Brandie Taylor is watching her teenage son, Hunter Banegas, grow into a man. She is proud of his talent and his embrace of Kumeyaay Bird Singing, which is performed at traditional gatherings of their tribe, the Iipay Nation of Santa Ysabel, near San Diego, Calif.
But 13 years ago, a future filled with song—a future with Hunter—seemed doubtful. When Taylor was eight months pregnant with Hunter, she was hospitalized for sleeplessness, coughing, and fatigue. These symptoms were at first attributed to a complicated pregnancy, but they turned out to be warning signs of heart failure. Taylor was rushed into intensive care, where Hunter was delivered by emergency C-section. Hunter was born healthy, but it took years of treatment—including a heart transplant in 2008—for Taylor “to start feeling good again.”
Hers is not an uncommon story.
Heart disease, the leading cause of death for all American women, takes a disproportionately heavy toll on Native American women. American Indian and Alaska Native women die from it at a rate 20-30 percent higher than non-Native women, and Native Hawaiian women at a rate 100 percent higher.
Taylor, who is now the chairwoman of her tribe, shared her story last year at a forum sponsored by the National Heart, Lung, and Blood Institute (NHLBI) and WomenHeart: The National Coalition for Women with Heart Disease, with guidance from the Indian Health Service (IHS). As a WomenHeart Champion, Taylor is part of a nationwide network of trained community educators sharing information and experiences with women heart patients. This time, her story reached a new audience.
The Convening on Native American Women’s Heart Health, in December 2018, took place at the Smithsonian Institution’s National Museum of the American Indian, where Taylor and her son joined more than 40 other people—including Native American health experts and educators—to explore how to better prevent heart disease among Native American women and enhance support for those living with the disease.
Themes from the Convening
The day included presentations on prevalence and outcomes of heart disease in Native American women, panel discussions on evidence-based approaches to prevention and education, and small breakout sessions to discuss lessons learned and potential new approaches. A host of themes emerged that might help inform public health policy, community heart health programs, and medical and research protocols to ultimately reduce the high burden of heart disease Native American women.
- Looking to communities and culture to lead the way. The values and resources a community cherishes—its culture, its elders—can be as important to emerging heart programs as that community’s health data. That’s why many Native American communities are returning to traditional wisdom and practices in developing interventions that improve heart health. A research project investigating the cardiac benefits of traditional Native Hawaiian hula dancing was crafted with that idea in mind.
- Linking data to stories. The personal stories of Native American women living with heart disease can be a rich resource for those trying to shape effective prevention and treatment programs. Health workers and researchers must listen to these real-life stories, even deputize as “ambassadors” the women who tell them. In turn, these women can help reach others in the community and educate policymakers, too.
- Considering women in the context of family and community. Women are stewards of their own health and also play important roles in the health of their families and communities. Reaching out to those who are at-risk—directly and also indirectly through their personal relationships and service providers—can be highly effective. Likewise, enlisting help from women who hold traditional leadership roles, as they can help guide and implement heart health programs that work. This approach allows many voices to carry the same messages and spreads the responsibility to protect women’s health across the community.
- Treating pregnancy as a window of opportunity. Many Native American communities consider pregnancy a sacred time for passing traditional wisdom to the expectant parents. And because women may be more likely to make healthy lifestyle changes—more for their children than for themselves—this can be an ideal time to encourage women to improve their heart health. For expectant mothers, heart disease raises the risk not only of early disability and death, but of passing on risk factors to their children, including obesity and type 2 diabetes.
- Addressing adverse childhood experiences (ACE). Compared with other U.S. demographic groups, Native Americans have high rates of ACE, such as neglect, abuse, or parental incarceration. Because ACE has been linked to heart disease, addressing it at community and individual levels should be an early part of any intervention aimed at improving cardiovascular health in Native American women and girls. Some ACE trauma has its roots in historical abuses, and acknowledging this history is important to the success of health initiatives.
- Engaging young women and girls. Young people in Native American communities may see older family members struggle with heart disease in their 40s or even earlier. This can give them a sense of fatalism about their future health and well-being. Poverty and other ACEs may also lead young Native Americans to focus more on short-term survival than on long-term health. Interventions designed with and tailored to young women and girls can help shift their attitudes and behaviors toward wellness over the short and long term.
- Growing the Native American biomedical workforce. Efforts to address the disproportionate burden of heart disease in Native American women cannot succeed without providers, educators, and researchers who understand the culture and life experiences of these women. The NHLBI supports programs that provide training and development to Native American health scholars across the career spectrum, including the Programs to Increase Diversity Among Individuals Engaged in Health-Related Research (PRIDE) initiative and the Native American Summer Research Internship program.
- Redefining the “evidence” in evidence-based practice. Community tradition, history, and culture should be considered part of an evidence base that also includes clinical trial or observational study data. There is value in considering new kinds of evidence and outcomes measures (e.g., “How did that food make you feel?” in addition to “How many calories were in that food?”). Identifying ways of merging Native American traditional knowledge and other sources of knowledge, rather than viewing them as incompatible, has value, as well.
- Managing and translating research data. Sovereignty over clinical, genetic, and other biomedical data from research and public health surveillance is a top priority for Native American communities. It should be coupled with support from researchers and federal health agencies to analyze, interpret, and translate the data into clear, actionable terms for community leaders. Data ownership and translation can empower leaders to optimize health programs necessary for the women and men in their communities to thrive.
Defining the Vision
During her recovery from her 2008 transplant surgery, Brandie Taylor connected with a local WomenHeart support group, where she met women whose experiences closely reflected her own. “That’s what really saved me,” she says.
At the Convening, a different kind of relationship-building took place. Participants came together from diverse professions—including healthcare and health-related research, education, and policy. They shared their unique stories—from the perspective of clinician, scientist, educator, and patient. Collectively, more than one dozen indigenous tribes and cultures were represented. This rare gathering was a step toward a new collaborative vision toward heart disease research, intervention, and support programs geared to the unique challenges, needs, and strengths of Native American women. Participants were encouraged to take ideas that resonated with them back to their organizations and communities. Together, we will continue to work toward a heart-healthy future for Native American women.
Note: For simplicity, we use the term Native American to encompass the diverse peoples in American Indian, Alaska Native, and Native Hawaiian populations.