Hispanics, Latinos are disproportionately in need of donor organs, but less likely to donate

Editor’s note: This story was first published in Illinois Latino News and is republished here in partnership with palabra, the digital news site by the National Association of Hispanic Journalists.

By Hugo Balta

“¡Cumpleaños feliz, te deseamos a ti!” Our family sang “Happy Birthday” to my wife, Adriana. “Cumpleaños felices,” we repeated, raising our voices as she celebrated a different type of birthday — another year with her donated liver. Adriana had suffered from polycystic liver disease (PLD), a rare condition that causes cysts (fluid-filled sacs) to grow throughout the liver, until the selflessness of a young woman saved her life.

Soon after the birth of our first child in 2003, my wife’s aggressive form of PLD became even more severe, deforming her organ further. A healthy liver has a smooth appearance and weighs between 3 and 3 1/2 pounds. Adriana’s polycystic liver, which looked like a cluster of large grapes, weighed just over 20 pounds when it was removed.

The enlarged liver displaced her other organs, complicating her overall health; Adriana would surely have died without a transplant. Her medical miracle happened in her native Colombia. An organ donor, a woman who tragically died in an accident, was a match for Adriana.

In general, about 75% of people who undergo liver transplants live for at least five years, according to the Mayo Clinic. That means that for every 100 people who receive a liver transplant for any reason, about 75 will live for five or more years and about 25 will die within five years. Adriana celebrated 17 years with her new liver last November.

Doctors and advocates say it’s more important than ever to bring attention to the need for organ donors. Approximately every 10 minutes, another person is added to the national waiting list.

I signed up to become an organ donor in 2005, soon after Adriana’s liver transplant. Before then, I was like many Hispanics and Latinos, who are less likely to donate organs than Americans as a whole, according to organ donation experts. At the same time, Hispanics-Latinos are disproportionately in need of donor organs and are less likely to consent to donation than their non-Hispanic counterparts, reports the National Library of Medicine.

“We have transformed the way that they’re thinking (about) and looking at … organ transplantation,” said Dr. Juan Carlos Caicedo, an organ transplant surgeon and director of the Hispanic Transplant Program at Northwestern Memorial Hospital in Chicago. In an interview on WTTW’s Latino Voices, Dr. Caicedo told me that his team of 50 medical professionals at Northwestern Medicine’s Hispanic Transplant Program helps break down language and cultural barriers in the Hispanic-Latino community. “To be able to do it in their own language — knowing their culture, because our team is bilingual and bicultural — and remove all the language barriers and cultural barriers, we have been able to engage them in a positive way,” he said.

Last year, nephrologists at Loyola University Medical Center told Adriana, who also suffers from polycystic kidney disease (PKD), that her kidneys were giving out. PKD is another inherited disorder in which clusters of cysts develop within the kidneys, causing them to become enlarged and lose function over time. As a result, Adriana is quickly reaching the point of needing dialysis.

I quickly volunteered to be tested to see if I could be a living donor for my wife.

Transplant patients are often reluctant to consider organs from their spouses because they may not be a good match in blood and tissue type. Poor compatibility can cause the recipient’s immune system to reject the organ. But a 2018 report in the journal Dialysis and Transplantation found that kidney transplantation from spousal donors “has comparable outcomes to those of other living-unrelated donors, and shortens the time spent on the waiting list.”

Adriana is on that list, and the wait could be as long as three years. Happily, Adriana and I learned that I am a solid match to donate my kidney to her. We will undergo surgery in June.

There are more than 100,000 people currently on the national transplant waiting list. Statistics show that Americans belonging to minority groups make up nearly 60% of those waiting for an organ transplant. Although a transplant can be successful regardless of the race or ethnicity of the donor and recipient, there is a greater chance of long-term survival for the recipient if the genetic background of the donor and recipient are closely matched.

Please consider becoming an organ donor. Americans from every community are needed to help make a life-saving difference. Individuals who register as organ donors can save up to eight lives, while tissue donors can enhance the lives of as many as 100 others, according to the Gift of Life Donor Program.

Some of those donations can take place while you’re living. For example, living donors can give a lung, kidney, or part of their liver, which can almost regrow to its original size.

Next year, my family hopes to add a June birthday for Adriana, the first of many celebrating her new kidney, our family’s love, and the gift of life.

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Hugo Balta is a two-time president of the National Association of Hispanic Journalists (NAHJ) and the owner and publisher of the Latino News Network (LNN).