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Former Havasupai vice chairman Rex Tilousi and his wife, Rosella. After seeing his own family ravaged by diabetes, Rex helped convince tribal members to participate in ASU’s study of the disease. But, he says, ASU officials lied to his face about how the blood was being used. Rosella now is in a wheelchair because diabetes has cost her a leg. (Photos  by Jason Millstein/iLLume Photography)

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Aral Putesoy Kaska knows all about the Arizona State University research project on diabetes.

She remembers the debate among the tribe, the reluctance, the questions of trust. But in the end, she gave her blood, convinced by her Havasupai Tribal Council that scientists in Tempe could find answers to stop the disease from spreading to her daughters and the grandchildren she hoped one day to have.

She also was one of 10 tribal women who studied nutrition at ASU in the summer of 1990, hoping a better diet could help stem the epidemic that affects half the women in the tribe and 45 percent of the men – the third highest diabetes rate in the world.

It never occurred to her – and she wouldn’t know for 13 years – that the blood of an isolated group of Native Americans, among the oldest blood on the continent, would be considered so rare it would be a “gold mine” to scientists – not to study diabetes, but to study mental illness, inbreeding and Indian migration patterns, studies that assaulted both her culture and her religion. On top of that, she and the tribe discovered they were never going to get the precious answers they sought, because in all those years, ASU had not done the genetic diabetic research it promised.

These days, Aral works in the only restaurant in Supai, the Havasupai village at the bottom of the Grand Canyon that was flooded and evacuated last summer. Her diabetes is worse than ever. Her daughters have it, and she expects her grandchildren to get it. Whenever she needs medical help, she either hikes or helicopters out of the canyon to seek care in Tuba City. She won’t go to the Indian Health Service clinic in the village anymore. That’s where they took vile after vile of her blood.

She explains all this as she sits in her brother’s tribal office – Matthew Putesoy is vice chairman of the tribe – and talks about what became known as the Medical Genetics Project at Havasupai. Her body language is sometimes sad – head down, shoulders slumped – and sometimes angry, with her head held defiantly high, shoulders squared.

If she knew then what she knows now, she says she never would have allowed them to take her blood. “They lied to me,” she says. “I trusted them, and that was broken.”

She’s asked what she would tell ASU President Michael Crow or the Arizona Board of Regents if they were sitting in front of her now. She hesitates for a long time. “I can’t even say it in English,” she finally says. It’s suggested she use her native language and let her brother translate.

Here’s what she says in Havasupai: “You’ve hurt us so bad that we feel like we don’t trust anyone anymore. We don’t want anything to do with the university anymore. We hate you all.”

As Matthew translates the words into English, Aral’s eyes well up, and she hastily excuses herself before she breaks down. “She’s expressing the sentiment of the tribe,” he says as his sister rushes out.

Aral isn’t the only one who has cried over this research project, which the small tribe calls a “severe, gross human rights violation against an entire Indian community.”

It happens even with those you’d never expect, like Dennie Wescogame, a broad-shouldered, husky man who works with his hands and looks you straight in the eyes as he talks. He not only gave his blood for the project but worked in the Supai clinic, helping ASU researchers and students collect blood from most of the adults in the tribe.

“I wanted to better the tribe,” he explains. “Then I found they were using our blood for all these different things. To me, personally, it was raping me of my blood. It was using my blood for their own goals. They’re taking a part of my soul away from me. I feel stabbed in the back because I took blood from my own people for them.”

And then the tears come. Most men, when they cry, hide their faces or furtively wipe away the tears, but 45-year-old Dennie doesn’t do any of that. He continues talking as tears well up in both eyes and trickle down along the creases of his face. He’s not ashamed that he’s crying, and it’s obvious this has happened many times before.

“I’m puzzled every day how this can be,” he says. “I can’t believe they don’t see what they did to us.”

The Havasupai say that what the ASU research project did to them was “genetic piracy,” defrauding and betraying them for personal and professional gain.

Specifically, they charge:
• They authorized the use of their blood for diabetic research only, and while some basic, routine testing was done, no significant genetic research on diabetes ever took place.
• Instead, their blood was used to study schizophrenia and the Bering Strait theory of Indian migration – a study that basically says Native Americans aren’t natives at all but rather immigrants from Asia who came across a land bridge.
• Another unauthorized study used their handprints to look for patterns of inbreeding.
• Although they’d been promised their blood would be kept “under lock and key” at ASU, it was sent to universities and private labs around the country.
• Their medical files at the Indian Health Service clinic in Supai were raided in the dead of night to look for signs of schizophrenia in specific people.

They say all of this has been disastrous for the tribe. Many tribal members now are “so distrustful” they refuse to seek any medical or diagnostic care, says Tribal Chairman Don E. Watahomigie.

“Today we have 20 people on dialysis for their diabetes because they wouldn’t seek help until it was too late,” he adds, noting this wasn’t happening in 1990 when the ASU study began. “We’re worse off than we were then.”