Caring For The Displaced: Advocacy For Refugee Communities featuring Emily Bernstein

In this podcast episode, we sit down with Emily Bernstein, who shares her journey into patient advocacy. Emily's advocacy work began when her mother was diagnosed with brain cancer in 2019. Her mother's challenging path to diagnosis and treatment inspired Emily to get involved in helping others navigate the complex healthcare system. Emily's experience as the eldest daughter and her background in international education and customer service equipped her with the skills to negotiate with medical professionals, work with billing departments, and provide support outside the medical system.

As an advocate, Emily has specialized in medical billing advocacy, aiming to bridge the gap between patients and billing departments. She also works with refugees, primarily Haitians, helping them navigate the U.S. healthcare system and connect with vital resources. Her ultimate goal is to create a center that offers comprehensive support to those in need. Emily also discusses her certification as a community health worker, which complements her patient advocacy work, and the importance of cultural sensitivity when assisting individuals from diverse backgrounds.

Emily's story underscores the vital role that patient advocates play in helping people overcome healthcare challenges, and her work with refugees adds an important layer of cultural competence to her advocacy efforts.

Transcript

Host

Emily Bernstein, thank you so much for being on the patient advocacy now podcast. How are you feeling today?

Emily Bernstein

I'm okay. I'm getting over COVID. So it's been an adventure, but it's my first time.

Host

And you managed, we were talking right before the interview, you managed to avoid COVID till now. So you're one of the last remaining standing people that found you into the corner. Well, it sounds like you're doing okay. So thanks for kind of muscling through the interview. Why don't we start with how you got into advocacy and what it means to you? I always find that.

Emily Bernstein

It found me.

Host

There is, you know, unless you're a nurse and it's one of those things where you're like, I'm getting out of nursing and into advocacy. The way people come into it is always so fascinating.

Emily Bernstein

Yeah, absolutely. So I've told this story a bunch of times before, but my mom was diagnosed with brain cancer in 2019. But actually it was kind of the journey up to that point was a really big hurdle to come get over. Like it was so hard to actually get a diagnosis for her. And so it was back and forth and back and forth to all these different doctor's appointments and

Host

Yeah.

Emily Bernstein

to look at all of her symptoms and really take, I mean, I guess it was a risky surgery to do the biopsy, but when we actually found out she needed a biopsy, I had to find someone who would do the surgery. So anyway, so that whole process of getting the diagnosis was a really, really long struggle. And then after they did the biopsy, they diagnosed her.

It was six, seven months of chemo and rehab every two weeks. And then she had a stem cell transplant on, I think it was like March 20th of 2020, which is the day Michigan went into lockdown for COVID. So that was another fun adventure. But anyway, so through that whole journey, I was with her in the hospital a lot.

I was doing as much as I could. I'm in Rhode Island, she's in Michigan, so it was a lot of long distance kind of arm wrenching over the phone. So I learned a lot about that. And I realized how much it really takes people not in the medical system to get somebody well. It takes a lot of people who are outside, who can think creatively, and who can pull levers and push buttons.

Host

Yeah.

Emily Bernstein

that your doctors don't have access to in order to actually get results. So there was a lot of that. We worked with, you know, discharge coordinators, social workers, advocates at her insurance, at the hospital, kind of a whole range of people, but there was no one person that would really, that could make all of the things happen that needed to happen. And it ended up falling to me.

And as the eldest daughter, I'm sure there's a lot of us out there, but I realized I was pretty good at it. So I, and we've gone through so much and I learned so much that I kind of just wanted to help other people go through, figure out the same steps that we had already figured out.

Host

Thank you. Is your mom still struggling with brain cancer? Wow, congratulations. That's amazing.

Emily Bernstein

She is cancer free, actually. Yeah, so she was cancer free after about seven months of chemo, and then the stem cell transplant was consolidation therapy is what they call it. She's got a lot of mobility issues and brain damage from the cancer, so that's a whole other thing, but she's cancer free, so that's good. Yeah.

Host

Yeah, that's amazing. What was, before we dive into kind of more of what you're doing now on the advocacy front, why was it so difficult to get a diagnosis?

Emily Bernstein

So the diagnosis she got was lymphoma of the brain. So central nervous system lymphoma, which is a diffuse cancer. It's not like she had a lump growing in her brain that they were just ignoring on her brain scans or anything like that. It was a diffuse disease that wasn't visible or wasn't really testable or nobody could find it.

on any of her skin. So it took a long time for it actually to get big enough where they could see it, unfortunately. But they, you know, based on her symptoms, they diagnosed her with strokes. They thought it might be Lyme or MS or any number of other things. And you know.

Host

So it sounds like she had quite a few different systems, excuse me, symptoms in terms in terms of how it manifested.

Emily Bernstein

Symptoms, yeah. Exactly, yeah, it was all just sort of, her body was sort of acting very weird. And she had dropped foot, she started getting full urinary incontinence and all these kinds of scary things that could be symptoms of any number of different diseases. So yeah, until they could actually see it, nobody really knew what it was, so.

Host

Got it. Got it. So what did you, so you had to kind of quarterback the whole thing from a couple of states away. And you learned the difficulties of navigating the healthcare system. Is that what kind of inspired you to go into advocacy for other people?

Emily Bernstein

Uh huh.

Emily Bernstein

Yeah, absolutely. So my background is actually in international education. And so, and then I've worked for many years in travel and customer service. So, you know, I realized my skills being on the other side of the phone really helped me learn and know how to negotiate with people in order to get results. And so, yeah, so there was just.

Host

Mm-hmm.

Emily Bernstein

so much of a learning curve with the medical system. And I think too, there's so many people that are really intimidated by the medical system, like people in white coats, it's just a big, scary entity that what they say goes, right? Like there's, their word is the end all be all, and you would never think too contradicted. But when we had seen so many doctors who were like, I don't know, you know, you kind of get to a point where

Host

Hahaha

Emily Bernstein

that I wasn't intimidated anymore. And so I was able to really push them to answer specific questions. Like I would literally walk in with a clipboard and a tape recorder or my phone recording, you know? Because you sometimes need someone to tighten those screws and ask the hard questions. So yeah, that's kind of what I learned and what I wanted to do for other people.

Host

And because of your international education background, you work with refugees. Is that where the connection is?

Emily Bernstein

Yeah, yeah. So that's been kind of a journey. I've always wanted to be able to help, obviously, other people in general, but I've had my last job actually was at a refugee resettlement agency. And I've always wanted to help people who are newcomers to our health care system, because, you know, I can, I've been through our experience, but if you layer on top of that, not knowing the, you know, the bus system, not knowing the language, not knowing

how to ask for help having all these cultural barriers. It just, it seems, I've seen it in action where it's just so much more stressful. So yeah, I've always wanted to bring my company and bring my help to the refugee population. So with recent partnerships, I've been able to do that, which has been really great.

Host

amazing. And what do you do you find that you are fulfilling that role of kind of navigation more than anything in the in the advocacy space?

Emily Bernstein

Yes. So I have been with my private paying clients, I have been specializing with unbilling medic billing advocacy. So that again, it's being on having been on the other side of the phone, I know how to work with people in billing departments that are beholden to, you know, policies and procedures. So that's been where I've helped a lot of people. And then yeah, with the with the refugee population, it's

Honestly, it's so much simpler. Like after what we did with my mom, I call that like a thousand piece puzzle. And with these refugees, they have 25 piece puzzles, but they're just as overwhelmed and confused as we were.

Host

Why is it so much simpler?

Emily Bernstein

Oh, because really they just need a GP. You know, they need a primary care. Like I've spoken with people who have yeast infections and they don't know that their CVS is gonna have that treatment for 50 bucks over the counter. And then there are some people who have struggled with symptoms for so long that they just don't even know, but they don't even know where to call or who to pick up the phone and ask. So, and even if they do.

pick up the phone, you know, you need to, like a doctor can call you using a translator, right? So they can have a translator. But if you call the doctor, there's no real way for you to guarantee that you're actually gonna be able to be heard, which is like such a huge loophole in our system. It makes me so angry. But yeah, so those kinds of things, it's just a question of connecting people with the right language and resources.

Host

And so how do you get connected with these people?

Emily Bernstein

Great question. We're figuring out kind of a sustainable way to do that. Right now I have a partnership with the Department of Human Services. And with them I'm working on just kind of more general resource referrals. So people come to us if they are eligible for food stamps, bus passes, cell phones, English classes, things like that, but they're not enrolled. Like if you're eligible for SNAP.

food stamps, but they're not getting it, then I call them and say, hey, you're eligible. And also, what else do you need help with? And a lot of those people have expressed health care concerns as well. And so with that, I refer them over to my colleagues that are helping with the refugee health navigation.

Host

Got it. So you're kind of in this interesting role where you are a, you're BCPA, so you are a patient advocate, yet you're passing off a lot of the healthcare because you're so busy with the other resources that refugees need.

Emily Bernstein

Yeah, that's true. So I'm also a certified community health worker, which I'm really excited about that tool because it is, first of all, it's a national certification, just like BCPA. It's state by state, but it's recognized nationally. And there's some really cool movement going on in that space because...

Host

Mm-hmm.

Emily Bernstein

people are seeing the value and the need of community health workers who can just go into literally people's homes if need be and help them. It's also reimbursable by Medicaid. So I'm a Medicaid provider. Navigate Health is approved by the state of Rhode Island. So I can bill for my colleagues' time when they're providing this case management and mentorship for refugees.

Host

So I was going to say, if you could define what a community health worker is in case people don't know it. So you're going into the home and you're essentially providing education directly in the home. And what do you cover?

Emily Bernstein

Yeah, so it basically, the reason it is covered by Medicaid, because the need has been established that there is a gap between the medical world and people's home lives. And so community health workers are meant to fill that gap and provide education and training, like how to take the bus to fill a prescription or how to schedule an Uber or who to call, where to go.

That kind of thing.

Host

just to make it functional.

Emily Bernstein

Yeah, exactly. Yeah, like actually helping the providers. Health. It's almost like if you go to a doctor's appointment, your health care is only as good as what happens in that room. If you once you leave that room, they have to know how to use the health care that you're actually providing. So it's almost like the doctor's work is essentially ineffective sometimes if they don't know how to actually take care of or follow the instructions the doctor is given.

Host

Sure, makes perfect sense. And are you connected with these people through the same resources or because it's Medicaid, do you find that you're getting the clients through a different referral source?

Emily Bernstein

So, so far it's all been through that one referral source. But my goal eventually is once I get more stable funding is to create kind of a center where people can just sort of walk in and really anybody that needs it and hopefully will have a reputation. We're already getting a reputation in certain communities that, hey, if you have this kind of problem, you can call them. So.

Host

Well, speaking of funding, I know that you've done some work with grants. Can you go into what that process has been like and what you've learned?

Emily Bernstein

Sure. So I think Rhode Island is very small. So I think it's an interesting kind of ecosystem for grant applications because everybody knows everybody. Like it's literally everybody knows everybody.

Host

like California or Texas where it's like a country, right?

Emily Bernstein

Exactly. Yeah. So it sounds very, even up in Massachusetts, it sounds really intimidating to apply for a grant up there. But I have made some really good connections in our department of health who see the needs of what I'm doing. So yeah, I have gotten one grant that was for refugee health navigation. And so that helped us establish some of our operating systems around what we're doing to help refugees.

And then I also have a grant to, well, hopefully I'll be getting a grant soon to help navigate the Medicaid renewal process so that those renewals are gonna start happening again after COVID and they're freaking out that people are gonna lose coverage. So with that, I'll be able to kind of continue the work we've already been starting, but adding in this other layer of the renewals.

Host

That's great. So what is the vision for you? It's to have that center. And what do you find more fulfilling? Is it the community health worker role or the advocate role? I mean, because you're kind of straddling two different, you're wearing two different hats.

Emily Bernstein

Yeah.

It does feel like that, yeah. I really wanna figure out a way to make them all be the same hat. The community health worker role though, it is, I mean, on the one hand, it's very fulfilling, but on the other hand, there's a demonstrated need. And so there's more funding and more kind of enthusiasm. I think the patient advocacy.

there's something to be said for all the work that they're doing, we are doing to get the word out there. So I think, I hopefully patient advocates will be seen as, as ubiquitous as lawyers and accountants and everything that you need a patient advocate in the future. But right now there is more kind of support and structure around the community health worker side of things in terms of what I'm doing. So that's kind of where I'm probably gonna be pursuing.

Host

Yeah.

Emily Bernstein

in the nearest future.

Host

Just because there's availability there, there's funding, like you said, there's a very clearly identified need, makes perfect sense. And when you're dealing with the refugee kind of culture and the demographic there, how do you kind of get a little bit more versed with cultural competency, especially because you're dealing with a vast array of different cultures? I mean, America is a huge melting pot.

Emily Bernstein

Yeah.

Emily Bernstein

Absolutely. Yeah, so right now I'm actually just working with Haitians because they're coming through on a visa that is getting as the littlest amount of support so these people are coming in and they really don't know They're not getting much guidance at all So right now I am working with just Haitians and it's been fun to because I do speak French But I definitely don't speak Creole. I thought I'd be better at it than I am

But it's been fun to learn a lot more about the culture and the politics. Like I follow some Instagram pages about, you know, current events in Haiti. Um, but more in general, um, it's about kind of being seen as the trusted resource. And so with that, it's, you know, being empathetic, understanding a lot of these people have gone through trauma. They've gone through unimaginable things really. And, um,

being understanding, being patient and listening, of course, to what their needs are and doing my best to provide for them. Yeah, so it's really the cultural sensitivity lessons that I've learned through working with people from all over the world and traveling all over the world as well. Those are ubiquitous no matter what culture you're from.

Host

So you don't think there's, I mean, an advantage that you've basically just worked with one population, it kind of translates across. cultures.

Emily Bernstein

Um, I mean, going back to reputation wise, I mean, again, Rhode Island is small and as a provider in Rhode Island, I want to be seen as, you know, this trusted source. And I know that the Haitian community talks and like everybody knows everybody. So I do definitely understand that there's a benefit to spreading the word.

Host

Sure.

Host

Well, I think you'll find that any refugee population talks because they want to connect with somebody. And so, you know, it's, it's funny. I mean, my father's Israeli and I remember like to this day, some of his best friends are people he met at a gas station because he heard a common language and like, you can't do that as an American, Hey, you speak English. So it's, it's true. I think you're right that, you know,

Emily Bernstein

Exactly. Yeah.

Host

having that reputation of someone who is genuinely helpful, genuinely cares, and will give you the time of day to help sort things out, um, is completely in line with what advocacy is, whether you're doing it as a, as a, as a community health worker, as an advocate, that spirit of we're here to help is, is pretty universal.

Emily Bernstein

Uh huh. Mm-hmm. Yeah. You know, handing my phone number around on napkins and stuff at church meetings, like that's what I hope, what I'm dreaming happens, that kind of stuff. So, yeah.

Host

Very cool. Well, what's the process to become a community health worker? Is it something you recommend other advocates look into?

Emily Bernstein

Yeah, I really am passionate about creating this bridge. Again, I mean, I think that there's so much similarities. It makes so much sense that we should collaborate more. So community health workers, again, it's a state certification. So there's a Rhode Island certification board and I had to do a certain number of kind of practicum hours.

There's no education that's required, but you have to work in the fields for a certain number of hours. And then a fraction of those need to be supervised directly. So I did all of that. I did all of that actually doing advocacy work, my billing advocacy, because I hadn't started the community health project. So they did really line up. And then you have to do kind of a portfolio. So write a few essays. I provided all my pack board, my...

Host

Oh, great. Yeah.

Emily Bernstein

BCPA certification, the courses I took at the patient advocacy certificate program through UCLA. All of those were part of my portfolio. And then, um...

I'm trying to remember, it was a fairly exciting time.

Host

Well, I think that the big headline is that it's mostly hour based. And for an advocate, you could kind of utilize hours you're already doing as an advocate to kind of get this qualification, which makes it like a no brainer for a lot of advocates. Like you're already doing the work. You might as well have another thing tucked under your belt.

Emily Bernstein

Absolutely. I totally agree.

Yep, exactly, more letters after your name. Yeah, and I did it even, I did it through my company. So it was like, you know, the supervised hours I did, I was working with someone else partially, but a lot of people, like in Rhode Island, the typical course is that you work for, you know, a clinic or a PCP office or something like that, and you get your experience that way. But they, you know, they were very supportive. And actually I was invited to speak at a,

panel in the future on how to like alternative ways of becoming a community health worker. So yeah, they're very enthusiastic.

Host

Very cool.

So navigate health, your company, is it, I mean, obviously there's a lot of focus in Rhode Island, but because these are more national degrees and you helped your own mother across states, I assume that you do take clients on from kind of anywhere in the country, is that right?

Emily Bernstein

Yeah, so the refugee work that I'm doing, because it is so benefits-based right now, like helping people get food stamps, that kind of stuff. So that is pretty specific to Rhode Island. But for my advocacy work, I have people all over the country. I have people in...

Host

What's the best way to reach out to you and connect with you on that front?

Emily Bernstein

Yeah, absolutely. So my email, it's on my website, which I'm sure you'll be linking to, right? So my email, I'm always...

Host

Yeah, it's navigate health eb.com.

Emily Bernstein

Yeah, correct. E is in Emily, B is in Bernstein. So yeah, so my email, I'm always on there. You can also find my Calendly link and sign up for actually a one-on-one session right on my website as well. Yeah.

Host

Fantastic. Emily, I really appreciate all the time you gave us and kind of pulling back the curtain on areas that advocates don't explore more. I think that's super helpful. Thank you so much.

Emily Bernstein

Yeah, absolutely.