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.
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.
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.