More than 100,000 people across the nation are waiting on an organ transplant. Every day, an average of 22 of them die. The majority of them come from minority ethnic backgrounds.
Nationally, more than 30 people on the waitlist are Black. Another 22,000 are Hispanic. Nearly 10,000 are Asian/Pacific Islander. About 1,000 are Indigenous, and more than 1,200 identify as multiracial.
“The majority of Nevadans waiting on a transplant are from the multi-ethnic communities, too,” said Janice Whaley, the CEO of organ procurement organization Donor Network West. “They’re people of color—13.7% of Nevadans waiting are Black; 25% of Nevadans waiting are Hispanic; 15.5% are Asian Pacific Islanders; .6% are American Indian, and 1.9% of Nevadans waiting are just multi-racial. I think there are currently over 600 people waiting, and, obviously, the majority are from multi-ethnic communities.”
Whaley called the waiting list and its composition daunting. She said it’s why the month of August has been deemed National Multiethnic Donation Awareness Month. Its purpose is to encourage people from minority backgrounds to become donors—and to raise awareness of the disparities in who’s on the list and who’s receiving organs.
She said those involved in organ procurement and transplantation organizations have in recent years begun looking at the process that allows people to get on the waiting list to see if there are inequities for people from minority backgrounds—things like having the right support system and ability to pay for and receive follow-up care.
“Is it biased toward a particular community?” is one question, Whaley said. “If you’re identifying if they have a support system—and in some minority communities the support system does not look like that of maybe the Caucasian community–how do we make sure that we don’t use that to unintentionally disallow someone to be put on the list? So, how we question patients, how we identify how they can be cared for after, needs to be equal across the board. And right now, there’s some biases that I think the transplant community is looking at to ensure it doesn’t prevent people from that type of access.”
While it’s not necessary that donors and recipients of organs be from the same racial background, Whaley said there is some evidence it can be beneficial.
“It is true that organs are based on a sense of emergency and blood-type matching,” she said. “But there are also studies out there specific to kidney transplantation that say that if I needed a kidney, my chance of the graft, the kidney, functioning in my body is better if I get a donor who is of my … race. There are a lot of studies out there that are looking at that.”
Myths persist about organ donation
Whaley said an important goal for the month is dispelling misinformation about donations that are prevalent among all communities, including minority communities.
One misconception is that emergency responders and medical professionals will not work as hard to save the life of a known organ donor. This is entirely false, she said, adding that doing everything in their power to save the lives of organ donors is necessary to keep the person’s donatable organs in good enough condition to be transplanted.
“This month is dedicated to trying to dispel myths and misconceptions about donation and really place some emphasis on, ‘Hey, people who look like you are also waiting on the list,’” she said.
Another problem, according to Whaley, is that many people decide for themselves that they’re not eligible to donate organs based upon their health conditions or lifestyle choices like drinking and smoking.
“Regardless of your age or your health, what we ask people to do is still register to be a donor because science has done some amazing things,” she said.
People can register to be a donor at the local Department of Motor Vehicles or DonorNetworkWest.org. Whaley recommends telling your family and friends about your decision to ensure it will be respected should something happen to you.
“We always envision a day where everyone has the opportunity to donate, and everyone who needs a transplant gets one,” she said. “It goes back to the human responsibility to give that gift of life. We’re hoping that message is going to resonate through our educational efforts.”
Hoping for a second chance
For 23-year-old Renoite Itzel Ponce-Gomez, the message has resonated. She’s both a registered organ donor and awaiting a kidney transplant.
For the past six years, she’s been on dialysis treatments to keep her kidneys functioning as Lupus attacks them. Ponce-Gomez was diagnosed with Lupus at age 12 and has been on the waiting list for a kidney for the past eight years.
“I feel like not a lot of people are well informed about organ donation and are afraid of all the myths they hear about being registered as an organ donor. I personally myself was until I started dialysis and became an ambassador with Donor Network West,” she said.
She added that being on the waiting list provides hope for people to get a second chance at life.
“I pray every day that I get that phone call that they have a matching kidney for me,” Ponce-Gomez said. “But, until then, I depend on dialysis to keep me alive. I want everyone to know that by saying yes to donation, one person can save up to seven lives. You never know if one day you or a family member may need an organ transplant.”
