People of color urged to register for organ donation

Adriana Gonzalez-Chavez

Cronkite News

When Rocio Muñoz and her husband, Gerardo Huerta, learned in 2016 that Muñoz was suffering from kidney disease, they were left in disbelief, with no idea what next steps to take.

“No lo aceptas,” Huerta said in Spanish. “You don’t accept it.”

They were told that Muñoz would soon have to undergo dialysis and wait five to eight years to receive a transplant that could save his life.

“It’s very difficult to learn that your loved one is sick and needs an organ donation,” Huerta said. “That’s when you start thinking: maybe we could do something for them.”

Huerta, who lives in Chicago, is an outreach coordinator for the National Kidney Foundation of Illinois, working to encourage Hispanics to register as organ donors to help overcome deep disparities among those in need. – and those who donate – organs.

About 60% of the 106,000 patients waiting for organ donation in the United States are people of color, with black, Hispanic and Asian patients being disproportionately represented on the waiting list, according to national statistics. The vast majority of those 106,000 people are waiting for kidneys.

Blacks make up 13% of the US population but 28% of those needing organs, while Hispanics make up 18.5% of the population but nearly 21% of patients waiting for organs. Asians make up 6% of the population but 8% of those on the organ waiting list.

In contrast, among organ donors since 1988, 70% were white, 13% black, 13% Hispanic and nearly 3% Asian, according to statistics from the National Organ Procurement and Transplantation Network.

Nationally and locally, advocates are doing more to encourage people of color to become donors. Experts note that the organs are not matched based on race or ethnicity, but say racial or ethnicity may allow for a better match, especially in the case of certain immune system markers that are important in kidney pairing.

And about 85% of people waiting for transplants need kidneys.

In Arizona, 1,600 people are waiting for transplants and about 31% are Hispanic. About 83% of patients are waiting for a kidney.

Nico Santos, media relations specialist at the Donor Network of Arizona, encourages Hispanics to sign up as donors, pointing out they could be helping someone in their own community.

“When you sign up, there’s a slightly higher chance that you’ll be helping someone who looks like you or lives in a neighborhood like yours or speaks the same language as you and your family,” he said. declared.

Santos’ group typically hosts or participates in up to 400 outreach events a year to encourage people from diverse backgrounds to sign up as donors. Some volunteers are organ recipients themselves and share their stories to help persuade others.

But most of those events have been postponed amid the COVID-19 pandemic, and outreach has been relegated to social media.

Despite the disruptions, after a slight dip in 2020, the number of donors in Arizona rose to 443 last year, according to national statistics. Santos urges registrants to speak with friends and loved ones about their decision to become donors.

“We are headed in the right direction,” he said, “but naturally we want more because the waiting list continues.”

Hispanics are more likely than non-Hispanics to need dialysis or a kidney transplant once they have kidney disease, said Dr. Sylvia Rosas, the first Latina president-elect of the National Kidney Foundation and physician at the Joslin Diabetes Center in Boston.

“When you look at the proportion of people with chronic kidney disease, Hispanics are a bit less (affected), but when you look at who’s on dialysis, Hispanics are twice as likely as non-Hispanic whites to be on dialysis,” Rosas said. “We go through chronic kidney disease faster.”

According to the National Kidney Foundation, blacks are more than 3 times more likely than whites to have kidney failure, and Hispanics are 1.3 times more likely.

Even before the onset of chronic kidney disease, some Hispanics decline more rapidly. A 2010 study found that Dominican patients have the fastest rate of decline in these cases, followed by Puerto Ricans.

Dr. Andres Serrano, a kidney specialist at Mount Sinai Hospital in Chicago, said disparities in kidney disease and the rate of decline among Hispanics are due to factors such as lack of access to health care or insurance, language barriers, nutrition and food.

Like diabetes and high blood pressure, kidney disease can be a “silent disease” with few obvious symptoms and may go unnoticed until it’s too late.

“The absence of symptoms doesn’t prevent you from having kidney disease,” Serrano said. “The only way to really know if you have kidney disease is to get tested.”

Serrano recommends periodic screenings with a blood or urine test, even if a patient shows no signs of illness. If caught early, medications and other interventions can help. But chronic kidney disease usually has no cure.

Muñoz found himself on dialysis for several years. Her heart became so damaged that she had to undergo open-heart surgery, delaying any transplants until she could recover.

She remembers sometimes being in the hospital, hearing helicopters coming and going, and
wondering, “Do you think they got the kidneys in there?”

“It felt very long to me,” she said.

Then, on Christmas Day 2019 – 3½ years after his diagnosis – the wait was over: Muñoz finally got his kidney.

“Muy bonito regalo de navidad me dieron,” Muñoz said. “They gave me a nice Christmas present.”

Today, Muñoz, 55, and Huerta, 56, are doing what they can to persuade others to become donors.

“It’s the most beautiful gesture of love for another human being,” Huerta said.

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