Harper Institute collecting Native American samples to address health disparities
Dr. Gerald Morris, the medical director for the Pokagon Band of Potawatomi Indians that live in northern Indiana and southwest Michigan, isn’t certain that the Native American patients he sees show higher rates of cancer than the rest of the population — though he suspects it.
“The one thing that stands out to me is, oftentimes, they’re more advanced when we find them,” said Morris, who is a Pokagon citizen. “I think they have the same issues as other patients in terms of the types of cancers. It’s just that they tend to be more advanced when I do see them.”
Morris said the reason the cancers are more advanced could trace back to historical access to health care, which leads to lower rates of cancer screening. He hopes that a partnership being developed between the Pokagon Band and the University of Notre Dame's Harper Cancer Research Institute (HCRI) will help raise awareness of the importance of screening and early detection to address measurable disparities in cancer treatment outcomes involving Native Americans.
The Pokagon Band’s tribal leadership plans to invest $25,000 to help fund the project. Scott Brewer, a senior vice president at the tribe’s Four Winds Casino Resorts, oversees the company’s philanthropic activities and proposed the HCRI project to his tribal council. He said the research disparities Harper presented speak for themselves — of about 90,000 cancer tissue samples in the Cancer Genome Atlas at the National Cancer Institute, only 114 came from Native Americans.
That’s .001 percent of the total, even though people identifying as at least partially American Indian or Alaska Native constitute about 3 percent of U.S. population.
“We’ve partnered with the University on several things, but this is the first health initiative,” Brewer said. “It was the easiest sell for me because it’s research to try to get a cure, and the research is specific to Native Americans.”
The project aims to double the number of cancer tissue samples that come from Native Americans through several outreach efforts. While Harper is in the early stages of relationship building with the Pokagon Band, it has been working for a few years with other minority groups: the Kalispel tribe in eastern Washington state, and medical groups in Puebla, Mexico.
Andy Bullock, associate director of HCRI, explained why it’s so important to diversify the cancer tissue samples available for research. His rationale starts with the direction the future of cancer research is taking.
“Cancer is not one disease, it’s thousands,” Bullock said. “It used to be cancer of the breast, colon, kidney, etc. With more personalized medicine, it’s now more about the type of mutation.”
Cancer comes from a mutation in a person’s DNA, leading cells to grow uncontrollably in different ways. Targeted cancer drugs and chemotherapy attempt to block different pathways that are turned on by these mutations in the body. But people of different race or ethnicity with the same cancer might have different mutations that activate the cancer-driving pathway.
“It might be different between a Caucasian person and Native American person and African American person,” said M. Sharon Stack, the Anne F. Dunne and Elizabeth Riley Director of HCRI. “We don't know for most cancers in minority populations because nobody’s really looked.”
Most cancer tissue is collected at elite cancer centers, where there is an over-representation of white patients that can afford treatment there. Minority cancer patients are more likely to seek treatment at local, often less-costly cancer centers. These trends drive the disparity that leads to such low numbers of Native Americans in the Cancer Genome Atlas.
“The current model is — we come up with a drug that helps white people, then hope it helps other people too,” Bullock said. “We are trying to invert that model. We want to research Native Americans and see how well those pathway blockers help them and other people.”
Stack said the project fits the University’s mission of serving populations often marginalized in the past, but it’s also a “really compelling scientific question.”
A 2022 American Cancer Society report on American Indian and Native Alaskan populations found that cancer incidence in these indigenous communities is higher nationally than among whites, especially for lung, colorectal and kidney cancers. The report notes that lower levels of health insurance and chronic underfunding of the U.S. Indian Health Services exacerbates the problem.
Within the national numbers are wide variations, partly because there are 574 federally recognized tribes and more than 200 that remain unrecognized. Even when factors like health care and poor housing are equalized, wide disparities in cancer cases remain. For instance, Northern Plains Indians are four times more likely to have kidney cancer than whites. Survivability charts also show disparities, likely due to later detection.
Bullock said HCRI has been working for several years with partners in eastern Washington because an alumnus there donated money for cancer research. Ryan Gee, who graduated in 1998, is CEO of Gee Automotive companies with 35 car dealerships across several western states.
Gee, whose wife survived cancer, said the fight against the disease is his side passion. He co-founded the Community Cancer Fund with a friend who survived cancer against great odds. The organization raises money for cancer research and to help families in the Northwest cope with the severe economic impact of cancer treatment.
The Kalispel Indian tribe is a large donor to the fund, so Gee asked Harper about cancer research among Native Americans and learned it was lacking. “What if we set a goal to double the amount of Native American research samples in the database through Harper at Notre Dame,” Gee said.
Gee’s nonprofit works with the MultiCare hospital system in Washington state, which has helped Harper collect about 20 cancer tissue samples from Native Americans so far.
“Native American populations experience much higher cancer rates than non-Hispanic white people in the U.S and are historically under-represented and critically under researched,” said Annie Reedy, MultiCare’s chief research and education officer. “Through this collaboration with Notre Dame we are moving toward a greater understanding of cancers in Native Americans and building a foundation for future clinical trials and treatment advances for this population.”
Fundraising is an important part of this research because the cancer tissues are expensive to analyze. When a lump or tumor is removed from a patient, the doctors will perform a biopsy on a small slice to determine if it’s cancerous. The rest is considered medical waste.
Stack said it can be difficult to convince people to share the leftover portions with tissue banks, especially if the target population is mistrustful of the medical community. Relationship building can take years. A tissue bank must strip out identifying information that could lead back to the donor, leaving only basic demographic information.
Harper contracts with a Chicago company that extracts DNA from samples and looks for about 600 mutations linked to cancer. The $2,500 process also analyzes the RNA sequence, which is a blueprint of the DNA’s genetic code that gets made into the proteins that form hair and skin and bones – the different parts of the body. Men’s basketball coach Mike Brey raised money for the project through his Coaches vs. Cancer work.
Another branch of this ongoing project works with partners in Puebla, Mexico. There is a huge disparity in childhood leukemia survival between people in America and Mexico. In America, more than 90 percent of leukemia patients live to the 10-year marker that signals successful treatment. In Mexico, only about 60 percent live for four years.
HCRI has been collecting samples from pediatric patients in South Bend to compare them with samples from Mexican patients.
“Ideally we would have Caucasian kids and also kids of Latin American origin that happened to be raised in South Bend to see if any differences are genetic, or if it could be an environmental effect,” Stack said.
Maria Cristina Miranda Vergara earned a doctoral degree in biochemistry from Notre Dame in May. As a student, she studied biomarkers that could improve early cancer detection, working with partners at the Catholic Universidad Popular Autónoma del Estado de Puebla. Now working in biochemical research in Puebla, Miranda Vergara helps process Mexican samples using the same protocols so that the data can be compared to Notre Dame’s research.
“My dream is to develop some sort of microfluidic device that would allow us to detect cancer biomarkers in the field, so we could do early diagnosis of children in their communities,” she said. “It’s difficult to determine the symptoms of cancer, but we need to improve early detection to get the right treatment and improve outcomes.”
The common thread between the Harper projects in Mexican and Native American communities is to improve cancer survival by analyzing distinct populations that have not been studied as thoroughly in the past.
Priscilla Gatties, director of Health Services for the Pokagon Band, said Harper’s research can help address disadvantages that Native American communities have developed due to a lack of historical health data. She said her mother-in-law, a Pokagon citizen, is fighting against kidney cancer using medication that didn’t exist a decade ago.
“From my perspective, I’m very excited about what Harper is doing,” Gatties said. “There’s a lot of new research and information, and we can be a part of that. I think that’s going to help patients and save lives, even if it’s later on down the road.”