Puerto Rico Senate Health Commission did not give way to Senate Bill 281 proposing a Dialysis Patient Registration and Patients with Mobility Needs Act. The negative report issued in September states that, although the Department of Health (DS) and the Department of Public Safety (DSP) favor the bill, both agencies condition their support. Health indicated that “what is proposed in Senate Bill 281, regarding kidney patients, is already addressed and does not require legislation.”

As for updating information in the Patient Registry, Secretary Carlos Mellado told the legislative commission in a written statement: “We believe these update procedures are not the responsibility of the Department of Health since we do not have the human resources to do it. However, we recommend amending Senate Bill 281 so that this obligation falls on the OMMEs [Office for Emergency Management], as part of the readiness process prior to the hurricane season.”

Meanwhile, DSP said similar initiatives to create a registry have not materialized in the past because federal entities warned that it goes against patient rights.

The DSP also said that several responsibilities pointed out in the bill — which in addition to the registry proposes creating an action plan to protect these patients — should fall on the Health Department and the municipalities.

In the case of the Mayors’ Association, the organization did not favor the measure, believing that it places a burden on the municipalities which belong to the central government. The Mayors Federation offered partial support, arguing that not all municipalities have the resources and the availability of hospitals to meet the legislative measure’s proposed requirements. 

The negative evaluation of the Senate Bill joins other unsuccessful efforts to create a database that helps serve Puerto Rico’s renal population during emergencies.

In the wake of Hurricane María in September 2017, several proposals emerged to create a Puerto Rico Kidney Patient Registry. Last year both legislative bodies approved the proposal unanimously. However, the measure was vetoed by then-Governor Wanda Vázquez Garced.

“The importance of this registry is that it could help us, not only in an emergency, but it was also a useful tool for detection, early diagnosis, and early healthcare services. And when there are emergencies, to be able to locate patients quicker and be able to give them the care they need,” Angela Díaz, executive director of the Puerto Rico Renal Council, told the Center for Investigative Journalism (CPI, in Spanish).

“The deaths [in the weeks after Hurricane María] were mostly of patients who were in stage four [of chronic kidney disease], perhaps because they had no control of their blood pressure, their sugar levels, and lacked their meds, so they spun out of control. That’s when we saw the importance of the registry,” added Díaz in reference to the deaths of those who suffered from a serious loss of kidney function. Kidney disease has five stages.

In statements made to the CPI last July, Mellado placed the responsibility of having information about patients with chronic conditions or care during emergency events in the municipalities.

Dialysis centers not classified as priority on LUMA’s power restoration list
Faced with the scenario of a natural event with destructive potential such as a hurricane or an earthquake, dialysis centers are not part of the first level of power restoration priorities in LUMA Energy’s Emergency Response Plan. LUMA is the private company hired five months ago to run Puerto Rico’s energy distribution and transmission.

The executive director of the Puerto Rico Renal Council said that after Hurricane María, representatives of groups that work with kidney patients met with Puerto Rico Aqueduct and Sewer Authority (PRASA) officials to explain the importance of classifying dialysis centers as part of the first level of power restoration.

“When Hurricane María hit, dialysis units were in the third level of needs,” Díaz said.

Despite the ongoing claims of these sectors that work with the island’s renal population, dialysis centers and their patients remain in the second priority level of power restoration when an emergency interrupts the electrical service. According to LUMA’s Crisis Management Manager, Abner Gómez, this responds to the “standard” that applies to centers that offer health services, in which hospitals are in the first priority level.

“We have a list of all dialysis centers with their contact person, and the type of generator they have. Many of them are in a hospital. They are in category two, but that is not meant to discriminate against them. It’s because the hospital has the priority because it handles urgent emergencies. Although dialysis centers are vital to sustain life for people with kidney problems, it isn’t something that will be a life or death situation in a matter of minutes or hours,” Gómez told the CPI.

“Maybe when powering up a hospital, you have the dialysis center nearby, and they are energized at the same time. There are dialysis centers in communities that are far from the main power lines and that will make it difficult to get there. Our expectations are that when the power is back, adequately, power to 80% of the hospitals will be restored in a prudent period. Why the percentage? The reality is that there are going to be hospitals whose power will not be possible to restore because it depends on the type of breakdowns,” said Gomez, former executive director of the Bureau for Emergency and Disaster Management (NMEAD, in Spanish).

LUMA Energy’s position of keeping dialysis centers in the second tier of priorities led representatives of the Puerto Rico Renal Coalition to ask again during a panel conducted by the Journal of Medicine and Public Health, that these places that serve their patients have the same power restoration priority as hospitals.

“We need the government to give us priority in water supplies, as well as [Puerto Rico Electric Power Authority], to give us priority as category one, as well as hospitals. We need their cooperation because our patients depend on dialysis to survive,” María Torres Rivera, director of operations for Fresenius Kidney Care’s metropolitan and eastern areas, said during the panel. Fresenius is one of two entities that offer this type of service on the island. Both are private.

The executive director of the Puerto Rico Renal Council also expressed concern about the ongoing blackouts that affect patients who, due to the COVID-19 pandemic, have chosen to undergo dialysis treatments at home.

“If there were an emergency, I would be very concerned because these machines depend on electricity. With all these blackouts (since LUMA took charge), our patients are already feeling it. If a patient falls ill at home and there is an emergency on the island, who transports them? Who are they calling?” she questioned.

A report commissioned by the CPI entitled “Lack of information in a disaster: Managing information to handle socio-environmental risks in Puerto Rico,” highlights the lack of equipment in the dialysis units, the absence of emergency plans in these health centers and the State’s lack of recognition of dialysis units as priority locations in the restoration of basic services such as water and electricity.

The report shows that a total of 1,746 deaths associated with the lack of dialysis procedures happened after Hurricane María, between September 2017 and June 2018.

As of June 30 of this year, the population of early-stage kidney patients is estimated at 320,000, according to the Renal Council. There are 6,593 people receiving dialysis treatment. Meanwhile, the number of transplant patients in Puerto Rico is 2,220, and there were 276 people waiting for transplants at the end of June.

One of the many accounts that appear the “Lack of information in a disaster” shows the problems that come up when there is no up-to-date information on the population that receives dialysis services. The family member of a dialysis patient told the researchers that: “It was all a botched first aid procedure for the patient. She was discharged in that state, and I had to take her home in that condition, without being told anything, and she went into respiratory arrest at home. We revived her because my granddaughters are nurses. We called 911, she was taken to Susoni [hospital in Arecibo], and she died there. There were problems getting to the unit because the river had overflowed. I was giving her manual dialysis at her home, but she began to deteriorate until she stopped eating. There was no telephone service.”

Puerto Rico has 50 dialysis centers, including a mobile unit on the island municipality of Vieques, nine miles off the eastern coast. Of that total, there are only five in the municipalities in the central mountainous region: Naranjito, Lares, San Sebastián, Aibonito and Cayey.

One of the main access points of the Naranjito dialysis center is through a small bridge over the Guadiana River. It was precisely this river which   flooded part of the town’s urban center after the hurricane. Route 164, which also gives access to the dialysis center, was blocked.

The Public Health in Emergencies and Disasters 2020 Guide includes a map of locations that identifies the municipalities where dialysis centers are located. The map, however, does not provide the exact address of each center. Nor does it indicate which hospitals have the services of nephrologists, who are the doctors who treat kidney diseases. A Puerto Rico Hospital Association spokeswoman confirmed this information, telling the CPI that to get this information, one must “ask each hospital individually.”

“You have the case of Jayuya, in the central mountainous region, which is an extremely difficult place [to get to and move around], despite having its own health center. If [during an emergency] you need a service that is outside the primary center’s scope [such as dialysis], you must leave there by helicopter,” José Seguinot Barbosa, professor at the University of Puerto Rico’s Medical Sciences Campus Graduate School of Public Health, told the CPI.

One year after Hurricane María, a final Action Plan for Dialysis Patients in Emergency Periods was submitted to the House of Representatives. The document establishes a protocol for treating patients after an atmospheric event that interrupts basic services. Although it has contributed to a better understanding by government agencies of the  importance of prioritizing dialysis services, the Plan is not law, as the Puerto Rico Renal Council executive director confirmed to the CPI. That is, it does not force anyone to comply with it.

“It really is quite draining that with every change in government administration, we have to do all these steps again and build new relationships. What’s the public policy of the government to respond to community emergencies, so that we don’t have to be back to square one   every four years? We’re seeing too many staff changes and the agreement that I reached on day one with the legislature, for example, because now the legislature is different, and perhaps the agreement we had with the last administration isn’t honored. If public policy is not established either as a law or as a document that confirms it, we will always be in the same vicious cycle,” said Díaz in the panel in which members of the Puerto Rico Renal Coalition participated.

The CPI contacted Fresenius Kidney Care and Atlantis Healthcare Group, providers of dialysis services in Puerto Rico, for an interview, but they were unavailable. German company Fresenius referred the CPI to its official website. A search shows that four Fresenius centers are excluded from the list when Puerto Rico is looked up on the website: Naranjito, Las Piedras, Aguadilla and Arecibo Norte. Likewise, an initial search using the name of Puerto Rico will display a map with only 10 of Fresenius’ dialysis centers. A representative from Fresenius headquarters in the United States apologized for the omission and said she was unfamiliar with the area.

When asking Atlantis about plans to handle disaster situations, a communications spokeswoman only said that hurricane preparedness plans are coordinated by the central government.

The lack of communication between the DS and dialysis providers was precisely one of the factors that made it difficult to offer services to patients, particularly those residing in rural areas, according to the report commissioned by the CPI. Similarly, patient organizations and the central government’s administration had problems with the flow of information from the Department of Health.

Vanessa Colón Almenas contributed to this story.

Rafael R. Díaz Torres is a member of Report for America.