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 .