Need for minority organ donors is acute, says suburban group matching recipients

When Tiffany Zuniga's husband, Alex Zuniga, died unexpectedly of a brain hemorrhage in 2017, she wanted to honor his giving spirit by donating his organs.

The couple had talked about the importance of organ donation when they worked together for Elmhurst-based Superior Ambulance, believing it to be a beautiful gift one can give to help others. The duo signed up to be donors.

“There were a lot of what-ifs, but he still knew that he wanted to do it,” said Zuniga, 29, of Palatine. “We went through a really tough time. It's very bittersweet. You carry this pain around with you from losing that loved one, but in the back of your mind, there is still a piece of them being able to live on and you are able to help somebody else. That is kind of what helps me keep going.”

Alex Zuniga, 26, was Latino and a loving father of three. His liver helped save the life of a man in his 50s.

Zuniga said there are many misconceptions about organ donation among ethnic communities, but the need for minority donors is acute.

“If people sign up to be organ donors, it kind of takes the pressure off the family as well,” said Zuniga, referring to the emotionally difficult decision survivors can face making the decision on what their loved one would have wanted.

Zuniga, who is half Hispanic, half German/Polish, has talked openly about being an organ donor with her three young children and her mother. “There are so many people (waiting for organs), it could change their lives completely.”

There are more than 109,000 people on the national transplant registry. Racial and ethnic minorities make up nearly 60% of those waiting for lifesaving organs in the United States, but only make up a third of registered donors, according to Itasca-based Gift of Hope Organ and Tissue Donor Network, which matched Alex Zuniga's liver with a recipient.

In Illinois, there are roughly 1,450 African Americans, 800 Hispanic Americans and 240 Asian Americans waiting for organ transplants.

While anyone can donate organs to anyone else, having donors of the same race/ethnicity as recipients makes finding a match easier, said Marion Shuck, director of family services and community outreach for Gift of Hope.

“It can decrease the possibility of organ rejections,” Shuck said. “Obviously, the blood type has to be right.”

Shuck, who is Black, has a brother on the waiting list for a kidney. She and her sister are awaiting testing to see if they are a match to be living donors.

Finding a match within family members isn't always a given and can be problematic for communities of color due to shared lifestyles, propensity for chronic illnesses, such as hypertension, diabetes, high cholesterol and blood pressure, and other health challenges.

“A friend of mine had nine siblings. None of the siblings could match, because they all had some predisposed illnesses that would have compromised them if they were living donors,” Shuck said.

African Americans' general mistrust of the health care system results in a lot of undiagnosed conditions that could lead to organ failure, she added.

“Some families have multiple people on dialysis because diabetes is prevalent,” Shuck said.

Lack of understanding of the organ and tissue donation process is partly the reason why there aren't enough minority donors.

“Education is definitely needed across this country,” Shuck said. “We have a need for people to register as organ donors and we also have a need for people to consider being living donors.”

In 2019, there were a total of 19,267 donors — 11,870 were deceased and 7,397 were living — and 70% of all donors were Caucasian, 14% were Black, 12% were Hispanic and 2% were Asian. Minorities comprised 32% of deceased and living donors and 46% of organ transplant recipients in 2019, Shuck said.

States have their own individual registries of organ donors. There's also the national registry run by Donate Life America.

Signing up new donors in minority communities has been challenging due to COVID-19 hampering outreach efforts.

Gift of Hope has a team of six community outreach specialists focused on educating Black and Latino communities about the donation process. Without live community events, such as parades, church gatherings and school sporting events, to register donors, the team is doing virtual outreach through social media.

“We invite people to tell their stories,” Shuck said. “People need to see people that look like them ... we need to create a supportive, positive culture for donation. We plan for a lot of things, but we don't plan for the one thing that is going to happen to all of us, and that is death. We want everybody to have the conversation.”