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A spiritual sacrifice? Lakota culture's view of organ donation is focus of SDSU Study and 
Condensed by Native Village

South Dakota: Jerry Clown is a member of the Cheyenne River Sioux Tribe. In 2001, Clown was diagnosed with Wegener’s granulomatosis. The rare autoimmune disease triggered the onset of diabetes.  In 2008, his kidneys failed.

Clown has received chemotherapy for 12 years, and has been on dialysis for five. He is waiting for a kidney on an Avera transplant list. Despite his condition, Jerry avoids asking friends and family to consider donating a kidney.

“It’s really hard for me to ask someone to be a donor, because it’s a big sacrifice that they have to give up,” he said.

It’s also difficult because in many Native American circles, donating an organ is not only a physical sacrifice, but a spiritual one as well.

Nancy Fahrenwald
is an associate professor in the College of Nursing at South Dakota State University. Since 2003, she and her team of researchers, tribal elders, and healthcare professionals have collected information from Native dialysis patients and provided educational materials about living kidney donation.

She also focuses on how to have organ donation conversations with family members.

“There are many people on dialysis who could still benefit from a transplant who have never talked to their family about considering being a living donor, or even about the possibility of getting a donor,” Fahrenwald said.

Karla Abbot, a nursing professor at Augustana College, is a member of the Cheyenne River Sioux and part of Fahrenwald’s research team. She sees her people's declining health from the viewpoint of a healthcare professional.

“Culturally, Native Americans believe that when we leave this life and go onto the next, we need to have everything with us,” Abbott said. “But with the increase in Native American health disparities – kidney disease, obesity, renal disease, and hypertension – we’re going to need more organ and tissue donators.”

Of the 112,000 people on organ transplant lists, a disproportionate number are Native Americans. Chronic kidney disease is a major health problem in Native American communities. Compared to the white population, Native Americans are 2.8 times more likely to experience End Stage Renal Disease related to diabetes.

“Some of this is due to genetics, but a lot of it is change in lifestyle,” Abbott said. “Colonization changed our whole way of life. We were a people that lived by the water. We were very active. But all of those [environmental] changes have really led to our health demise.”

Fahrenwald's team consulted traditional healers who acknowledge that diseases leading to kidney failure are very real in their communities. They conclude that through prayer and ceremony, the spirits of the people who chose to donate or receive an organ could be at rest.

Abbott says that traditional stories also encourage people to help each other through the Lakota virtue of generosity. In the old days, one’s place in society was not based on what you owned, but by what you gave away.

“For a successful organ donation, you have to have a good match,” Abbott said. “In order for Native Americans to have successful kidney transplants, you need Native Americans donating organs and getting tested. This isn’t just limited to kidneys, but renal disease is our biggest problem by far.”

Fahrenwald is asking Native dialysis patients for their opinions about improving organ donation and what information they would find useful.

“It takes time to build relationships. I’m not a tribal member, but as a researcher, I need to honor tribal members’ time and not conduct research for the sake of research,” Fahrenwald said. “We need to conduct research that makes a difference for the tribe.”

So far, Farenwald's research is making a difference. A previous study with Native American college students resulted in 20% of them registering as organ donors.

Her research goal for 2013 is to bring resources to reservation dialysis centers that lack adequate patient and family education. Normally, patients like Jerry Clown must travel to large cities like Bismarck or Rapid City for that  information.

Clown hopes more education will help people understand the process of being a donor. Until then, he has yet to find a donor match.

“I would really appreciate if a lot of people were donors, because people that are on dialysis, they want to live longer and keep living,” Clown said. “There’s hope when someone says, ‘I would like to get tested, Jerry, what kind of blood type are you?’”

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