More than 1,100 American Indians and Alaska Natives are waiting for someone to donate the organ that will save their lives. Most—986—are waiting for a kidney, according to the U.S. Department of Health and Human Services’ Organ Procurement and Transplantation Network (OPTN). Many will not find an organ donor in time.
The shortage of organs for transplant affects all ethnic and racial groups. According to Health and Human Services, 22 people in the U.S. die each day while waiting for an organ.
But the shortage is particularly acute in American Indian and Alaska Native communities where diabetes is rife and the rate of end-stage renal disease is 3.5 times that of whites, according to a 2103 study. American Indians and Alaska Natives wait the longest of any racial or ethnic group in the U.S. between beginning kidney dialysis and receiving a deceased donor kidney transplant.
Misty Wilkie, Turtle Mountain Band of Chippewa, is an RN with a Ph.D. in nursing currently working at Bemidji State University to recruit and train other American Indian nurses. “It’s because we have such a unique genetic makeup and there are so few American Indians who are willing to be organ donors, mostly for cultural reasons,” Wilkie told ICMN. “The cultural belief is that you have to leave this world with the same parts that you came into it with. Otherwise, you don’t go into the spirit world or heaven. So that really deters a lot of people from wanting to be organ donors.”
Lisa Laducer, Turtle Mountain Band of Chippewa, is one of the fortunate people who did receive an organ. About 15 years ago Laducer, an English teacher at Turtle Mountain Community High School, sustained a severe back injury while breaking up a fight between students. Despite four surgeries that left her with rods and bolts in her back and in a full-body brace, the pain was extreme. Because she was a teacher working with kids, the only pain medication she could take was over-the-counter Tylenol and she was not aware that taking a lot of that medication could destroy her liver.
Ten years ago that’s what happened. Laducer collapsed and was rushed to the hospital. She awoke from a coma 32 days later with a new liver. Her body had rejected the first transplant, but then someone who was a perfect match was killed in a car accident, and Laducer received his liver. She is profoundly grateful for the years that donor and his family have given her.
“Organ donation saved my life,” said Laducer. “If it wasn’t for that I wouldn’t be here. We’re a Christian family and my youngest one believes that ‘Mom, God wanted you back here for a reason and we’ve just got to find that reason.’”
While Laducer received a liver from a deceased donor, living organ donors can give a part of their liver, pancreas or intestine, or one kidney, or one lung.
“I have found in my research that there are many, many American Indians who are willing to be living organ donors because they know the person that they’re… kidney is going to,” Wilkie said. “So even if they do have that cultural belief of needing to remain whole, they know that the person they’re donating to is a good person and when they pass on to the next world they are more likely to be reunited with that organ.”
Organizations such as LifeSource provide information and resources to help people make informed decisions about organ donation that are in keeping with their cultural values.
LifeSource has started a campaign in Minnesota, South Dakota and North Dakota funded by Minnesota Department of Health called Talk Donation in consultation with Native advisors in the area. The website presents stories of AI/AN community members who have been touched by organ donation in some way.
Patina Park, Cheyenne River Sioux, says in her story: “Learning that there are 62 Native Americans [in Minnesota] waiting for a tissue or transplant of some sort makes me want to get tested and see if I’d be a match if they are needing something from a living donor. It also really emphasizes the need to have these conversations throughout our community. I know there are some spiritual beliefs where the body needs to remain whole and I respect that completely, but for those who don’t share those beliefs or would consider being a donor it’s something that I don’t think we talk about enough. It’s something that we should discuss with both our young and our elders so that those 62 people can meet and find a match and continue living.”
Conversations with family members are critical, said Lindsey Williams, Turtle Mountain Band of Chippewa, who is the community education liaison for LifeSource. “It’s important that everybody be on the same page and know what their loved ones wanted.”
Williams explained that anyone can register as a donor, whatever their age, health status or use of substances such as tobacco, alcohol or drugs. “People often come from a place of wanting to protect others,” she said, “but medical experts do an assessment of what can be safely transplanted.”
She urged people to register and talk with their families. People may register to be a donor at the U.S. Department of Health and Human Services organ donor website or through their state department of motor vehicles. The registration can be rescinded at any time if the person changes his or her mind.
WIlkie said, “We have such unique DNA that the odds of us matching a non-Native person [to receive an organ donation] are almost impossible.”