the Public Health Service Act is the federal statute that creates and authorizes the Health Center Program and its funding, these centers receive funds from the Health Resources and Services Administration (HRSA) program to provide primary care services in underserved areas. The health centers emerged in Puerto Rico in the 1980s.

In Puerto Rico, the 20 health centers have a total of 79 clinics, 10 mobile units and six programs in public schools in 59 municipalities, according to ASPPR. The health centers are all independent non-profit organizations, mostly federally-funded, owned by the communities they serve. A board of directors composed of its own patients governs each center and its clinics.

In 2017, the health centers provided comprehensive primary health care to more than 370,000 children and adults throughout the island. Most patients seeking their services receive Medicaid, but the centers’ clinics also provide care to people with private insurance, Medicare and people without insurance.  

After the hurricane, three-quarters of the centers experienced a jump in the number of patients, according to a November, 2017 report by the Milken Institute School of Public Health.

“It became apparent there was a great need [for services] after the hurricane, especially from special populations,” said Rubén Rodríguez Bou, a family physician with SANOS who has been practicing medicine since 2004. “The lack of access to health care is a problem among the elderly population and this became prevalent after the storm.”

A week after the storm, Luis R. Rodríguez, a retired interior designer, walked to the San Lorenzo clinic and penciled his name on a notepad to get a ride to the COSSMA clinic in Las Piedras and get his diabetes medication. He had run out of medication after the hurricane and was lucky that his neighbor takes the same pills to control her type 2 diabetes. She shared some with him to tide him over.

“The bus was loaded with people,” he said.

Félix Ramírez, 65, who suffers from a heart condition, diabetes and needs oxygen to breathe, has been a long-time patient at COSSMA. When María hit, Ramírez was at Hospital Menonita in Caguas due to ongoing complications from a surgery he had in 2014. His wife Iris Vázquez, 58 and her 8-year-old grandson weathered the storm at a relative’s home in Caguas because they feared their wooden home in Barrio Hato wouldn’t be strong enough to survive the hurricane’s winds. It wasn’t.

Two days after the hurricane the hospital called Vázquez and told her that they were releasing her husband. Hospital staff had moved patients to the hallways as the hurricane destroyed the glass windows on several top floors and water rushed into the rooms.

Ramírez was on the sixth floor.  

“Patients who were in delicate condition were sent home because the hospital was in no condition to keep them,” Vázquez said, adding that hospital staff was worried about bacteria infecting patients. “He has blood clots in his legs and emphysema, so patients like him were at risk.”

It didn’t take long for COSSMA’s medical team, including Ramírez’ own physician, nurse and a counselor, to show up at the house to check on his health. They also delivered medications on several occasions to her husband, but also insulin for her, Vázquez said during a phone interview.

Vásquez, who criticized the local and state governments’ slow response, said the clinics were lifesavers and they helped many even when they were operating from under an improvised small tent.

“The number of deaths would have been higher because many patients had chronic conditions and they needed medication,” she said about COSSMA’s work after the hurricane. “And my husband would have been on that list [of the dead] too.”

Today, the COSSMA clinic in San Lorenzo is operating from three rented portables across the street from where the old building used to stand. COSSMA also has clinics in Yabucoa, Humacao, Las Piedras, Aibonito and Cidra, serving a total of 30,000 patients with 300 employees.

“We see it every day when we visit patients at home,” said Yanira Rodríguez, a social worker for COSSMA. “It’s sad that after the hurricane we’ve seen that the needs have changed and even those who were taking care of an aging parent can’t do it anymore because of physical or emotional issues.”

Miranda rotates the staff between the clinics in San Lorenzo to Las Piedras and Humacao because they don’t have the space needed at the three portables to provide all the services the health center provided before the hurricane. Plans to start construction of a new clinic are underway.

Yanira Rodríguez, a social worker for COSSMA who is based in San Lorenzo, said mental health issues have been a growing concern as they’ve seen more patients who lost their homes and livelihoods suffering from stress-related conditions, anxiety, substance abuse and depression.

The most recent survey on the community health centers by the Henry J. Kaiser Family Foundation published in September 2018 validates Rodríguez experience. The health centers reported a “substantial uptick in patients suffering from depression and anxiety, including post-traumatic stress disorder (PTSD), and said their patients are more likely to experience suicidal thoughts and attempts than before the storm,” says the report.

Puerto Rico’s population is getting older and sicker suffering from chronic conditions — sometimes, with nobody to care for them — and there are also younger people with special needs. These vulnerable groups increasingly depend on public-funded programs at a time when deep divisions in the U.S. Congress and the Trump administration have delayed granting Gov. Ricardo Rosselló’s request for $600 million in emergency funds for the island’s food assistance program, which helps to feed 1.3 million families. Those funds are part of a package disaster bill approved this week that was signed by the president on June 6.

“We see it every day when we visit patients at home,” Rodríguez said. “It’s sad that after the hurricane we’ve seen that the needs have changed and even those who were taking care of an aging parent can’t do it anymore because of physical or emotional issues.”

Solidarity from U.S. health centers showed its face

As soon as the hurricane landed in Puerto Rico causing massive destruction, members of the National Association of Community Health Centers quickly organized to help health centers on the island. They partnered with the Hispanic Federation, Direct Relief and other community organizations to deliver help to health centers.

As communication gradually improved, reports from ASPPR began to arrive showing an urgent need for vaccines and drugs including antibiotics, eye drops, insulin, anti-inflammatory drugs, gastrointestinal drugs and respiratory therapy.

ASPPR set up a reporting system using WhatsApp to collect weekly data, sending updates on the health centers immediate needs to inform the Health Resources and Services Administration and other organizations ready to deploy help and support. The association used the same app to communicate with the health centers, but also visited many of the sites as conditions improved. ASPPR’s weekly reports helped other groups prioritize as well.

“If we couldn’t communicate, we would just drive to the location to evaluate the situation and that began the Monday after the storm,” said Darielys Cordero of ASPPR.

Each natural disaster brings its own unique challenges and lessons. Hurricane Katrina taught emergency workers that the response needs to be regional because people will always seek help at the local hospitals and health centers.

In Puerto Rico, people reacted in different ways depending on the individual situation, but health care providers at the health centers realized quickly that they needed to take health services to those who were unable to travel to the clinics. Some patients were too sick to travel, didn’t have transportation while others didn’t want to leave their damaged homes for fear to be robbed.

Feygele Jacobs, president and CEO of RCHN Community Health Foundation based in the Bronx, New York said private philanthropy was able to help with funding, medical equipment, manpower, medications and other necessities like toiletries.  

“But what does it say when you are relying on private philanthropy [instead of the government]. Right?” Jacobs said.

Andrew MacCalla, emergency response director for Direct Relief, said the organization works closely with health centers in the U.S., including those in Puerto Rico. The organization landed seven days after the storm hauling $70 million worth of medications, half of which was donated to the health centers.

“We know that after disasters they (health centers) basically become first responders in their communities,” MacCalla said.

Challenges exposed in the community health centers

Regardless of the work, many health centers are struggling to recover from damages as they continue to provide primary health care to a growing poor and elderly populations. In 2016, 86 percent of the health centers patients on the island had below-poverty level income, compared to 70 percent of patients served by similar centers in the 50 states and D.C.

The hurricane might have exacerbated economic circumstances for many Puerto Ricans, including children and the elderly. According to a Washington Post-Kaiser Family Foundation survey of the island’s residents published in the fall of 2018, 29 percent of people surveyed earning $20,000 or more said they had lost income from a small business or missed days at work. Further, Puerto Rico presents the worst economic conditions for children in the U.S., including having the highest rate of children (56 percent) living below the poverty line and 84 percent living in high-poverty areas, according to the 2018 Kids Count Data Book released in 2018 by the Annie E. Casey Foundation.

Puerto Rico’s funding crisis and the island’s $70 billion debt have contributed to the decades-long migration of healthcare professionals. Hurricane María just made it worse.  

At the island’s health centers, 90 percent of respondents said they had difficulties hiring physicians; 88 percent pharmacy staff; 67 percent substance abuse staff, and eight percent of the health centers indicated it was not possible to hire mental health and substance abuse staff at all, according to a survey of health centers published on April 2018 by the Milken Institute School of Public Health at George Washington University. More than half (57%) said it was difficult to retain staff, the survey shows.

Medicaid funding’s uncertain future

Puerto Rico’s healthcare system has been under financial stress for decades and Medicaid funding, which the island receives in the form of a block grant, was barely hanging by a thread before Hurricane María wrecked the island.

As part of the recovery efforts after the hurricane, the U.S. Senate approved $4.8 billion in Medicaid funds in early 2018, but this funding will run out in September of 2019.

This means that after September, the island would be facing a Medicaid funding shortfall and if Congress doesn’t act before, and that could leave 1.4 million people without health care, including most of the patients at the health centers.  

Jacobs, who has collaborated with others to publish surveys about health centers in Puerto Rico, said the hurricane highlighted the health care funding disparities in Puerto Rico.

She noted that these centers are “doing extraordinary work, despite not having the ‘adequate’ funding.” She was in the island for the Three Kings Day holiday in 2018 visiting a health center in Loíza that was operating with a generator. “This bears some discussion because they are so at a disadvantage from the [U.S.] national point of view. They’ve been under-invested for decades.”

This article was produced as a project for the Dennis A. Hunt Fund for Health Journalism, a program of the USC Annenberg Center for Health Journalism.

This story was originally published on June 13, 2019 in English and Spanish by the Center for Investigative Journalism of Puerto Rico and its media partners.

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Leptospirosis is no stranger to Puerto Rico and research by the Center for Disease Control and Prevention has shown that before people got sick after Hurricane Maria, health officials’ passive surveillance hampered the ability to detect and prevent getting infected with this bacteria.

By Mc Nelly Torres | Centro de Periodismo Investigativo

Jhon Alberto Hernández Núñez fell ill about a week after Hurricane María devastated the island of Puerto Rico on Sept. 20, 2017.

A 34-year-old electrician, he sought medical attention to alleviate symptoms of 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 bodily carry Hernández, who was six-feet, four-inches tall, and drive him to Manatí Medical Center.

Hernández died there on Oct. 4. He left two children ages, 10 and 7.

On Dec. 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,” said his daughter Lisandra Merced Ortiz.

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 – eyes, nose, 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. 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 DOH, said before the hurricane Puerto Rico 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 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 Gov. 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 Angel Luis died on Feb. 9, 2018.

Ángel Luis Fernández González, 65, of Comerío, went to a hospital in Cayey 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.

“Nobody in Puerto Rico [government] wanted to admit that there was a problem,” said Dr. Johnny Rullán is a former secretary of health who spent 30 years at the island’s Department of Health. “And that was the tragedy because there was no investigation on something so important and especially when leptospirosis is endemic to Puerto Rico.”

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 Oct. 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 victims’ 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 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. 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 DOH was investigating the leptospirosis cases listed on the death records. But there’s no indication that DOH contacted relatives as active surveillance efforts required, according to relatives interviewed by 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 Oct. 25, 2017. The diagnostic tests from the CDC showed positive for leptospirosis, documents show.   

“Not even the town’s mayor came to see me. Nobody from the government,” Carmen Camacho, now a widow, said.

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: 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 island’s Department of Health.

“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 Department of Health of Puerto Rico requested the Center for Disease Control and Prevention to assist with testing.

DOH request for assistance to the CDC 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 P.R. to the continental U.S. for surveillance, diagnostic and confirmatory testing.

The CDC laboratory team didn’t arrive until Oct. 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 Oct. 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 Oct. 24, 2017, according to data and interviews conducted by CPI.

Four months later (Feb. 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 Feb. 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 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 island’s Department of Health $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 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.”

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 leptopirosis. DOH and CDC ignored the request.

Since the hurricane, CDC laboratory staff has been testing samples on suspected leptospirosis cases for 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, Ga., 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 is 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.

This story was originally published on June 6, 2019 by the Center for Investigative Journalism of Puerto Rico (CPI in Spanish) and its media partners.

It was an honor to be inducted into the National Association of Hispanic Journalists Hall of Fame. I began writing my speech that week and then got busy and didn’t finish it until hours before the event.