When a medical resident came to Benjamin D. Hoffman, M.D., FAAP, in 2012 with concerns about an 18-month-old Navajo patient who was having muscle and motor difficulties, his heart sank, knowing the likely diagnosis.
The toddler had metachromatic leukodystrophy, a neurodegenerative disease that typically is fatal in the first five years. In the general population, the disease affects about one in 40,000 people. However, on the western Navajo reservation, it’s about one in 3,000, according to Dr. Hoffman who started his medical career on the Navajo Nation and now serves as AAP president.
It’s one of the many health disparities that persist following centuries of oppression. Dr. Hoffman and other experts detailed that history and its impact on child health during an AAP-sponsored panel discussion at the Pediatric Academic Societies meeting in Toronto in May. They also discussed how pediatricians can take action.
“We’re going to tell you it’s bad. It’s really bad,” Dr. Hoffman said. “But there’s hope. There’s hope on the horizon. The road is long. It’s going to be hard, but we can achieve reconciliation through resilience, through the spirit, the strength, the traditions of the communities on Indigenous land and in urban Indigenous communities.”
History of oppression, ongoing health impacts
Both the U.S. and Canada have long histories of forcibly removing Indigenous groups from their land, sending them on deadly cross-country journeys far from their homes and attempting to strip them of their culture and traditions.
To try to assimilate children, they opened residential schools that were notorious for abuse and neglect. The National Centre for Truth and Reconciliation has documented more than 4,000 deaths at these schools in Canada.
“Residential schools were a form of genocide,” said Ryan Giroux, M.D., FRCPC, a general pediatrician at St. Michael’s Hospital in Toronto. “Residential schools leave a legacy of physical, emotional abuse, neglect and sexual abuse as well.”
The impact of the cruelty and trauma on Indigenous communities continues to be felt generations later, according to Dr. Giroux, whose heritage includes the Indigenous group Métis, and fellow panelist Kenna K. Sheak, M.D., pediatric hospitalist at Cincinnati Children’s, whose heritage includes Muscogee and Cherokee.
In the U.S., about 25% of American Indian and Alaska Native (AI/AN) families live in poverty, compared to 11.5% of the general population, according to U.S. Census Bureau data. In addition, a U.S. Water Alliance report found Native American households are 19 times more likely to lack indoor plumbing compared to white households. The mortality rate for AI/AN infants is 7.5 per 1,000 live births compared to 5.4 per 1,000 live births in the general population, according to the Centers for Disease Control and Prevention.
These inequities are similar in Canada. Indigenous children in both countries also have higher rates of abuse, foster care placement and unintentional injuries. In addition, Indigenous communities have high rates of chronic liver disease, cirrhosis, diabetes, substance use, mental health issues, criminal victimization and self-harm.
Experts called on clinicians to be prepared to treat Indigenous patients, who comprise about 3% of the U.S. population and 5% of Canada’s population. More than half live in urban areas.
Often, pediatricians are caring for children, especially in larger cities, but are not aware that they are from Indigenous communities, Dr. Sheak said.
“Unless you ask,” Dr. Giroux added.
Allyship and action steps
Shazeen Suleman, M.D., M.P.H., FAAP, clinical associate professor at Stanford University School of Medicine in California, acknowledged the statistics are grim, but said pediatricians can be allies for Indigenous communities.
“It is a big mountain that we have to climb to repair the damage from colonialism,” she said. “And sometimes we can feel so overwhelmed with the shame and not even knowing where to start.”
Dr. Suleman, who is not Indigenous but works closely with Indigenous patients, provided some suggestions, including creating caring clinical environments that acknowledge the trauma Indigenous people have experienced and reducing barriers to care by offering flexible appointment times and accepting patients who are uninsured or underinsured. Clinicians should strive to provide high-quality Indigenous interpreters, ensure families can participate fully in decision-making and create safe, welcoming spaces.
“We are going to treat everybody as if they have had that terrible experience and come with warmth and kindness and authenticity,” she said.
She also called for people to educate themselves and others. When scholars perform research, they should include the lived experience of Indigenous communities and do so in a way that uplifts these groups. They should be included as full partners in every step of the process.
Clinicians also can advocate with Indigenous communities at all levels of government. A good place to start is the Truth and Reconciliation Commission of Canada’s calls to action, which are intended to address the impact of residential schools. They cover child welfare, education, language, culture, health and justice.
“Things we do, structures that we set into place, systems that we operationalize that cause oppression and marginalization and inequities and injustice are things we create, and they’re also things we can fix,” Dr. Hoffman said.
The AAP has been working with the Indian Health Service since the 1960s and in 1964 created the AAP Committee on Native American Child Health, which works to promote the physical, mental and social health of AI/AN children. In 2021, it released the policy Caring for American Indian and Alaska Native Children and Adolescents to provide guidance for pediatricians. AAP CEO/Executive Vice President Mark Del Monte, J.D., pledged the organization’s continued support.
“Though the American Indian and Alaska Native population is often overlooked in medicine, in public health research and academia, the AAP is firmly committed to its children,” he said.
Additional coverage of the 2024 PAS meeting
