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Deep Brain Stimulation and Parkinson ’ s
Disparities in DBS Access , Care and Outcomes : A Conversation
Denise Coley is a member of The Michael J . Fox Foundation Patient Council and the founder of Enable Your Vision , a firm that provides supplier diversity consulting to drive economic vitality for diverse businesses and corporations , and for the communities in which they reside . Michelle Fullard , MD , MSCE , is a movement disorder neurologist at the University of Colorado Hospital ; her research focus includes reducing gender disparities in Parkinson ’ s disease care and improving hospital care for people with Parkinson ’ s disease .
Denise : Michelle , thanks for exploring with me why those who need Parkinson ’ s care — and access to treatments like deep brain stimulation , or DBS — can ’ t always get it . For those from under-engaged communities , that is , women , ethnically diverse communities , rural communities and people of diverse backgrounds and cultures , it can be a real challenge .
Michelle : There are many reasons for these disparities , and they may be different depending on the community . These include a lack of standard information shared to all , regardless of their community ; delays in getting medical care ; lack of neurologist care ; lack of support systems ; fear of losing their income if they have to take time off from work ; social roles and anxiety about their families . My work focuses on eliminating these disparities , especially for women . On the whole , DBS is underutilized — and for under-engaged communities , it ’ s highly underutilized .
Denise : How do we begin to address the challenge ?
Michelle : We need to improve not just access to , but even awareness of , DBS . Too often , people learn about it after the ideal window has closed , so we can ’ t offer it . It can take years for many people with Parkinson ’ s to be diagnosed , even longer for some DBS candidates — especially those on Medicaid — to simply get a neurology referral . By that time , it may be too late to experience its benefits .
Denise : Deciding whether to have a treatment like DBS is easier when people can talk with someone who looks like them , who can understand their culture and background and they trust . For example , in certain cultures , your hair is your pride and then you hear it will be shaved off for DBS . Having someone to talk to about this issue prior to surgery can be helpful .
Michelle : They may not change their minds about getting DBS , but they ’ ll feel more prepared for how they ’ ll look afterwards .
Denise : The absence of that “ person who looks like me ” has a big impact on trust — and lack of trust can keep people from getting the care they need and deserve . But for now , how can DBS doctors and researchers better serve underengaged communities and build trust ?
Michelle : We can do a better job of educating physicians who make referrals , streamlining the evaluation process and developing a standardized way to talk with anyone about DBS that also takes into account the individual ’ s unique needs . Implicit bias exists , despite our best intentions to eliminate it . Telehealth and wearables may make the evaluation process for DBS more feasible for