As Tropical Storm Ernesto threatened to cause yet another blackout across Puerto Rico, LUMA, the private company managing the energy system, urged patients reliant on electrical devices to register on a list. “At the moment, we have 3,000 people registered with life-preserving equipment, and that’s far too few,” said Juan Saca, the company’s president, at a press conference on August 12. He claimed that LUMA would prioritize restoring power for these individuals. While he avoided confirming whether the government had shared information about these vulnerable patients, he asserted that LUMA only had data from the list they were compiling during the emergency.

Seven years after Hurricane Maria, which caused nearly 3,000 deaths primarily due to the absence of electricity, Puerto Rico still lacks an integrated information system to identify who and where the people with special needs are — such as those who depend on electrical power — to rescue them before, during, and after disasters. The Department of Health (DS, in Spanish) has chosen to avoid the task of creating this list rather than trying to save lives by doing so.

“In time, we should have a single database. That must be the goal,” acknowledged Governor Pedro Pierluisi at the press conference hours before Tropical Storm Ernesto hit. The Centro de Periodismo Investigativo (CPI) had asked for his thoughts on LUMA’s call for vulnerable clients to register at 848-888-5862. Municipalities, the federal government, the DS, and nonprofit organizations have also made separate and uncoordinated efforts to create lists of people who rely on electrical equipment to live.

These patients cannot rely on LUMA for safety during a disaster, as their category “is not considered a restoration priority,” according to LUMA’s Emergency Response Plan. This plan contradicts the statements made by the company’s president, Juan Saca, and its spokesperson, Hugo Sorrentini, who separately claimed that electricity-dependent, at-risk individuals would be prioritized after the company addresses critical areas like transmission lines stabilizing the electric system and hospitals.

In Puerto Rico, despite the absence of a national registry, Act 152 of July 19, 1998, allows patients to receive energy consumption subsidies for life-preserving equipment. A LUMA report indicates that about 2,799 people are eligible for this subsidy. This number represents only 6% of the patients identified by the emPOWER Program, a federal government tool providing data on populations dependent on electrically powered medical equipment, and by the DS’s registry of infants, children, and adolescents.

The national database could have been created starting in 2021 if the Puerto Rico Senate had approved Senate Bill 281, which sought to create a registry of dialysis and special-needs patients to develop a plan ensuring their survival. However, Health Secretary Carlos Mellado stated during public hearings that this responsibility should fall on the municipalities.

The population dependent on electricity is not only vulnerable during natural disasters but constantly, given Puerto Rico’s fragile electric system, where power outages occur frequently even without a storm.

Alexis Torres, Secretary of the Department of Public Safety, also avoided having his agency create the list, arguing during public hearings that the task should fall to the municipalities and the DS. The disagreement within the Executive Branch was evident. Nelson Torres Yordán, then-executive director of the Mayors Association, representing leaders of the Popular Democratic Party (PPD), passed the responsibility back to Mellado: “This is an inherent responsibility of the Department of Health,” he stated. The Mayors Federation, which includes the heads of municipalities from the New Progressive Party (PNP), added that the registry should not be imposed on the municipalities. As the municipalities and the health and safety agencies avoided responsibility, the legislation stalled.

“This is a matter of power struggles and disagreements between state agencies and municipalities,” said Ralph Rivera, lead researcher at the Center for Public Health Preparedness at the Medical Sciences Campus of the University of Puerto Rico, in response to the bill’s failure. “If we had that registry, theoretically, we wouldn’t have to improvise after a disaster.”

The bipartisan measure, presented by Senators Gregorio Matías (PNP) and Gretchen Hau (PPD), sought to ensure the government would be ready, avoiding the situation where LUMA had to hastily compile a list of vulnerable patients 24 hours before Tropical Storm Ernesto’s arrival.

The behind-the-scenes decisions within the DS, which can mean life or death for these individuals, are now public as CPI accessed thousands of emails, reports, and other documents following a public information lawsuit filed in December 2023. These communications reveal a dangerous pattern of misinformation, negligence, and lack of continuity in the necessary initiatives to aid the most vulnerable. Additional documents on this issue were obtained through a Freedom of Information Act (FOIA) request to the federal government.

A Blackout Means Danger

Thin, slightly hunched, and 21 years old, Carlos Manuel Cruz smiles at his mother, nurse, and visitor. He can’t see or speak, but he feels. He drew an imaginary sun in the air with his right hand, then mimicked the sounds of a horse galloping and a frog croaking. Klinefelter syndrome, a genetic condition affecting only males, had stunted his body’s development. He suffers from blindness and struggles to understand what’s happening around him. During the first week of June, he was unaware that the electricity in his home in the Pasto neighborhood of Coamo had been cut off. An explosion at a transformer on the LUMA-managed grid caused a blackout in the towns of Coamo, Santa Isabel, and Aibonito. A week after Tropical Storm Ernesto, his neighborhood was still in darkness.

When the power goes out, Carlitos’ parents go on high alert. They must “rush to turn on a generator or find gasoline,” explained his mother, Lizzie Santiago. Carlitos suffers from epilepsy, which causes seizures and experiences low oxygen levels, necessitating therapy with an oxygen concentrator, a device that relies on electricity.

While the Puerto Rico government has yet to create a global registry of these patients, the federal government has made the emPOWER database available since 2013, identifying more than 44,000 electricity-dependent individuals in Puerto Rico. However, this list is limited: it only includes Medicare beneficiaries connected to ventilators, positioning beds, and dialysis machines, among other equipment.

During public hearings on the bill to create the registry of dialysis and special-needs patients, the Health Secretary said this information was already available through emPOWER. These statements were misleading.

Documents obtained through CPI’s lawsuit confirm that the DS has made very limited use of this data and has a pattern of errors with this tool. The Secretary did not tell legislators that his agency neglected to use emPOWER data during the worst natural disaster in the contemporary history of Puerto Rico, the back-to-back hurricanes Irma and María. Nor did he mention that, although the agency requested patient data from the federal government following the 2020 earthquakes, it did not share it with municipal first responders who needed information on who and where the electricity-dependent patients were. The problem repeated in 2022 after Hurricane Fiona, which caused a general blackout.

The emPOWER program publishes aggregated data (without identifying patients’ personal information) to enable the government to plan for preparedness and response. During an emergency, it provides personal information so state and municipal governments can identify, locate, and rescue these vulnerable individuals. Emails show that the Department of Health has had opportunities to train on how this tool works since before Hurricane María.

Former Health Secretary Rafael Rodríguez Mercado told Notiséis 360 in September 2019 that this information was not available during Hurricane María. Rodríguez Mercado said the U.S. Department of Health and Human Services (HHS) “did not allow territories and some states to use it. And because of what happened during María, they’re now allowing it.”

The federal agency firmly denied these statements. “That statement is incorrect,” an HHS spokesperson told CPI, asserting that patient-identifying data was indeed available.

Mellado and Shirley Esquilín, director of the Office of Public Health Preparedness and Coordination, declined CPI’s interview requests. The agency stated in writing that emPOWER only provides patient addresses dependent on electricity. However, HHS sent other statements refuting this claim: “identifiable data including names, addresses, and types of equipment used have been available to state and territory health officials since 2013 for lifesaving activities in responding to disasters including hurricanes.”

For the Health Department to share specific patient information with first responders, they must sign a federal information-sharing agreement and undergo HIPAA training, which protects patient privacy.

“I don’t understand Health’s reluctance to share data when they can’t do anything alone. If they’re hiding the data, then they’re not practicing public health,” Dr. Mariola Rivera, a pediatric pulmonologist who has been vocal on Twitter (X) about the importance of using this information to aid the people who depend on electrical power, told CPI.

“It’s not hard to do a HIPAA course. It takes one morning. Very easy. The Health Department needs to learn to delegate. Why create so many problems and obstacles when it could be so simple? It’s astounding that we’ve been arguing about something so simple for so many years,” Rivera added.

Nonprofits “Blind” During Emergencies

Two major nonprofits, the American Red Cross and the American Association of Retired Persons (AARP), went to La Fortaleza, the Governor’s executive office, on August 5, 2022, to recommend precisely what the government had rejected a year earlier: a list of patients with special needs.

Although a DS spokesperson told CPI that they were unaware of the Red Cross’s recommendation, Lee Feliciano, executive director of that disaster response organization, confirmed that they suggested the creation of the registry during the August 5 meeting at La Fortaleza, two years ago, in front of DS and the Puerto Rico Emergency Management Bureau

(NMEAD) officials. They called for a better disaster preparedness and response strategy. An email obtained reveals that attendees included Nivia Gerena, DS’s liaison for populations with functional and access needs, Abner Torres, NMEAD’s planning area director, and Ciení Rodríguez, Secretary of the Department of the Family, among others.

Feliciano said the registry “cannot be started during the disaster.” It must be constantly updated and fed by government, private, and nonprofit databases, which can be done in compliance with HIPAA, she said. “It should be a tool for us, nonprofits, and organizations like municipal emergency departments to help better prepare these families when a disaster is coming. Without the information, it’s very difficult to do so. Because we’re reacting after the disaster, not before,” she added.

The Red Cross, like the government, educates the public on the importance of everyone taking responsibility for themselves and their families. “This general education, which is what we see most , about family preparedness and how to pack an emergency kit, is good and necessary,” Lee Feliciano told CPI. “However, there are vulnerable populations that need education specifically designed for them, like the deaf community and bedridden individuals. And caregivers, who get exhausted. We need to see how we can help those caregivers be better prepared for a disaster,” she said. “There were deaf people who found out late that Hurricane María was coming and how powerful it was.”

José Acarón, director of AARP in Puerto Rico, expressed his frustration when CPI asked about the lists. His organization had partnered with the DS in 2015, two years before Hurricane María, to collaborate in creating the Registry of Populations with Functional and Access Needs. Patients registered voluntarily by calling the 3-1-1 Government Services Line. The late Dominican-Puerto Rican artist Sandra Zaiter, who suffered from leg paralysis, was the public face of that campaign. In 2016, with the change of government administration, the DS abandoned the initiative, Acarón said.

“The only way to address this is with top-down will, from the Puerto Rican government, the federal government, to the municipalities. And nonprofits must execute the plan. But they’re in the dark,” Acarón warned.

The DS told CPI that it does not manage this registry, as it belongs to the 3-1-1 Government Services Line, under the Department of State. “We have been informed that the registry has been inactive for about seven years. It is important to note that this registry did not replace individual responsibility and preparedness. Each resident should develop their own emergency plan for their safety and that of their family in case of an emergency,” said the Health Department spokesperson.

The DS stated that it manages the Registry of Technology-Dependent Children and Youth, created after Hurricanes Irma and María in 2017. The registry collects data on 299 minors.

In his testimony for Senate Bill 281, Mellado argued that his agency could not update the data of the 3-1-1 Government Services Line because the DS lacked the human resources. The alleged need for staff contrasts with a pattern of using public funds to hire professional services from technology companies within the agency, with possibly inflated charges and services duplication, which have done little to improve performance or data availability at the DS, according to a CPI investigation.

In its written responses to CPI, the DS stated that it has developed a more user-friendly visualization of emPower data by municipality and zone, without identifying patients, in addition to a general summary of aggregated data from that platform that is updated monthly for municipalities.

Six days after CPI sent questions to the DS, on August 7, 2024, the Health Secretary issued an order requiring health insurers to report monthly on how many patients connected to medical equipment are covered. However, this administrative order does not require health insurers to provide the Health Department with patients’ names, addresses, and health conditions during an emergency so they can be identified and assisted before and during disasters.

A Global Registry Works in Other Countries

One night in December 2015, in the Province of Buenos Aires, Mauro Stefanizzi was awakened by guttural noises. He went to the room of Joaquín, his one-year-old son who had chronic lung conditions and realized that the oxygen concentrator wasn’t working. A blackout had occurred. Stefanizzi became aware that power outages could kill his son, he told CPI. Additionally, the cost of electricity had risen, making it difficult for Stefanizzi to pay. He began to engage in activism and appeared in the media, joined by other families, leading to the formation of the Argentine Association of Electrically Dependent Individuals (AADED). One of their tasks was advocating for the state to pass Act 27.351, which established a patient registry and guaranteed that they would have continuous electricity, although these benefits have been affected under President Javier Milei, according to AADED.

Patients register on a list managed by the Argentine Ministry of Health, which updates it monthly and shares it with the Ministry of Energy, which then sends the data to provincial governments. Stefanizzi explained that these governments cover the patients’ entire electricity costs. “It costs the Argentine state less to pay for the electricity for the patient at home than to have them in intensive care in a hospital. As part of the law, their power cannot be cut off,” he added. The Argentine government operates under the premise that if electric companies cannot control outages, they are responsible for covering the costs of backup equipment, such as batteries, so that electricity-dependent individuals can connect their devices. “The company monitors homes remotely, and if the batteries are running low, they will replace them and send an electric generator.”

Colombia and Chile also have registries of electricity-dependent populations.

On June 18, 2024, in a press conference held in response to the continuous and massive blackouts that month, Dr. Carlos Díaz Vélez, president of the College of Physicians and Surgeons, said interruptions in electrical service exacerbate Puerto Rico’s public health crisis. They delay treatments, surgeries, and lab tests for the general population, and overload hospitals with electricity-dependent patients who arrive because they lack power at home. The physicians recommended that Pierluisi implement a plan to ensure the energy crisis does not further harm public health, including creating a census of those dependent on electricity.

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This investigation is partially supported by the Hispanic Federation and The Fund for Investigative Journalism.