Breaking Barriers: Ensuring Equitable Care for Asian Americans Living with Parkinson’s Disease

Parkinson’s disease (PD) is a complex and progressive neurodegenerative disorder that affects nearly one million people in the United States. However, despite the availability of treatments that can manage symptoms and improve quality of life, Asian Americans living with Parkinson’s often face significant barriers to accessing the care they need.

Cultural and Language Barriers

One of the primary challenges Asian Americans encounter is the cultural stigma surrounding illness and aging. In many Asian cultures, there is a strong emphasis on maintaining family privacy, which can lead to hesitation in discussing health issues openly. This cultural norm can prevent individuals from seeking medical help early, often delaying diagnosis and treatment. Additionally, language barriers can further complicate the situation. While most hospitals offer translation services, the quality of these services varies, and digital translations may not capture the nuances of medical terminology. This can result in miscommunication and misunderstanding between patients and healthcare providers.

The Reluctance to Speak Up

Many Asian Americans also experience a reluctance to question or challenge their doctors, driven by a desire to be perceived as “good patients.” This cultural inclination can lead to underreporting of symptoms or side effects, which are crucial for effective disease management. As a result, patients may not receive the full spectrum of care available to them, further exacerbating the progression of the disease.

Underrepresentation in Research

Another significant barrier is the underrepresentation of Asian Americans in Parkinson’s disease research. Despite the high prevalence of Parkinson’s, Asian Americans have been largely excluded from clinical studies, which means that the unique challenges they face are not adequately addressed. This lack of representation contributes to a knowledge gap that can delay diagnosis and result in less effective care for Asian American patients.
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Addressing the Gaps: The ACCESS-PD Initiative

To tackle these challenges, Tufts University and Asian Women for Health launched the ACCESS-PD (Advancing Comprehensive Care & Enhancing Service Standards in Parkinson’s Disease among Asian Americans) study in 2022. Funded by the Michael J. Fox Foundation, this groundbreaking initiative aims to identify and address the cultural and systemic barriers that prevent Asian Americans from accessing the care they need.

The study is recruiting family care partners to participate in a national online survey that explores their experiences with diagnosis, treatment, and caregiving. The goal is to gather insights that will inform the development of culturally appropriate resources and care strategies tailored to the needs of the Asian American community.

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Building a Better Future

As we continue to learn more about the unique challenges faced by Asian Americans with Parkinson’s, it’s clear that addressing these barriers is not just about improving individual outcomes—it’s about fostering a healthcare system that is equitable and inclusive for all! 

A news story that delves deeper into the experiences and challenges of individuals living with PD, based on the responses through the study will appear next week in SAMPAN newspaper. Stay Tuned for more updates! 

For more information on how to participate in the ACCESS-PD study, visit asianwomenforhealth.org/accessPD.  Together, we can make a difference! ​