For These Puerto Rican Kids, A Spot on the Transplant List Comes with a Price Tag

Jarianna Cruz seems like any other ten-year-old girl.

In San Juan, Puerto Rico, where she lives, Jarianna loves to write and do arts and crafts. Smart and social among her peers, she responds in a near-whisper when a stranger singles her out. She’d much rather drink milkshakes and juice than water.

But in one way or another, Jarianna has always been fighting for her life. Born with a spate of health problems, she spent her infancy in and out of hospitals. Her kidneys began failing when she was three years old. By the time she was four, they’d stopped working entirely – a liability rather than a help – and her doctors had them removed.

“She was born with this condition…and I’ve always been open with her, and everything that she is going through, I’ve explained to her,” Jarianna’s mother, Janice Montalvo, said through a translator.

Until recently, Jarianna spent three to five hours, four days a week, in dialysis at the Dr. Antonio Ortiz University Pediatric Hospital in San Juan. She badly needed a new kidney, but for a long time wasn’t even on the transplant list. To be eligible, she needed $3,000 in an escrow account – and her mother wasn’t able to come up with the money.

Jarianna wasn’t alone. She was one of 25 Puerto Rican children fighting end-stage renal disease – almost all of whom couldn’t find the few thousand dollars required to reserve them a spot on the transplant list.

A transplant center – essentially, any hospital that has a transplant program – can make the decision to deny people a place on the transplant list until they’ve proven that they’re in a good financial position to care for the organs.

With the help of a Direct Relief grant, Jarianna received a new kidney in July after a successful operation.

“She will be able to go to the beach and have fun there. She is very strong, and a fighter,” Montalvo said.

The Financial Picture

When a hospital turned down a Michigan woman for a transplant for financial reasons in 2018 – and suggested she try to fundraise $10,000 – it drew headlines.

But it’s common for transplant centers to demand evidence of good financial health before giving a patient a spot on the waiting list, said Anne Paschke, director of media relations for the United Network for Organ Sharing, which runs the nationwide transplant registry and is in charge of allocation policy.

On top of paying up-front costs like copays, she said, “you also need to demonstrate that, down the line, you’ll be able to care for the organ.” Paschke described a lung-transplant patient who was told he needed $50,000 before he could join the transplant list.

“I have never met a center that did not look at the financial picture,” said Michelle Gilchrist, president and CEO of the National Foundation for Transplants, a nonprofit group that helps patients meet the financial costs and requirements of an organ transplant. “They know what they commonly see, and they don’t want to be stuck with a cost they can’t write off.”

Moreover, the decision to list a patient is completely at the discretion of a transplant center, Gilchrist said. “You can have the same insurance, same condition, same organ [need], have the same available finances, and if you’re at two different transplant centers, one may list you and one may not.”

Because she had end-stage renal disease, Jarianna was able to receive Medicare benefits, which means that her transplant costs will be covered, along with 36 months’ worth of drug therapy. However, she’ll need to be on anti-rejection drugs for life, and Medicaid will need to take over at that point.

The $3,000 isn’t even designed to cover anti-rejection drugs, explained Marta Suarez, the pediatric nephrologist who oversees Jarianna’s care. Instead, it’s there to cover incidentals like transportation and medicine up front, in case an infection or other emergency comes up.

Organs are Precious

“Families have to be ready, and ‘no’ cannot be an answer if I need them to come in right now,” Dr. Suarez said. “I don’t care if they have any money for gas, parking, or food or whatever. That cannot be an impingement on them getting the care that they need. And there are so many costs associated with just coming to the one center in San Juan” that does transplants and provides post-transplant care.

For the medical community – and the people waiting for them – organs are precious. As of March 2020, more than 112,000 people were on the national transplant waiting list, according to the government’s Health Services and Resources Administration. While about 60% of American adults are registered donors, only about three in 1,000 people will die in a way that allows their organs to be donated. And 20 people will die in the U.S. each day waiting for an organ transplant.

While Dr. Suarez wants the best for her patients, she feels a responsibility to make sure that every donated organ is protected from the kinds of delays that can jeopardize its safety.

Although the children awaiting transplants are either on Medicare or Puerto Rico’s Medicaid equivalent, Dr. Suarez said that insurance payments come slowly, and are a liability for something as time-sensitive as a transplant-related infection.

$3,000 doesn’t sound like a lot. It’s not actually necessarily enough to meet those incidental expenses if something goes wrong.

But for people in Puerto Rico, where the median income is about $20,000 per year (compared to about $60,000 for the States), it’s a huge expense. And a child’s illness can make a regular income near-impossible, Dr. Suarez said.

“80% of our families don’t have the social means,” she said. “They have low paying jobs – if they work, because if their kids are really sick, they really can’t work.”

Because of the pandemic, Montalvo has been unable to work. The two of them require food stamps to meet their monthly needs.

For several years, it wasn’t actually possible for a child to get a transplant in Puerto Rico. In 2013, the island lost its only two surgeons who did pediatric transplants. It was 2017 before they found another one. The hospital held a gala to pay for a new transplant center.

Then Hurricane Maria hit, delaying transplant surgeries until May of 2018.

Since 2013, two children who were unable to get transplant surgery have died. Another, who was finally transplanted in July of 2019, had been on dialysis for eight years.

“No patient should have to wait that long, but we didn’t have a transplant center,” Dr. Suarez said.

A Lifelong Battle

Being on dialysis – at all – is dangerous. Children on dialysis are at high risk for peritonitis – inflammation of the abdominal membrane – bloodstream infections, and even heart attacks. Dr. Suarez explained that the process of dialysis, which involves essentially pulling water out of the blood, places an enormous strain on the heart.

If you were to track 1000 female dialysis patients under the age of 21, 33 of them would die within a year, according to the United States Renal Data System.

For those 25 children, Direct Relief is stepping in. The organization is providing the money each child needs through two Puerto Rico-based nonprofits, Yo No Me Quito and Extra Bases – the latter headed by the former Major League baseball player Carlos Delgado.

The organization is also paying for a pediatric renal transplant coordinator, who will work over the next two years to streamline the process of getting each patient onto the transplant list.

Jarianna was the first of the children to receive a transplant. One other child has also successfully undergone a transplant procedure.

The grant is a temporary fix. Someone is added to the transplant waiting list every 10 minutes. But for these children, it’s a lifesaving chance.

“This is a lifelong battle,” said Dr. Suarez. But nonetheless, she insisted, “they don’t have to die from this.”