A Kidney for Eliécer

Eliécer Aguiar came to the world on September 9, 2006, with a bladder too small for his size and a pair of kidneys that only lasted 11 days.

Still a newborn, his mother, Emily Aguiar, rushed him to the hospital when she saw dozens of weeping sores filled with pus all over his tiny body.  

Eliécer’s very first blood test came back with abnormal results. He had high levels of creatinine and urea in his blood, low sodium and potassium up to the roof. By the end of the day, doctors had a diagnosis: severe kidney failure. Eleven days after being born, Eliécer’s kidneys had stopped working.    

Twelve years have gone by and Emily has seen her child endure everything: several surgeries, repeated hospitalizations that seem to last forever and five years of treatment at the dialysis unit of the Hospital J.M de los Ríos, Venezuela’s biggest and most important children’s hospital. 

Eliécer has learned to be a good patient. He knows how to wait, sitting still, gripping between his tiny hands the Nintendo DS his mom and uncle got him almost six years ago, to help him forget the boredom and sadness of having to celebrate his seventh birthday at the hospital.

The device is his favorite distraction. He plays, his black shiny eyes fixed on the tiny screen, and waits for everything to fade away.

He never complains.  

In the same way, he awaits for the only thing that can save his life: a kidney transplant.

Organ procurement from deceased donors has been suspended in Venezuela since June 2017, when the government-run Venezuelan Foundation for Organ, Tissues and Cell Donations and Transplant (Fundavene), the entity in charge of managing the organ procurement and transplant system, announced the temporary suspension of all transplant-related activities, citing deteriorating hospital infrastructure and scarcity of post-transplant medication as the main reasons motivating the decision.

Eighty-five percent of transplant patients report always having difficulties to find their prescribed immunosuppressants, a post-transplant medication they must take for life to prevent their bodies from rejecting the new organ, according to the National Immunosuppressants Survey, a study by the Organizations of Transplants of Venezuela (ONTV) and the Venezuelan Nephrology Society, which collected data about the current situation of transplant patients in the country.

For transplant patients, access to immunosuppressants is critical to guarantee a transplant’s long-term success. Patients who do not take this medication regularly and as directed often present medical complications and risk losing their transplanted organ. In the most extreme cases, they may even risk death.

According to data from the Immunosuppressants Survey, 98 percent of transplant patients regularly present medical complications whenever their post-transplant treatment becomes unavailable in the country.

By April 2018, the survey registered 54 transplant patients who went back to dialysis, due to medical complications caused by not taking their medication. Other 47 patients lost their transplanted organ. Twenty-six patients died.

Inside the Hospital J.M de los Ríos, patients awaiting a transplant face a critical situation. At a press conference held on April 9, 2019, Prepara Familia and Cecodap, two NGO’s that work for the defense of children’s rights in Venezuela, warned that a group of 20 children who suffer from different blood diseases and are being treated at the hospital urgently require a bone marrow transplant to survive.

Fundavene used to have an international cooperation agreement with the Association of Bone Marrow Transplant of Italy, to send Venezuelan children from low-income families to receive treatment in Europe, funded by the Venezuelan government through PDVSA, the country’s state-owned oil production company.

The program worked since its creation in 2006 until 2018, when it was halted because the Venezuelan government failed to make payments to the Association of Bone Marrow Transplant of Italy to cover for the program’s annual operations. As of January 2019, the Venezuelan government’s accumulated debt to the program was at 10.7 million Euros ($11.2 million).

According to Venezuela’s Minister of Foreign Affairs, Jorge Arreaza, the program had been forced to stop due to the economic sanctions imposed in May 2018 by the U.S. Treasury Department on the Venezuelan government.

“The health program with Italy was executed through CITGO, which was confiscated by the United States. Venezuela sent the required funds through PDVSA and they were withheld by the Portuguese bank Novo Banco, thanks to the sanctions and the criminal blockade,” the minister said.

Four children died at the Hospital J.M de los Ríos in May 2019 waiting for a bone marrow transplant. They were six-year-old Giovanni Figuera, seven-year-old Robert Redondo, eight-year-old Yeiderberth Requena and eleven-year-old Erick Altuve, all part of the same group of 20 children that had called for urgent action just a month before.   

On March 18, 2019, Carlos Rotondaro, ex-president of the Venezuelan Institute of Social Security, the government entity that distributes high-cost medication such as chemotherapy, immunossuppressants and dialysis material among hospitals and pharmacies nation-wide, said that the number of patients in dialysis in Venezuela fell from 14,824 in 2017 to 11,000 by the end of 2018.

According to Rotondaro, over 3,000 patients with kidney disease died during that period, because of the malfunction of dialysis units across the country and the many faults of the public health system.

Medical literature suggests that in any given country, roughly 40 percent of patients in dialysis could be suitable candidates for a kidney transplant. In Venezuela, an average of 1,600 patients were enrolled on the national waiting list for a kidney in the years prior to 2017, when organ procurement stopped.

As of June 2019, the ONTV estimates that over 500 patients who could have gotten a transplant in the two years since the paralization of organ procurement did not have access to this option. At least 10 percent of them are children, who face an increasing risk of dying as their medical conditions keep deteriorating.

It all started with the bladder.

That first emergency that started just days after Eliécer’s birth lasted for over a month, until doctors at the pediatric hospital finally found the root of the problem. 

Eliécer’s bladder was small. So small that it filled up with urine too quickly. When it reached its maximum capacity, part of the liquid drained back to the kidneys, drenching them into toxins that needed to be eliminated from the body. His kidneys resisted eleven days. Then, they collapsed.

Eliécer’s first medical crisis left him hospitalized for five months. He knew the pain of an injection needle before he could learn to walk. Before saying his first word, he was sleeping in a wooden cradle, with a catheter creeping out from under the skin near his belly button, twirling and twisting, until it reached the peritoneal-dialysis machine that did the work his kidneys could not.  

Emily connected her baby to the machine every night, right before bedtime. She infused 1.6 ounces of a special solution and left the machine do the rest. It ran for four hours, absorbing toxins and waste, water excess and body salts. After the first cycle, a second one of four more hours followed.

And so, the night would go by. Until Eliécer’s room filled with the yellow, morning light. Then, Emily checked the time and disconnected him. Never before hitting the mark of 13 hours of dialysis, just like doctors had told her.   

The origins of the Venezuelan organ procurement system date back to 1997, when a group of doctors specialized in transplants joined to create the National Organization of Transplants of Venezuela (ONTV, by its acronym in Spanish). The NGO was born with the mission of professionalizing transplant activity in the country and facilitating access to transplants for the Venezuelan population.

The ONTV designed a platform for the organ procurement system to function, borrowing elements from the systems used at the time in the United States and Spain, and adapting them to the Venezuelan healthcare context. In 2001, the national government designated the ONTV as the entity in charge of running the country’s organ procurement system, which comprised the logistics to retrieve organs from deceased donors to be used on transplants and the management of the national waiting list.

Transplant activity grew steadily in the following years. According to the ONTV’s records, the number of kidney transplants made in the country went from 139 in 2000, to 345 in 2007, an all-time high for transplant activity in Venezuela.

Dr. Pedro Rivas, transplant surgeon, ex-president of the ONTV and director of Fundahígado, Venezuela’s only active liver transplant program, says that the country’s organ donation rate increased from 0.7 donors per million inhabitants in 2001, to an average of four donors per million inhabitants in 2012. Some regions in the country were even over the average, with a rate of seven donors per million inhabitants.

By the end of 2013, under the ONTV’s management, the system counted over 3,400 kidney transplant patients across Venezuela. More than 2,000 of them had received an organ from a deceased donor.

But in 2014, the Venezuelan government under Nicolas Maduro’s administration, created the Venezuelan Foundation for Organ, Tissues and Cell Donations and Transplant (Fundavene) and transferred the management of the organ procurement system to them.

Under this new institution, transplant activity and organ procurement in Venezuela began deteriorating, until in 2017 the country’s organ procurement system stopped working entirely.

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Emily’s prayers for a donated kidney were heard once. Eliécer was one of 96 patients who received a kidney transplant from a deceased donor in 2015. He was eight years old.

On July 16, 2015, Emily woke up at three in the morning, as always. It was “dialysis Thursday,” as she used to call it, which meant they had to travel two hours from their home in the coastal town of La Guaira to the pediatric hospital in Caracas.

Her mornings where a well-rehearsed routine. She went to the kitchen and placed the budare, tinged with vegetable oil, on top of the stove. She mixed the corn flour with water and a pinch of salt to make the dough for the arepas. She took a quick shower, short enough to run back to the kitchen before a burning smell could spread in the air.

Emily opened the fridge and took out two plastic food containers with the lunch she had prepared the night before. She wrapped the arepas in aluminum foil and put everything inside a worn-out pink-fabric backpack. Then, she walked down the dark corridor to wake Eliécer up.

At 3:45 a.m., they were already out the door, with just enough time to climb the 72 steps that separate their house from the neighborhood’s main avenue. Once at the top, they waited for the bus that would take them to Caracas. At six in the morning, they walked through the hospital’s doors.

A doctor waited for Emily at the dialysis unit.

“There is a potential donor for Eliécer,” she said. “Don’t give him any food. At 10:00 a.m. I will know if the organ is for him.”

A few hours later, Emily heard the good news. It was for him. A compatible kidney from a deceased donor. The procurement system had assigned the organ to Eliécer, among all eligible patients registered in the national waiting list.

Emily gasped. As the doctor walked away, she stood still, her eyes fixed in the vacuum, trying to assimilate the news. There was a kidney and it was for her son. After all the years, the sleepless nights, the early morning-rising, the needles and IV’s, the countless pills, the medical tests and the yearning, her son had a chance.

Eliécer didn’t eat his mother’s arepas that morning. He waited, quieter than usual, outside the dialysis unit, while doctors prepared the operating equipment and found an anesthesiologist on duty. At 1 pm, everything was ready.

Emily and Eliécer held hands as they walked together to the entrance of the operating room. They said goodbye when a nurse came to escort the child inside.

Emily held her breath for an instant, as Eliécer disappeared behind the iron doors.  

Organ procurement in Venezuela hit its record in 2012 when the system, still under the ONTV’s management, retrieved and transplanted 240 kidneys. In 2016, only two years after Fundavene took over the organ procurement system, the number of kidney transplants made with organs from deceased donors fell to only 25, according to data by the ONTV.

That year, only four of the nine public hospital transplant centers across the country made kidney transplants with organs from deceased donors. All of them combined accounted for only 16 transplants out of the total 25 made that year. The rest were transplants made at private hospitals.

Transplant centers within the Venezuelan public hospitals network are funded by the government, which for years allowed patients to access transplants for a relatively low cost.

With the halt on organ procurement and the majority of transplant centers either closed or inoperative, patients only have the option of getting a transplant at a private hospital, where the cost of the procedure is significantly higher and out of reach for many Venezuelans.

“There are two variables that do not exist today: there is no organ procurement and there is no funding,” says Dr. Rivas. “What is suspended is the State’s support. The State’s pocket is no longer there for low-income patients. To have a transplant, you need to have your own financial resources and a living, compatible donor. If you don’t, you will not have access.”

Only three private hospitals in Caracas still keep their transplant programs open: Clínica Metropolitana, Clínica Santa Sofía and Clínica La Floresta. According to Rivas, the cost of a kidney transplant in any of those centers oscillates from $16,000 to $25,000. A liver transplant is more expensive: $60,000 to $80,000. “That can be a person’s life savings,” Rivas says, “the system now is horribly discriminatory. If you don’t have the money, you just don’t have access and you won’t be able to do anything.”

In the first six months of 2017, the number of transplants made with organs from deceased donors fell to only nine. No official figures related to transplant activity have been published since organ procurement stopped in June 2017.

Fundavene never responded to several requests for an interview.

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The crisis has also crawled inside public hospitals, where 52 percent of the basic medication required to treat emergencies is not available, according to the National Hospitals Survey, a study published in February 2019 by the NGO Red de Médicos por la Salud, which monitors the state of the healthcare system. The report also found that 1,557 patients died in Venezuela between November 2018 and February 2019, of causes attributable to the lack of medicine and medical supplies within the country’s public hospital network.

Transplant centers cannot escape this reality. In the National Immunosuppressants Survey, 72 percent of doctors who specialize in the area of transplants agreed that the lack of medical infrastructure was one of the major reasons why organ procurement stopped. Sixty percent of them also cited problems with supporting services such as x-rays, intensive care and laboratory as another cause.

According to Dr. Carmen Luisa Milanés, a specialist in nephrology who worked as an adviser for the Donation and Transplant Program at the Ministry of the People’s Power for Health until 2014, the country has lost around 80 percent of the specialized human resource in all medical areas related to transplants, including nephrologists, trained nurses and surgeons, many of whom have emigrated looking for more stability and better working conditions.

The Nephrology Service at the pediatric Hospital J.M de los Ríos had an original capacity of 20 patients to be hospitalized. Now, that capacity is reduced to just five patients, due to the lack of medical personnel.

“From a total of eight nephrology specialists we should have, we now have only three; and from six residents, we have only two working as of today,” said Dr. Belén Arteaga, pediatric nephrologist and Chief of the hospital’s Nephrology Service. “We are offering a service that, although it helps, is not optimal.”

“A transplant program must work within a functional hospital; and that means there have to be pulmonologists, gastroenterologists, endocrinologists, because transplant patients often present many different pathologies,” said the doctor from a public hospital in Caracas who requested anonymity to preserve their safety. “No transplant can be done in the current conditions.”

Dr. Milanés explains that the faults in the public hospitals network and the Venezuelan health care system ended up making transplant activity unsustainable.

“It is absolutely irresponsible to keep the organ procurement system active, producing donors, when transplant centers cannot function because they do not have induction therapy, or because the patient’s post-transplant treatment is not available. That is not right, is not ethical,” said Dr. Milanés.

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