A Journey Shared by All
June 26, 2020
Over the past few weeks we have taken an inventory of ourselves, the organization, and our role in fighting racial injustice in our community. We want to share some information about institutionalized racism in the healthcare system, racial disparities within the national and statewide Parkinson’s community, and steps we plan to take as an organization to be more inclusive and representative of our whole community.
In early June, the Nebraska Douglas County Board of Health declared racism a public health crisis. Dr. Adi Pour, the Douglas County Health Director, said that “white people have a life expectancy of more than 10 years than African Americans” and that “7% of white people don’t have health insurance, while in African Americans it is 30%”. Even after accounting for health insurance and access to the healthcare system, disparities in care based on race still persist (Dahowala, N. & Parkinson’s Disease & Movement Disorders Center, 2013).
Institutionalized racism presents a public health crisis not only nationally, but here in Nebraska as well. But what is systemic racism? The American Academy of Family Physicians explains,
“As a system, racism has been institutionalized in a way that permits the establishment of patterns, procedures, practices and policies within organizations that consistently penalizes and exploits people because of their race, color, culture or ethnic origin. The system of racism affects the attitudes, beliefs and behaviors of one individual towards another (personally-mediated) as well as how individuals perceive themselves (internalized).”
Institutional Racism in the Health Care System, 2019
Stated plainly in the article Uprooting Institutionalized Racism as Public Health Practice in the American Journal of Public Health, “the past and present racial patterning of disease reflects institutionalized racism” (Bassett & Gravis, 2018). Parkinson’s disease does not escape the grasp of systemic racism. The National Institute of Health states that, “African Americans are half as likely to be diagnosed with Parkinson’s disease than white people” (Dahodwala et al, 2009). But does that mean they are half as likely to actually have the disease?
Or is it that black, indigenous people of color (BIPOC) are less likely to receive a diagnosis because of barriers put in place by institutionalized racism? In the article What is known about racial disparities in Parkinson’s disease diagnosis and treatment, Nabila Dahodwala explains how a lack of diagnosis, later diagnosis, and the under-treatment of BIPOC Parkinson’s patients “translates to worse outcomes, including higher mortality” (Dahodwala, 2013).
Many of us in the Parkinson’s world know the importance of seeing a specialist, such as neurologist or movement disorder specialist. Not being cared for by a specialist can lead to differences in referrals to specialized therapy, deep brain stimulation, lower enrollment in clinical trials, lack of physician knowledge, and limited access to services (Dahodwala, 2013). The American Academy of Neurology found that BIPOC are significantly less likely to be cared for by a specialist, leading to racial disparities (Willis et al, 2011).
Beyond the barrier of access, factors such as patient preference and attitudes, trust in the healthcare system, cultural beliefs about aging and health, and low health literacy all contribute to differences in race and Parkinson’s disease. Dahodwala provides an outline for how to combat these racial disparities. The first step is to recognize that they exist. Then, identify the factors causing the disparities and develop policies to reduce them (Dahodwala, 2013).
We know we are not experts on racism – and we plan to follow the lead of black leaders and healthcare professionals in how to dismantle systemic racism within ourselves, the Parkinson’s community, and the healthcare system. We want to follow up our words with actions and are working with a local organization that is a leader in anti-racism work to develop inclusive policies. We recognize there is a lot work to be done and we are committed to advocating for and celebrating the diversity within the Nebraska Parkinson’s community.
Just like we believe the journey of Parkinson’s is A Journey Shared, we also believe the journey to fight racism is a journey we all share. We have compiled a list of resources for you to learn more about systemic racism in the healthcare system and racial disparities within the Parkinson’s community:
Journals and peer-reviewed articles
CDC Health Disparities & Inequalities Report (CHDIR) – Minority Health – CDC. (2013, November 26). Retrieved June 26, 2020, from https://www.cdc.gov/minorityhealth/CHDIReport.html
Dahodwala, N., Siderowf, A., Xie, M., Noll, E., Stern, M., & Mandell, D. (2009, June 15). Racial differences in the diagnosis of Parkinson’s disease. Retrieved June 26, 2020, from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2858583/v
Dahodwala, N., & Parkinson’s Disease & Movement Disorders Center. (2013, November 20). What is known about racial disparities in Parkinson’s disease diagnosis and treatment? Retrieved June 26, 2020, from https://www.futuremedicine.com/doi/full/10.2217/nmt.13.62
Institutional Racism in the Health Care System. (2019, July 23). Retrieved June 26, 2020, from https://www.aafp.org/about/policies/all/institutional-racism.html
J. Patrick Hemming, M. (2011, April 11). Racial and Socioeconomic Disparities in Parkinsonism. Retrieved June 26, 2020, from https://jamanetwork.com/journals/jamaneurology/fullarticle/802818
University of Maryland Medical Center. (2010, December 13). Parkinson’s disparities. Retrieved June 26, 2020, from https://www.sciencedaily.com/releases/2010/12/101213163807.htm
Willis, A., Schootman, M., Evanoff, B., Perlmutter, J., & Racette, B. (2011, August 30). Neurologist care in Parkinson disease. Retrieved June 26, 2020, from https://n.neurology.org/content/77/9/851
Local articles
Douglas County Board of Health declares racism a public health crisis. (2020, June 18). Retrieved June 26, 2020, from https://www.ketv.com/article/douglas-county-board-of-health-declares-racism-a-public-health-crisis/32891594
Articles from our national Parkinson’s partners
Ana de Barros, P. (2017, May 24). African-Americans More Likely Than Whites to Receive Parkinson’s… Retrieved June 26, 2020, from https://parkinsonsnewstoday.com/2017/05/24/african-americans-more-likely-than-whites-to-get-parkinsons-treatment-in-hospital/
Interview with Parkinson’s Researcher, Dr. Tao Xie. (2019, November 19). Retrieved June 26, 2020, from https://www.apdaparkinson.org/article/ask-the-researcher-tao-xie/
Siddiqi, B. (2020, June 25). Racial Bias and the Parkinson’s Journey: Reflections from the Staff, Advisors and Community of The Michael J. Fox Foundation. Retrieved June 26, 2020, from https://www.michaeljfox.org/news/racial-bias-and-parkinsons-journey-reflections-staff-advisors-and-community-michael-j-fox
Wexler, M. (2019, June 04). Study Highlights Disparities in Patient and Physician Perceptions… Retrieved June 26, 2020, from https://parkinsonsnewstoday.com/2019/06/04/study-highlights-disparities-in-patient-and-physician-perceptions-of-parkinsons/
Podcasts
PD Across Race and Ethnicity: Outreach to the African American Community– The Parkinson’s Foundation
Webinars
Health Disparities and Parkinson’s: Understanding the Issue | Davis Phinney Foundation | Thursday, August 6th | 1:00 pm | Register here