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Walking Forward: Working to Move the Needle in Cervical Cancer Among American Indians in the Northern Plains | Keely Ulmer, MD

DiversityHealth EquityInclusion & Health Equity
Sep 18, 2024

Keely Ulmer, MD

As a Native American born and raised on the Pine Ridge Reservation of South Dakota, I have personal experience as an underserved and underrepresented minority in the United States. I have experienced limited access to care, transportation difficulties, socioeconomic burdens, and cultural boundaries to health care experienced by rural Native American populations. The Northern Plains has a vast and almost exclusively rural land area with a dense population of American Indian (AI) people. Like other rural communities, there is minimal sub-specialty care, including gynecologic oncology.

The disparate care is magnified in the unrelenting problem of cervical cancer among the AI communities. AI in the Northern Plains specifically have been shown to have two times the incidence and up to four times the mortality from cervical cancer.1,2 There are numerous reasons for this disparity: higher rates of high-risk HPV types that are not covered by vaccines,3,4 persistent HPV infections, lower prevalence of screening and vaccination,5 poor follow-up, AI patients presenting at later stage,1 AI patients being less likely to receive guideline-concordant care,6 and a broken and underfunded government operated healthcare system (Indian Health Service (IHS)).7,8,9 Furthermore, these problems have occurred within the broader context of generational trauma and systemic oppression that continues to this day. The path to overcoming these daunting challenges within my community can seem insurmountable. However, I remain hopeful, as community-based programs are now fighting to address these issues. One program that I would like to share with our society is Walking Forward.

Walking Forward is an NCI-funded program in South Dakota that has operated for over 22 years.10,11 Walking Forward represents a true community-based partnership with both urban and rural AI, as well as AI tribes in the area, to increase screening and follow-up for many cancer types (e.g. lung, breast, cervical, colorectal). This program works with and functions within the AI community to facilitate screening events and provide education. A backbone of this program is patient navigation to follow up on abnormal results and expedite referrals while focusing on challenges faced by our AI communities, such as mistrust of the medical system and being lost to follow-up. This program has provided longstanding providers and patient advocates, which is paramount for the AI community.

I believe that community-based, culturally competent programs such as Walking Forward, tribally led healthcare, and increased representation of AI in medicine will help address cervical cancer in the Northern Plains and nationwide. As a gynecologic oncologist returning to serve my community in Rapid City, SD, in September 2025, I strive to continue to promote programs like Walking Forward by increasing public awareness, advocating for increased funding, and striving for sustainable solutions in my community. I dream of successful programs like Walking Forward to serve as a model for underserved and underrepresented communities like my own.

 

References

1. Melkonian SC, Chen L, Jim MA, et al. Disparities in incidence and trends of colorectal, lung, female breast, and cervical cancers among non-Hispanic American Indian and Alaska Native people, 1999–2018. Cancer Causes & Control 2023;1-14

2. Melkonian SC, Jim MA, Haverkamp D, et al. Disparities in Cancer Incidence and Trends among American Indians and Alaska Natives in the United States, 2010-2015. Cancer Epidemiol Biomarkers Prev 2019;28(10):1604-1611, doi:10.1158/1055-9965.Epi-19-0288

3. Lee NR, Winer RL, Cherne S, et al. Human papillomavirus prevalence among American Indian women of the Great Plains. The Journal of Infectious Diseases 2019;219(6):908-915

4. Schmidt-Grimminger DC, Bell MC, Muller CJ, et al. HPV infection among rural American Indian women and urban white women in South Dakota: an HPV prevalence study. BMC Infect Dis 2011;11(252, doi:10.1186/1471-2334-11-252

5. Kratzer TB, Jemal A, Miller KD, et al. Cancer statistics for American Indian and Alaska Native individuals, 2022: Including increasing disparities in early onset colorectal cancer. CA Cancer J Clin 2022, doi:10.3322/caac.21757

6. DiSilvestro JB, Ulmer KK, Hedges M, et al. Cervical Cancer: Preventable Deaths Among American Indian/Alaska Native Communities. Obstetrics and Gynecology Clinics 2024;51(1):125-141

7. Warne D. The state of Indigenous America series: ten Indian health policy challenges for the new administration in 2009. Wicazo Sa Review 2009;24(1):7-23

8. Kruse G, Lopez-Carmen VA, Jensen A, et al. The Indian health service and American Indian/Alaska native health outcomes. Annual Review of Public Health 2022;43(559-576

9. Lofthouse J. Increasing funding for the Indian Health Service to improve Native American health outcomes. Mercatus Policy Brief Series 2022;

10. Petereit DG, Guadagnolo BA, Wong R, Coleman CN, “Addressing Cancer Disparities Among American Indians Through Innovative Technologies and Patient Navigation: The Walking Forward Experience,” Frontiers in Radiation Oncology, 1(11), June 22, 2011, 1-9 (PMCID3355933)

11. Dignan M, Cina K, Sargent M, O’Connor M, Tobacco R, Burhansstipanov L, Ahamed S, White D, Petereit DG, “Increasing Lung Cancer Screening for High-Risk Smokers in a Frontier Population” J Cancer Educ. 2024 PMID: 37688691

 

Keely Ulmer, MD, is a citizen of the Oglala Lakota Sioux Nation and was raised on the Pine Ridge Indian Reservation. She is a third-year gynecologic oncology fellow at the University of Iowa. She will return to western South Dakota upon graduation to work as a gynecologic oncologist in Rapid City. Her research passion is American Indian health disparities, including gynecologic cancers. She plans to continue her research with the Walking Forward program in her communities in the Northern Plains.