11
Before Surgery
A lack of awareness and access to DBS means that the treatment is underutilized— and this is especially true for women and under-engaged communities, according to Denise Coley, left, and Michelle Fullard, MD, MSCE.
those who live far away from DBS centers, as well as finding a support system for people who just don’ t have one.
Denise: Nothing’ s going to change unless we get people in the pipeline. For example, there are very few Black neurosurgeons, movement disorder specialists and neurologists, so we also need more medical students of color entering the field along with providing culturally sensitive materials and updated medical illustrations.
And for people seeking care, it’ s estimated that 90 percent of DBS patients are Caucasian. African Americans make up 10 percent of those covered by Medicare, but only two percent— or less— are DBS patients. Seventy percent of DBS patients are men, and they have a better support system than women in terms of caregivers and recovery from surgery.
Michelle: We interviewed 33 people with Parkinson’ s disease to learn about their DBS decisions, to better understand what the process was like for women. Even though everyone went through the same evaluation process, conflict about the decision was much higher in women than men. Support made a big difference. Many
women had to piece together the support just to have the evaluation.
Denise: Women feel they may not have time for DBS. They may be the breadwinner or a care partner in their household, working, caring for their children.
Michelle: Some women worry about how they will support their own support person!
Denise: So, despite the challenges and systemic issues that need to be addressed, how can people in under-engaged communities currently advocate for themselves?
Michelle: People need to learn as much as they can about DBS so they can ask for it and then be persistent until they get that referral. They can also connect to a Parkinson’ s organization— such as The Michael J. Fox Foundation— or with a social worker or someone who has had DBS. While the medical professionals continue to address the inequities to care, my hope is that everyone will also take advantage of the resources available to educate and advocate for themselves— this will make a difference on a personal level.