Barriers to MS Care in Underrepresented Communities

Transcript

This transcript has been edited for clarity.

Ilana Katz Sand, MD: Hi. I'm Dr Ilana Katz Sand, and I'm joined here today by my patient, Sergio Colon, who we diagnosed with multiple sclerosis (MS) about 5 years ago. For today's Care Cues segment, we're going to be talking about physician-patient communication, with a focus on underrepresented communities in medicine. Thank you so much for being here today, Sergio. It's great to have you.

Sergio Colon: Thank you for having me, Dr Katz Sand.

Sand: Sergio, can you tell us a little bit about what happened initially and how you came to be diagnosed with MS?

Colon: Okay. So, the onset of MS started for me with sudden blindness. This began probably in late January of 2019. I started to realize that I was losing vision in my right eye.

I wasn't seeing colors. So, that prompted me to tell my mom. And then my mom took me to the emergency room of a local hospital called St. Barnabas. I stayed there about 4 days. And when I went to see the specialist, she basically told me that she wasn't sure if I had MS, but she did ask me to follow up with a major hospital.

So, I decided to make an appointment with the neurology department at Mount Sinai. And then, ironically, you were there and that same day you diagnosed me.

Katz Sand: If you can go back to that time and tell us a little bit about how you felt when we had that conversation. What kinds of things were you thinking about?

Colon: I wasn't really familiar with the condition prior to being diagnosed. So, it was very heavy. I remember leaving the office that day with my sister, and then I burst into tears because it was something that for me was ultimately like ending my life.

Katz Sand: Your experiences early on, I think, point to some of the challenges and barriers that everyone can face in terms of getting into care, but which I think are more difficult for people who come from underrepresented communities. You mentioned, for example, that you were seen in a local hospital, which is a smallish hospital in your community, right? And it took you a while to get to me.

Colon: It took probably 9 months.

Katz Sand: Yes, it was close to a year. So that's one potential barrier. Were there other things that you think led to that delay in the time besides the geographic location?

Colon: My community didn't necessarily have the resources to help me deal with what was going on. And I'm not just talking about not being able to be diagnosed on the spot, but also the depression that comes with some of what you go through when you hear something like that.

Katz Sand: Maybe you can tell us a little bit about how you felt in terms of coming to Mount Sinai. Did that feel difficult for you? Is it physically difficult to get there? And did you feel comfortable coming to a place that was outside of your tight-knit community?

Colon: To get to Mount Sinai, I have to take a bus, a train, and then transfer to another train. Back to how I felt coming to the MS center at Mount Sinai, I remember feeling very uncomfortable my first couple of times there, but more because I wasn't really familiar with the faces that I saw there. I never really had a relationship with someone who was Caucasian until I met you, Dr Katz. So, yeah.

Katz Sand: That's really hard, right? To go outside of your comfort zone of the community where you were raised and among people who look like you, and to have to go to a place where people don't look like you — that can be very uncomfortable. And I think that's warranted. It's something that, as providers, we have to be really aware of. With any person I see, no matter their background, I'm always looking to establish that trusting relationship.

But I think it's really important to be aware that for someone who's coming from a different background, there's that additional level there that really has to be overcome, and it may take more time. I think you have to be even more careful and more intentional about building that relationship for things to work well.

How long do you think it took for you to start feeling a little more comfortable and to feel like this is a place and a team that you could trust?

Colon: I would say that probably for the first 2 years, it was very difficult for me — not just because it was that people were White, but also because it was people who have disabilities, people who might not be okay. And you start to think, That may be me.

Katz Sand: I think that's a really common experience for people to have, but things are different now. And we know that if we can treat people early and stick with their treatment plan, most of our patients do really well. I always tell people, "If you saw most of my patients outside in the street, you wouldn't even know they had MS," right? Things can go really well, and look — 5 years later, you're doing amazing.

Colon: I just think that conditions like MS, they force you to change your entire lifestyle. And sometimes where you live isn't supportive of that change you want to make. The one clear example of this for me was when we had conversations about changing my diet. I had to start going to a Whole Foods in Harlem to start changing up my diet to prioritize my health.

I couldn't go to the local CTown and Food Bazaar around where I live. And that was a challenge for me sometimes.

Katz Sand: I hope you feel so proud of yourself for doing all this because you really put a lot of work in, and I think it's really contributed to how well you've done and how well I know you're going to do.

We've talked a bit already about some of the barriers that people experience. I think there is quite a bit that we can do, but again, people have to get to us, right? We're very fortunate at our center to have a social worker. It's not something that a lot of places have, but it's something that we value highly.

Something else that's really important that we continue working on is improving the pipeline of doctors, including making sure that we are training doctors who come from underrepresented communities themselves to be in these positions, where they are the specialists and are able to take care of people in the communities that they were raised in to help improve that comfort from the beginning. It's definitely a huge goal going forward for us.

Sergio, you've been on the same treatment since we started. That's your disease-modifying therapy, right? We've also worked on a lot of other things to try to manage your symptoms and to get you really feeling your best.

Maybe you can tell us a little bit about what your experience has been like with your medication and also the other interventions and things we've been working on.

Colon: So, everything with the infusion has been really successful for me. I haven't really had any complications since starting. Of course, minor things happen here and there, but for the most part I'm really comfortable taking the medication now, and I feel well.

I think that my care with you has been very holistic. It's been about me changing different aspects of my life, like me going to see a therapist or me changing my diet or me starting an exercise routine. So, it's been very holistic, and it's been producing results for me.

Katz Sand: Maybe you can tell us a little bit about what you're doing now. I mean, the amount of stuff that you're doing, your schedule on a daily basis, is absolutely amazing.

Colon: I am a senior at Lehman College right now. I am graduating and should be getting a DSW degree later on this month. I'm also now an intake specialist at a homeless shelter in the Hunts Point section of the Bronx. So, a lot of the changes that MS has forced me to make have worked to my benefit, but my goal, if I have to say one, is that I just hope that with what I'm doing, it changes that journey for the next person of color.

Katz Sand: It's really wonderful. It really is. I hope you feel really good about it because it's such an amazing attitude, especially with how much you have on your plate for yourself and how much you have to do to have that kind of look at everything. Sergio, thank you so much for joining me today. It's really been wonderful to talk to you, and I really appreciate you sharing your story with everyone.

Colon: Thank you for having me. It's been a pleasure.

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