MINNESOTA, USA — There are more than more 100,000 people on the waiting list for an organ transplant. Of those waiting for kidneys, a majority of them are people of color.
They're not only overrepresented on that list, they are underrepresented in the donor pool. Sam and Frances Fernandez are trying to change that.
When Sam was just 16 years old, doctors told her family she had end-stage renal failure. The disease is the final stage of chronic kidney disease, when the kidneys can no longer function.
"Our whole family was devastated," said Frances. "Our whole family was devastated."
"It really just scared me to think of what would happen if I couldn't get a kidney," said Sam.
A year later after the diagnosis and lots of dialysis appointments, Sam got her match and is hoping to learn more about her donor's family. In the meantime she's studying at St. Catherine University to be a social worker and raising awareness of disparities with LifeSource, a Midwest-based nonprofit that assists with organ donation and education.
Frances, who is Faculty Director of Healthcare Management at the University of Minnesota who teaches Diversity, Equity and Inclusion in healthcare, said she sees hesitancy within the Hispanic community.
"There's a lot of stigma," said Frances. "They think your body will not be able to be viewed if you pass away, and you check that box to be an organ donor, and that's further from the truth."
"On the national deceased donor waiting list, about 58% are people of color," said Dr. Sarah Kizilbash, the director of the pediatric kidney transplant program at M Health Fairview.
She studied donors who gave to children in the past 30 years, and only a quarter were people of color. She said, while it's not necessary, it's easier find a good match if the two are from similar racial backgrounds.
"The better the match, the better the outcome," she said.
Sam and Frances hope their story will encourage communities of color to have conversations about organ donation.
"It's huge, you're giving the gift of life," said Frances.
"I'm just really grateful to the family and to the person who was able to give me a kidney, and I'm sorry for their loss, but I'm very grateful for them," said Sam.
LifeSource says it's easy to become a donor. They have simple tips on their website.