Episode 39: PD Across Race & Ethnicity: Outreach to the African American Community

Dan Keller 0:09
Welcome to this episode of Substantial Matters: Life and Science of Parkinson's. I'm your host, Dan Keller. At the Parkinson's Foundation, we want all people with Parkinson's and their families to get the care and support they need. Better care starts with better research and leads to better lives. In this podcast series, we highlight the fruits of that research, the treatments and techniques that can help you live a better life now, as well as research that can bring a better tomorrow. Parkinson's disease cuts across all racial and ethnic populations, but how well people do with the disease depends upon when the person recognizes its symptoms, reports them to a health care professional, and gets a correct diagnosis and treatment—and the earlier, the better—to lessen disability, improve quality of life, and slow down progression. While PD can affect all individuals, regardless of race and ethnicity, there is a misperception among African Americans that Parkinson's is not common among their community, often leading to delayed diagnosis and treatment. Dr. Reversa Joseph, a movement disorders specialist at the VA in Columbus, Ohio, and adjunct assistant professor of neurology at The Ohio State Wexner Medical Center, says one approach to this problem is outreach to the African American community with information on the disease, including the early symptoms one can look out for. She describes the perceptions in the community and her efforts to raise awareness of PD. What is the perception of Parkinson's disease in the African American community, if there is a way to generalize, or are there any segments that view it one way or another?

Dr. Reversa Joseph 2:07
So I think kind of a general perception would be that Parkinson's disease is a disease of white men. And so the perception is that it's really not common to occur in African Americans. And so I think that it's a huge misperception that leads to the underdiagnosis of patients with Parkinson's disease in African Americans. And at least when they are diagnosed, it's occurring really later in the course of the disease. And African Americans tend to have worse outcomes in terms of their disability from Parkinson's because of the late diagnosis of the disease.

Dan Keller 2:49
Is there any racial predilection, or is this completely a misperception?

Dr. Reversa Joseph 2:55
Studies looking at racial differences in the diagnosis of Parkinson's disease—there was a study that looked at VA patients that carried the diagnosis of Parkinson's disease, and there actually were racial disparities in terms of the diagnosis. And they thought that maybe some of that racial disparity, the differences, could also be due to this not being recognized also by the physician. So not just that the misperception is just among patients or African American patients, but maybe also physicians' perception as well, that this is more commonly seen in Caucasians, not really recognizing maybe some of the symptoms in African Americans that may also be having signs of Parkinson's disease as well. One other thing that could contribute to some of African American patients being underdiagnosed by the physician is that they may not report some of the symptoms to their physician—one because they think that some of the symptoms they may be having, such as becoming slower with their movements or having some balance issues or having falls or stiffness, may just be due to old age. So they may not really bring this up to their physician, and then that's another way that it may not be diagnosed as well.

Dan Keller 4:18
So how do you reach out to the community to let them know that maybe it's not just old age or that you actually have a treatable disease?

Dr. Reversa Joseph 4:28
Right. So I think this is part of a lot of the campaign in terms of increasing the awareness, not just in the broader community, but also in the African American community. We say at large about 1 million Americans are currently living in the U.S. with Parkinson's disease, and 60,000 new cases are reported by the Parkinson's Foundation every year of new patients or new cases being diagnosed with Parkinson's disease. I think there's good awareness in the larger community, but the awareness within the African American community is not as good. So some of the things that the Parkinson's Foundation and I have been partnering with is to reach out to some African American communities. We've done some talk shows, been at some health fairs, community health fairs, things like this, to increase awareness and talk about some of the symptoms and signs of Parkinson's disease.

Dan Keller 5:24
So it sounds like it's not really just a medical community effort, but the general community and general media should be involved.

Dr. Reversa Joseph 5:33
Absolutely, yes. And when we're talking about deep brain stimulation, a lot of the advertisements and campaigns for deep brain stimulation, which is one of the treatments for Parkinson's disease, the patients that are advertised in the commercials are all Caucasian white men or women. You rarely would see an African American being presented in one of these commercials or videos. So that's just less identification—you are not seeing that on TV as something to associate in African Americans, which decreases the awareness that this could also occur to you.

Dan Keller 6:12
What about those avenues we often hear about in the African American community, where people discuss things such as barbershops and church and things like that? Do they have a role to play? Or is this just a misperception of what's going on?

Dr. Reversa Joseph 6:27
Right. No, they also have a role to play. We have actually done a campaign or partnership with the NAACP to help increase awareness. So I think starting with community organizations like the NAACP, some of the health fairs have also been in collaboration with other local churches. But definitely these other avenues, like churches and barbershops, it would be great to increase awareness about that. Oftentimes, when I've talked to patients or families, they will say that, oh, well, we noticed that grandpa or my dad had tremor, but we just thought that was old age or he was just nervous. But they didn't really think that that tremor could have been due to Parkinson's. They noticed that dad or mom was slowing down and complaining that they felt really stiff, but those things were never really attributed to Parkinson's. So again, just really trying to increase awareness in the community.

Dan Keller 7:31
So it sounds more like a problem of perception and awareness and reporting than actual resistance. Is there any resistance or suspicion of the medical community?

Dr. Reversa Joseph 7:42
I don't think that there is suspicion of the medical community. First of all, Parkinson's disease is a clinical diagnosis, so part of it is based on clinical symptoms that the physician may see the patient have on exam, and then also the history. So maybe at that point, the patient may not have significant tremor, but maybe they were having other what we call non-motor symptoms that were not reported, including REM sleep behavior disorder, where patients are talking in their sleep, acting out dreams, may hit or kick their caregiver in their sleep. And often this can occur many, many years before they even develop motor symptoms such as tremor or slowness of movements. And if that's not reported to their physician, that may not clue them in to think of a neurodegenerative disorder such as Parkinson's. Other things like loss of sense of smell and constipation, having some falls, even having hallucinations, cognitive or memory issues—patients may be afraid to tell their physician that they could be having some of those symptoms. And maybe having that cue that they were having some of those non-motor symptoms could help the physician think about Parkinson's in their differential diagnosis.

Dan Keller 9:04
Do you have ways to gauge the success of your outreach? Have you been able to tell that it's working?

Dr. Reversa Joseph 9:10
Well, this is in its infancy stage, so we're just beginning in terms of the campaign, especially the collaboration with the NAACP. I think previously there's been some studies reported looking at racial differences in African Americans in the diagnosis of Parkinson's, and research or articles written, but this isn't something that patients have access to. And so I think in the medical community we're beginning to have some awareness about potential racial differences and underdiagnosis of Parkinson's patients, but I think we still have a ways to go in terms of improving awareness in the African American community.

Dan Keller 9:53
Have you run across anyone who has come in because of some of the outreach, and what's their reaction if you have had these encounters?

Dr. Reversa Joseph 10:01
So a recent radio segment that I did about a month ago, we had a few phone calls and referrals from that for patients wanting to get evaluated, just to have a screening, because they felt that they were having some symptoms. And one patient did end up having Parkinson's disease. Another was not, and actually had another form of tremor called essential tremor. But it was good that the patients came in just to be evaluated, because we have treatments actually for both. So I think in small ways we're having some success, but we still have a lot more work to do.

Dan Keller 10:41
Is there anything interesting or important to add that we haven't hit upon?

Dr. Reversa Joseph 10:46
One of the interesting things that I've seen come up in research is that maybe some of the cognitive or memory issues that may be occurring in Parkinson's may possibly impair the patient's ability to recognize some of the symptoms they may be having to report to their physician. And secondly, making sure that patients with Parkinson's disease who are African American are also receiving appropriate therapy and care. There was a study looking at patients with Parkinson's disease who were African American that showed differences in treatment compared to Caucasian patients. So I thought that was interesting. And I think further research needs to be done—are there truly differences in how we treat and in the algorithms that we would use in terms of management? You would not think that it should be any different. And if there are differences occurring, why is that? And I think what's so important is that this is an exciting time right now in the treatment and management of patients with Parkinson's disease because we have new medications that have come out to help with symptom management. And so that's why it's so important for us to increase this awareness, because we can actually help treat some of the symptoms that patients are having, to help reduce falls, reduce tremors, improve their mood—these types of things. And so we first have to get them diagnosed so that we can get them on treatment and these new therapies. So I think that is very important.

Dan Keller 12:25
Well, I really appreciate it. This has been very good. Thank you.

Dan Keller 12:32
The Parkinson's Foundation offers community grants to develop and expand programs to better the lives of people living with the disease. One such program is in the Chicago area, where African Americans with Parkinson's have been underrepresented in movement disorders clinics, as they are across the country. Some of the goals of this African American Parkinson's Disease Center are to determine unmet needs, provide clinical resources, and promote research for this community. If you would like to find out more about Parkinson's and African Americans, you can call our toll-free helpline to speak with our PD information specialists. They can answer questions and provide information about this topic or anything else having to do with Parkinson's. You can reach them toll-free at 1-800-4PD-INFO. If you have any questions about the topics discussed today, or if you want to leave feedback on this podcast or any other subject, you can do it at parkinson.org/feedback. At the Parkinson's Foundation, our mission is to help every person diagnosed with Parkinson's live the best possible life today. To that end, we'll be bringing you a new episode in this podcast series every other week. Till then, for more information and resources, visit parkinson.org or call our toll-free helpline at 1-800-4PD-INFO, that's 1-800-473-4636. Thank you for listening.

Dr. Reversa Joseph is a Board Certified Neurologist specializing in Movement Disorders. Dr. Joseph’s focus is treating patients with Parkinson’s disease using a comprehensive and integrative approach. Dr. Joseph received her Bachelors of Arts at Columbia University, Medical Degree at Georgetown University and completed her Neurology Residency training at Yale University. She pursued fellowship training in Movement Disorders with a focus in Deep Brain Stimulation and Botulinum Toxin Therapy at Georgetown University. Dr. Joseph has also completed a fellowship in Neurophysiology at the National Institutes of Health where she focused on autonomic dysfunction in neurodegenerative disorders and researching biological markers to predict the development of Parkinson’s disease (PD). She has conducted clinical trials in cognitive disorders in PD and the use of Transcranial Direct Stimulation to improve mood, speech and gait in patients with PD. She serves as Adjunct Assistant Professor of Neurology at The Ohio State Wexner Medical Center and Movement Disorder Specialist at Chalmers P. Wylie VA. Her current research interests include mindfulness based training for improvement of gait in Parkinson’s disease and developing an Integrative approach in the treatment of neurodegenerative disorders.