Latorius Adams works to educate communities and support patients with neurological diseases through the University of North Carolina Huntington Disease Program in Chapel Hill, N.C. Her work places her in the thick of rural communities where diseases like HD are often looked upon as mysterious and are feared, with symptoms commonly swept under the rug. She witnesses how these barriers to care affect treatment for African Americans and is on a mission to bring HD out into the light so that they may benefit from treatment.
“For the past three years, I’ve seen, firsthand, the unique challenges these communities face in accessing information and receiving diagnoses and support,” Latorius said. “Bringing HD to light within these groups is not just a matter of raising awareness; it’s about addressing systemic inequities and cultural nuances that impact healthcare access and perceptions of genetic diseases.”
Latorious says that in these rural communities, genetic disorders are often perceived as rare or primarily affecting white populations, leading to delayed diagnosis and misdiagnosis. This can be compounded by limited access to genetic counseling and testing services, often due to geographical barriers, financial constraints, and a general distrust of the medical system stemming from historical injustices.
This was particularly striking during a community outreach event Latorious attended, where she met individuals who saw symptoms of HD but thought it was St. Vitus’ dance (Sydenham’s chorea), a condition that can can have less serious repercussions.
“They made an assumption based on word-of-mouth that they had this other disease, which can go into long periods of remission, and therefore were unaware of the serious, degenerative implications of what they may have had instead — HD,” she said.
She sees similar cultural beliefs about HD in other communities as well, with stigma surrounding mental illness and neurological disorders leading to a reluctance to seek help or openly discuss symptoms. Furthermore, cultural emphasis on family privacy and a reliance on traditional healing practices can delay engagement with medical professionals.
“Our team recently met with a tribal community,” she said. “This meeting provided invaluable insights into Native American cultures and their perspectives on research, particularly concerning neurological disorders. Due to historical instances of unethical research practices conducted without informed consent, many Native American communities are wary of external researchers.”
Latorius says reciprocity is vital to starting to break through the mistrust.
“If we are asking them to come to us, we must first accept invitations to come into their community to establish trust and build collaborative relationships,” she said. “The tour of their tribal lands and the interactions with its members underscored the richness of their traditions and the deep respect we must have when engaging in research partnerships with Native American communities.”
Non-English speakers also face difficulties in understanding information about HD, genetic testing, and research studies. Cultural beliefs about health, illness and potential discrimination based on genetic testing can be a barrier to participation among non-English speaking populations. Latorius says translated materials and interpreters are essential, but not always available.
“One of the key strategies we employ is connecting families with literature that resonates with their experiences and backgrounds. For example, one book I frequently recommend is We Exist, by an African American woman who eloquently shares her personal journey with Huntington’s disease. This narrative not only provides insight into the realities of living with HD but also fosters a sense of community and understanding among African American families facing similar challenges,” Latorius said.
Collaboration with patient-facing nonprofit organizations like HD Reach is instrumental in bridging the gap between healthcare providers and affected families. Latorius finds the support they provide, including education days, monthly meetups, online support groups and resources, to be invaluable. Moreover, initiatives that offer logistical support, such as gas cards for transportation to clinics, alleviate some of the practical barriers that families face in seeking care.
“It’s clear that for research to advance and for families to receive the care they deserve, there must be a foundation of trust built through compassionate and equitable treatment,” Latorius said.
“As a case worker, I strive to create a safe and under-standing environment for patients and their families. This involves active listening, empathy, and a genuine effort to comprehend the unique cultural influences that shape their experiences with HD. Engaging community leaders and organizations in outreach can also help foster a more inclusive approach to education and resources.”