VIDEO: Health disparities in Huntington's disease care, management

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Likely because of the significant neuropsych symptoms that are really common, unfortunately, in HD such as depression, irritability, anxiety and suicidality, I think Huntington’s disease has really remained in the shadows for many years. There’s been a stigma surrounding HD historically and therefore, a number of individuals with HD never seek care. We know that of course, the average age of onset of symptoms for most individuals is in the fourth decade, kind of the prime of their life. Therefore, folks struggle with maintaining employment, which leads to significant socioeconomic stressors and which, unfortunately, contributes to another kind of barrier to care and limited access to care. HD is a relatively rare disease; we think that there are roughly 41,000 individuals in the U.S. living with HD but over 250,000 individuals at risk. This can leave individuals feeling isolated and alone. We probably have an inadequate number of HD experts, and this can also hinder, I think, access to HD-specific care and treatment options. Importantly also, the diagnosis has historically been based on the motor symptoms, more specifically the chorea. However, we know that the non-motor symptoms, the cognitive symptoms, the psychiatric symptoms can occur at least a decade before individuals have significant problematic chorea and these non-motor symptoms can be incredibly disabling and lead to broken relationships, job loss, unemployment and possibly even for some, wrongful incarceration. The diagnostic criteria are evolving and there are efforts underway to potentially modify the diagnostic criteria and really make a clinical diagnosis earlier rather than later so that we can effectively address and treat symptoms, acknowledge symptoms earlier rather than later. But even without confirmed revised diagnostic criteria, I think it’s just important that we continue to raise awareness, that we continue to have these conversations, these discussions about the significance of the psychiatric symptoms and the cognitive symptoms that may be apparent and problematic prior to significant motor symptoms.