Highlighting Mental Health Disparities in Indigenous Communities Affected by Huntington’s Disease

• Trigger Warning (TW): This article discusses suicidal thoughts, suicide risk, and other serious aspects of mental health. If this topic is difficult for you, please consider reading with support. If you need immediate help, contact your local crisis service or emergency services. In the US and Canada, call or text 988.

Huntington’s disease (HD) has a profound effect not only on movement and memory, but on many aspects of mental health. One serious challenge that comes with HD is a raised risk of suicidal thoughts. A new study used one of the largest HD databases in the world to ask a question that is rarely examined: are suicidal thoughts reported at the same levels across all communities affected by HD? 

The researchers found that Indigenous North American participants with HD had more than twice the odds of reporting a history of suicidal thoughts compared with White non-Hispanic participants. Let’s talk about the findings and shine a light on rigorous research that is inclusive of communities marginalized by healthcare systems, and highlights the need for culturally grounded HD care.   

Suicide Risk in Huntington’s Disease

HD is a progressive genetic brain disease that affects movement, thinking, and mood. Alongside those better-known features, people with HD carry a higher risk of suicidal thoughts, and of dying by suicide, than the general population. “Suicidal ideation” is the clinical term for having thoughts about suicide. It is a serious behavioral health concern in HD.

This risk is often highest in the early and middle stages of the disease. These can be especially difficult years, when someone may be coming to terms with a diagnosis, noticing symptoms, or beginning to lose independence. The risk can be higher still when depression, anxiety, substance use, or other psychiatric symptoms are also present, and studies suggest that about 17% to 31% of HD patients have a history of suicidal thoughts.

A Gap in What We Know

Most of what has been written about HD describes White communities. But HD affects people across many racial and ethnic groups. How the disease burdens diverse communities has rarely been studied. Indigenous populations (a term used in this paper to describe the original occupants of North America and their descendants) in particular have been largely excluded from HD research. 

This matters for suicide risk in particular. Outside of HD, rates of suicidal thoughts and suicide vary among racial and ethnic groups, reflecting differences in historical, social, economic, and healthcare conditions. Yet earlier HD studies of suicidal thoughts did not examine these patterns. A recent study by Yvette Brown-Shirley, Allanceson Smith, and Adys Mendizabal, two of whom self-identify as members of Indigenous communities, set out to begin filling that gap. This type of research is known as epidemiology – the study of how diseases affect different groups of people. Understanding these patterns helps researchers identify health disparities and improve care for everyone. 

Navigating Racial Identity in Enroll-HD

The researchers drew on Enroll-HD, a global study that follows people with or at risk of HD over time. Participants return to the clinic each year, and the platform has gathered clinical assessments and biosamples from more than 20,000 people worldwide. The team used the publicly available 2020 version of the dataset and focused on North America, where data came from 51 study sites in the US and six in Canada.

This was a snapshot study, looking at one point in time rather than following people across many years. From the data, the researchers identified 4,717 participants who were genetically confirmed to carry the HD expansion. Of those 4,717 participants, 53 identified as Indigenous North American.

It’s worth noting that the researchers had to work within the framework that Enroll-HD uses to record race and ethnicity, for which the terminology is not always aligned with people’s racial identity. The category called “Other” can include, for example, individuals who identify as Native Hawaiian, Other Pacific Islander, or Alaska Native/Inuit (among many others).  The 53 participants in the Indigenous North American group came only from the Enroll HD category “American Indian/Native American/Amerindian.” 

Asking Questions about Mental Health

The researchers then compared two kinds of information. First, they looked at HD related health measures, such as movement symptoms, disease stage, age at diagnosis, and whether someone had a history of thinking or memory difficulties. Second, they looked at social factors, including education, employment, and whether someone lived in a city, town, village, or rural area. 

Their main question was whether people in different racial and ethnic groups reported suicidal thoughts at different levels. They used specialized math to account for differences in things like age, sex, disease stage, education, job status, and geography. This helped them ask a more careful question: were suicidal thoughts still reported more often in one group after taking those other differences into account?

What the Researchers Found

The clearest finding was about suicidal thoughts. About 47% of Indigenous North American participants reported a history of suicidal thoughts. Sadly, this was much higher than the 28% seen across the full study group.

The same pattern held when the researchers compared Indigenous North American participants with White non-Hispanic participants. 

Looking at the raw numbers, the researchers calculated what’s known as an odds ratio, a statistical way of comparing how often something occurs in different groups. In this study, that meant comparing the number of people who reported suicidal thoughts with the number who did not. An odds ratio then compares that yes versus no balance between two groups.

Although the Indigenous North American group was relatively small, participants had a little more than twice the odds of reporting suicidal thoughts compared with the White non-Hispanic group.

The researchers then asked a second question: could this difference simply be because the groups were different in other ways? For example, what if one group was older, had more advanced HD, had more thinking or memory problems, or differed in education, employment, or where people lived? To check this, they used statistical models that included those factors. This is what researchers mean when they say they “adjusted” the analysis.

After that adjustment, the result stayed very similar. Indigenous North American participants still had about 2.3 times the odds of reporting suicidal thoughts compared with White non-Hispanic participants.

This adjustment is important because if the higher rate of suicidal thoughts among Indigenous North American participants had simply come from having more advanced HD, or more memory and thinking problems, or fewer years of education, then accounting for those things would have made the gap shrink or disappear. It did not. The difference remained even after the researchers accounted for the clinical and social factors that Enroll-HD could measure.

That suggests the explanation may lie, at least in part, outside HD. It may be found in the broader realities of people’s lives, including the pressures, barriers, and inequities that a dataset like this can only partly capture. 

Looking Beyond the Disease Itself

So what might help explain the difference? The authors point to what researchers call the social and structural determinants of health. These are the conditions that shape people’s lives long before they enter a clinic, including where they live, whether care is nearby and accessible, whether that care feels safe and culturally appropriate, and what kinds of economic and social pressures they face.

This finding also sits within a much wider pattern that is hard to ignore. In both the United States and Canada, and far beyond Huntington’s disease, Indigenous communities have faced higher rates of suicide and suicidal thoughts than the general population. 

The authors are careful to place these findings in context. These disparities did not come from nowhere. They are tied to generations of harm, including colonization, forced assimilation, the suppression of Indigenous languages and cultures, removal from ancestral lands, systemic discrimination, economic hardship, and limited access to mental health care that is culturally grounded and trusted. These histories, and their ongoing effects, shape health in ways that no clinic score or genetic test can fully capture.

For the HD community, the message is important. A person’s risk cannot be understood from a genetic test, a motor score, or a clinic visit alone. Huntington’s disease matters, but so do the conditions surrounding a person’s life.

A Step Toward Closing the Gap

It is a difficult finding, and worth stating plainly. Close to half of the Indigenous North American participants, about 47%, reported a history of suicidal thoughts, against 28% across the study as a whole. Set beside White non-Hispanic participants, that came to roughly 2.3 times the odds, a gap that held even after the researchers adjusted for clinical and social differences. Behind each of those numbers is a person, and a family, living with HD. But naming a problem clearly is the first step toward acting on it, and these results point to real things that can be done, above all for the patients who carry the greatest burden.

Some of those steps are clinical. The authors call for routine screening for suicidal thoughts and depression in every HD patient, with particular attention to Indigenous communities. They also note that medications called VMAT2 inhibitors, which are used  for controlling HD movements (choreachorea Involuntary, irregular ‘fidgety’ movements that are common in HD), carry a boxed warning about an increased risk of depression and suicidality, so clinicians may consider alternative choreachorea Involuntary, irregular ‘fidgety’ movements that are common in HD medications. 

Just as important is how care is delivered. The authors argue that good care should extend beyond Western clinical practices to include approaches that are culturally grounded and rooted in community. They point to a suicide-risk screening tool built specifically for Indigenous communities. 

For a long time, Indigenous communities have been nearly invisible in HD research, and this study begins to change that. The way forward is practical: reaching more people beyond big-city specialty centers, building partnerships grounded in trust, and studying the strengths that already exist in these communities. This study offers a clearer picture and a path forward. By naming these disparities and working with Indigenous communities affected by HD, researchers and clinicians can begin to close a gap that has been overlooked for too long.

Limitations and Takeaways

This study is an important first look, and the authors are honest about what it cannot tell us. The number of Indigenous participants was small, just 53, which makes it hard to draw broad conclusions, especially across peoples who differ so much from one another. There is also a question of who takes part. In the US, Enroll-HD runs mostly at academic specialty centers in large cities, and many people who live elsewhere are likely missed. As a result, the study probably underestimates both how common HD is in Indigenous communities and the true weight of suicidal thoughts among Indigenous people affected by HD.

A few other gaps are worth naming. The researchers could not separate the US from Canadian participants, even though the two countries have very different healthcare systems. The dataset does not capture household income or insurance. It also could not tell them about other mental health conditions, about stressful life events, or about when in someone’s experience of HD these thoughts occurred. And the way race and ethnicity are recorded does not fully reflect people who identify with more than one group.

Despite these caveats, this HD study is notable for more than its findings. The authors include a land acknowledgement, explain the terminology they use for Indigenous communities, and place their results within the broader historical and social context that shapes health. That perspective is still uncommon in scientific papers, but it helps paint a more complete picture of the people behind the data.

Finally, there is room for measured hope in these findings. Because the raised risk appears to be shaped by social conditions rather than by the disease, it is the kind of risk that can be changed.

Summary

• An epidemiology study examined racial and ethnic disparities in mental health among people with Huntington’s disease.
• About 47% of Indigenous North American participants reported a history of suicidal thoughts, compared with 28% of participants overall.
• Indigenous North American participants had more than twice the odds of reporting suicidal thoughts compared with White non-Hispanic participants, even after researchers accounted for clinical and social differences.
• The findings suggest that HD alone cannot explain this disparity; historical, social, and healthcare inequities also shape suicide risk.
• The study included only 53 Indigenous participants, highlighting both the need for more inclusive research and the limitations of drawing broad conclusions.
• Culturally grounded care, trusted community partnerships, and better access to HD services could help close this gap.