Meet an Engaging and Inspiring Advocacy Role Model

Introduction:

Rebeka is the mother of two teenagers born with congenital illnesses. Having worked in hospital systems and for a large insurance company, while caring for the complex medical needs of her family, she took took the leap into Independent Patient Advocacy. Today, she’s on a mission to prepare generations of patients and families to be informed health consumers, by providing free health navigation, advocacy, and education services. 
 
She runs her advocacy business as a nonprofit and she provides her services to patients and families at no cost. Listen to Rebeka’s story and how she juggles advocacy, motherhood, running a nonprofit, and raising money to keep her services free. You’ll quickly discover why Rebeka is the proud and deserving recipient of one of the Independent Patient Advocate of the Year awards at the Healthcare Advocate Summit in September, 2023.

Host:

Rebeka Acosta, welcome to the Patient Advocacy Now podcast. Thank you so much for being here. How you doing?

Rebeka Acosta:

I'm great, thank you so much for having me.

Host:

Yeah, I, you know, having people on the program that have been involved with advocacy and been doing it as long as you have and kind of know what's going on in the industry is always helpful for everyone to listen to. And with that said, I'd really like to dive in and have you tell your story of how you got started in advocacy.

Rebeka Acosta: 

Sure, great. So I am the mom of two teenagers now that were born with congenital illnesses, and that's really what launched me into advocacy. At the time, I did not know that what was happening. It was kind of an organic process, but after having worked in healthcare administration on the back end, so to speak, for 15 years, I really got an in-your-face experience of being a patient and a family member.

with significant medical conditions and constant interaction with the health system. So through open heart surgeries, airway surgeries, all of the evaluation procedures, I learned so much the hard way. And as we came out of that, the big tunnel, and we were more stable, and we weren't interacting with the system as much, I just had this burning urge to share what I had learned with other families.

Host: 

Wow.

Rebeka Acosta: 

Sometimes as silly as, you know, when your kiddo is in the hospital for this procedure or this surgery, go to this floor in the hospital. There's a nice waiting area they don't tell you about. You can sleep, cry, eat there. It's a safe little alcove and you can just be. From tips like that to knowing the name of the social worker in certain departments, to ask for her by name, that's really how it started. And then when I was ready to go back to work.

Several years after the kiddos were part of our family, I was a little hesitant to just say, I'm going back full-time into healthcare administration. After that experience and that almost 10 years of being a family and a patient, I looked at things a little differently. I couldn't imagine myself going back to the other side and playing the corporate healthcare game. I started to volunteer with a national nonprofit.

And that's really where I sunk my teeth into healthcare advocacy, a lot of it on the legislative side and going to conferences in Washington, D.C., having meetings with our congresspeople. That really lit a fire to me to see how the healthcare system really depends on politics, who's in office, what their previous voting records are, what they feel the health system should be.

And I, after learning about that process, and then having had my experience with my kids, I just couldn't let it go. I have to do something. So I went back to work full-time with that same nonprofit. And then in 2021, COVID, as it did for so many people, pushed us to do things different, to take the leap that we may have been scared about. And so then I left full-time work and started ANJ patient advocacy here in Southern Nevada.

Host: 

It's a great, quick, condensed version. There's so much there to unpack. First of all, when you say you worked in healthcare administration, did you work for an insurance company, for a hospital? What were you doing?

Rebeka Acosta: 

Hehehe

Rebeka Acosta: 

Yes, so several places. I worked for hospital systems, both for-profit and nonprofit, a lot of times in the accounting and finance departments. And then I also worked at one point for a large insurance company, processing accounting and finance things as well. So I really got to see the nuts and bolts of what our healthcare system hinges on.

Host: 

What do you think is the most, because you've worked on that side, what do you think is the most shocking thing that a lay person who's not involved in healthcare at all would be, you know, kind of surprised to find out?

Rebeka Acosta: 

I think probably at this point most people in the United States haven't have a pretty good understanding that our healthcare system is really based on money and not taking care of the patient. But to the degree that that is true, I think is is not necessarily common or public knowledge and when you see it firsthand, whether it's yourself or loved one or you hear a story on the news or read something.

It's upsetting. It's just, you'd like to think that, you know, we're such a wonderful country. We, you know, we should be taking care of our children, our elderly people, our people that are living with disabilities and it just, that's not how the system's set up. So I think as people learn the specific examples of how our system truly works, it's just really, at the humanity level, I think it's really upsetting for me especially.

Host: 

Can you, do you have an example or two that might actually help paint the picture? Obviously you can keep it anonymous, but just to kinda, I feel like, you know, it's great to talk about that stuff in the abstract, but when you hear a specific story, it really kind of helps frame it.

Rebeka Acosta:

Absolutely, so I can think of two right off the top of my head. It was last week or the week before I read an article on ProPublica and they're doing a series about finance and healthcare loosely. And this particular article was about an investigation into Cigna, the large insurance company, and how in one month their physician reviewers denied

I don't know, some absurd 100,000 claims or something like that without even opening them. They were investigating how long it took each claim review and within seconds they're just opening and denying, opening and denying, opening and denying. And the investigation explored how much money the insurance company saved by denying these appeals. And it's pretty crazy.

Host: 

So it's almost like they, instead of, they just kind of made, I mean, 100,000 is an insane amount, so it had to be some kind of company policy to just, they made some kind of calculation where a certain percentage of people won't fight the denial at all, will save so much money, so let's just deny X amount of percentage and.

Rebeka Acosta: 

Right.

Host:

the people who have the strength and the intelligence to kind of push through will deal with those in a different way. But yeah, that's, it should be criminal to do something like that.

Rebeka Acosta: 

Right. Right. You would think, yeah. And the piece of the article that I really remember is that the patient that ended up being essentially the first whistleblower was a physician. And he looked at the denial and was like, this is weird. This doesn't make any sense. It's not right. I'm going to file the appeal. And then it went from there. Right. So it took somebody, obviously very highly educated, likely

financially able to incur whatever cost in the meantime while this claim was being appealed. And someone who definitely had resources to other specialists and experts within the health system, right? This is not a normal person, right? This is not everyday knowledge. This is not something we talk about chit chatting in the grocery checkout. People have to go to college and get certifications.

Host: 

Yeah, and there are different advocates. I think people don't realize that there are advocates who could help you just with the insurance piece or billing piece. And you seem like, like a lot of advocates, you come from a background of helping your own family. And so what kind of roles do you yourself kind of get involved with as an advocate? Are you coordinating between?

Medical professionals are you kind of navigating the health care system because of your finance background kind of curious What hats you wear for your clients?

Rebeka Acosta:

I love that question. When I first started A&J in 2021, I quickly realized the lack of knowledge of just health advocacy in general, in the general public. And I struggled to answer that question, what do you do? Because there's not a lot that I won't do or won't connect someone with if they need help. But now after almost two years, I've largely figured that I really do work in like three kind of bucket areas.

Host: 

Mm-hmm.

Rebeka Acosta: 

I am not one who does the insurance and finance billing type things. I know enough to get myself in trouble, but then I get really frustrated and I have a couple of really great advocacy colleagues across the country that do specialize in insurance and billing. And I've sent several patients their way and it's always a success story. So, oh, it's absolutely necessary. So for me, I really, the three buckets, I really kind of...

Host:

That's great. And the collaboration in this field is so important. Yeah.

Rebeka Acosta:

honed on or just health navigation. So like you said, just figuring out what's next. Someone has a diagnosis or maybe it's a new mom or a mom so pregnant that found out their kiddo was going to have a condition. What do we do? Where do I look? Don't do Google, right? So, and, you know, or saying, hey, your primary care doctor is like, you need to see XYZ specialist. Well, how do I know who's the right one for me? How do I know if...

Host: 

Uh huh.

Rebeka Acosta: 

XYZ specialist accepts my insurance policy. That kind of thing is very common. The second bucket is health advocacy. And not to say that I don't love all of it, but I really, this is the part that I really love because I can impart knowledge and empower patients and their family members to speak up for themselves, right? Really learn to have that advocate voice, to not accept no for an answer.

to not be afraid to question perceived authority in a physician or another care provider. And that's something that I do with children. My youngest client right now is six and my oldest client is in their late 50s, mid 50s. And sometimes I do the same exercises with both populations. So I love that because I know that those skills don't go away once you've learned them.

It's just about executing them and having that empowered knowledge. And that can change entire families, right? The six-year-old will tell her sisters and talk to her friends and teach her family when she's grown up. So I think that's really impactful. It's a slow moving game, but it's long-term very impactful. And the last bucket is health education. And this was another way for me to reach younger people, right?

Host: 

Mm-hmm.

Rebeka Acosta: 

We have so many adults and middle-aged adults, older adults that have life skills, right? But this health system is just, it's ever-changing and it's nothing that it was 20 years ago when they were younger. So they definitely need navigation and support. But I truly believe that you're never too young to learn about your own condition, about the health care system in general, how to ask questions and build a relationship with your doctor.

So that education piece is super important to me. And I think no matter one's development, cognitive level, physical ability, you can learn and participate in your healthcare in some fashion, right? So I recently started teaching, or holding some workshops for the special education department at a local high school, which has been absolutely phenomenal. I really do think I have way more fun than the students. I actually.

Host: 

That's always a great sign. That's a great thing.

Rebeka Acosta:

Right, I go back for the last couple of workshops in early May before school that's out here in Nevada, and I'm actually really sad that I won't get to see them over the summer. But so we really have just broken down big picture concepts into several 30, 40 minute like little digestible chunks, right? So these students are, some will be independent in their lives for their health care and some won't, and that level of dependency varies. So I've...

really enjoyed being able to explain big concepts like speaking up for yourself and advocating for yourself and where do I go next and into very digestible is like uh-huh what's the word I'm looking for here like very concrete basic steps like this is the foundation of your house and this is how we're going to put it together um so we've been doing that over the last six months exactly so when I was there last week we did a whole 30 minutes on going to the doctor. And that might sound pretty simple, like, okay, you're going to the doctor, go do what they say and move on. But we really together work through every single step. When you walk in the front door, what happens? What can you expect? What is your responsibility? What are you to ask for or expect from the person that you're gonna meet? What is the nurse going to talk to you about? Why is it important that they're taking your vitals and weighing you and measuring your height?

You know, getting to the part where they're in the room with the doctor is actually the last part, right? So just all that prep and understanding what's going on behind the scenes, I think, is so critical, especially for people who may or may not be independent in their health care and may, depending on their disability, be vulnerable to other people taking advantage of them. I really feel strongly that it's super important that these young people get this opportunity.

Host:

What is A and J? So you mentioned healthcare navigation, healthcare advocacy, and healthcare education. I think those are three beautiful fields and you kind of summed it up really well. What does A and J focus on the most? Is it one of those or is it an overarching kind of?

Rebeka Acosta: 

I think when people first contact me, they're largely saying, I need help navigating this. I just, it's just too much. But when we really get into the nitty gritty and I find out what their family situation is or their personal situation, what needs are really need to be prioritized and dealt with first, it's often a combination of all three. Yeah.

Host:

makes sense. You mentioned exercises that you would do with a six-year-old or a 60-year-old. Can you walk me through what one of those exercises might sound like or look like?

Rebeka Acosta:

Yeah, sure. They're often filled with laughter and giggles as role play type things usually are. With the little kids, it's usually lots of fun and games. I almost have to convince them that they're not really learning something new and challenging or scary, that it's just fun part of life. And this is some cool thing you get to practice next time. So for example, my little six-year-old patient, we were really focusing on her being able to describe.

Host: 

Ha ha.

Rebeka Acosta: 

Feelings and sensations in her body instead of I'm tired. It hurts. I don't want to this is You know, which is not wrong Right, it's a totally normal developmental concern But when you have a child that has chronic and long-term and lifelong illness

Host: 

Yeah. I have four kids. That is a chronic problem. I don't feel good. What do you mean? I just don't feel good. It's like, what? Yeah.

Rebeka Acosta: 

They have to, in a way, grow up a little faster and be able to advocate for themselves, whether that's in school and their other parts of their community and their family. To have those skills to be able to accurately describe what's going on is the precursor to being able to say to your physician, hey, in the last month, I have been more tired. In the last six months since I've seen you, I've fallen three times or I have headaches every week.

Just that awareness and being able to label and name things, especially in young children is really, really important. So sometimes I do like a stoplight thing. We'll make a big poster and make an art project out of it. Like in the red stoplight, these are things that are hard for me all the time, no matter what. And then the yellow or kind of the in-betweens. If I'm tired, maybe it's a little hard, but if it's in the morning, maybe I can do it fine. And then the greens are something that I can do all the time by myself and they're very easy.

And it sounds like a very simple exercise, but in the beginning with my six year old, that was very difficult, right? It took a couple of months of really focused, being focused on naming feelings in your body and that type of thing and thinking through your typical day. You know, a six year old doesn't, you know, come home at the end of the day and be like, oh, what a day. I started off with breakfast and then I went to school. They don't analyze everything like adults would.

So that's something that she really had to learn before she normally would. But now she has her little poster and it's in her room. She knows that this is her thing. She can add to it and take away anytime. Her siblings aren't allowed to touch it, right? Mom or dad, or family can't add to it or take away unless she proves. So it's kind of given her ownership of her body, right? And teaching that very important lesson that you're the expert here. No person on the planet besides you knows what's going on in your body. Yeah.

Host: 

Yeah. You know, the, it's funny, you're right. I mean, I, I've had my own medical kind of issues where in my thirties, someone said, well, why don't you keep track of when you have this pain? And I was like, Oh, you know, it's like, I guess I should, maybe I'll start a Google calendar or something. And then when you do it, you're like, Oh, this is happening a lot more often than I realized, you know, it's part of being that like,

Rebeka Acosta: 

Yes, absolutely. And I'm guilty of that too. Well, don't worry because I think a lot of health advocates have that same issue. We're not always the best patients. I'm right in front of that in that line. So, but going back to the, when you asked about the exercises for my older patient, I did very, very similar things. But we really broke down the concept of focusing on very micro things, right? My legs hurt all the time. Well, what does all the time mean? Is that eight hours a day? Do they hurt as soon as you wake up? Do they hurt only after you've walked downstairs in your home? And that's not, unless you have somebody prompting you, that's not, like you said, it's not something that naturally you think of. But it can make a big difference in how we are sharing information with their medical team because of this knowledge will be able to provide or suggest Especially when we have chronic illness people get used to just feeling that way. That's their normal, right? I've had so many people tell me well, this is just my normal. I'm in pain at a level six. It's just my normal Well, that's terrible. I can't imagine when I have you know, a small headache, you know, I'm like, oh, this is terrible I can't imagine people who have chronic migraines or pain in other parts of their body all the time. That shouldn't have to be your normal, right? So the exercises are similar. The questions might be more in depth and obviously more adult for the older patients, but the point of it is always the same, is right, is to really focus on every tiny little thing so we can report the most, the most information, right? The quantity of information that they're getting to their medical team. So, you know.

Host: 

Yeah, better data, essentially.

Rebeka Acosta: 

Providers can make right exactly right my husband is a data person and so you know if you give him one point of data He'll be like well, that's worthless, but if you give him ten points of data Okay, now we're cooking right so we can we can make decisions so in the time of You know going to the doctors and you get maybe six or eight minutes with them in the room and they come in They're rushing in like hey, how's it going and they're on their tablet or their computer entering stuff…It's jarring and if you're not ready to say these are what's going on and this is what I want to ask for If you're not ready, you know, they'll turn around and be gone before you've even caught your breath Um, so having those data points if you will and having a plan is is key.

Host: 

You mentioned legislation previously, and that hasn't come up yet, but I think it's a really important point. I think as a healthcare advocate, it might seem like an obvious question, but now when you go vote, is that one of your primary things you're looking for in Canada? It's like, hey, this is a real issue for me.

Rebeka Acosta: 

Yeah, absolutely. I think it's always been there in me. My mom is a social worker and teacher, so I was raised with that perspective and access to seeing things that most young kids and teenagers don't see growing up. But I'm definitely paying attention, especially what's going on here in our state of Nevada and at the federal level.

Host: 

Can you give me an example of a piece of legislation you remember being like either shocking or where you were like this needs to get through or you were super passionate about it?

Rebeka Acosta: 

Absolutely, it was a couple weeks ago and it was actually one of my current clients who is an amazing advocate for all things health care and and then legislation and He was going to be on Calling into a legislative session to give his like, you know, 90 second Opinion, right? And so I of course tuned in in my car listening and I wanted to hear how it went and I knew a little bit about this particular legislation. It boils down to that we need to ensure that people in our state living with disabilities have all of the same access and rights as people in our state without disabilities is essentially what the law was going to be. And I had to pull over the car, to be honest, because I was so angry that this was even a topic of discussion. And so there was many, many health

related organizations calling in in their support. All of the state representatives there were all in support. And then there were probably three or four individuals physically there at the Capitol who were there to voice their opposition. Thank you to this. And they did not give a reason. They stated their name and that they were in opposition and that is it.

It was like, it's 2023. Why are we having this discussion? And then it passed overwhelmingly with the majority. But for a state like Nevada, where we only are in legislation every other year for a couple of months, the fact that we are spending time, even debating or allowing for a debate on whether a certain group of citizens should have the same right as the other, blows me away. But it has large repercussions in our state for people with disabilities and their access to all types of programs and assistance. So it is absolutely critically important. But then again, you shake your head and like, how did we get here?

Host: 

Well, you know, that leads me to a really interesting point. And if it's too personal, I understand. But being an advocate, and I think you're so involved and you have a nonprofit and you have it even in your own family.

It's a bit of an emotional roller coaster. And so as an advocate, how do you balance that? How do you actually be an advocate and have a normal life and kind of unplug when you need to? Or is that a challenge of the job? And what techniques have you found useful for yourself?

Rebeka Acosta:

That is a great question and I will say the first probably three or four or five months of ANJ I really struggled and that was a huge learning curve that I expected but didn't expect I guess and I had to really dig deep for the right strategies and things to do to allow myself to still give 100% to my clients and their families and the community but like you said be able to come home and not be bogged down by...

Host:

Mm-hmm.

Rebeka Acosta: 

the sadness of the things and the frustration of the state of healthcare. So I'm very open with advocate colleagues and families and clients and community organizations I work with. Like it's a challenge, like I'm not gonna lie. It's definitely a roller coaster of emotions. If it doesn't affect you, I really wonder what's going on in there. If you're human and the things that you see and hear and learn about. 

It's just gut wrenching sometimes. So I definitely have, you know, advocacy colleagues across the country where we can vent about our frustrations in the system. And, you know, I have X, Y, Z situation and I've done this, but I'm at a loss. Do you have, have you come across something similar? What do you recommend? And then to be totally transparent, once a month, I'm sitting in my counselor's office and just to get things off my chest and.

Sometimes I don't talk about work at all, and it's been okay, and then other times I'm just so, like, the humanity of it all is just so overwhelming, and I have to have that outlet, right? I can't, I don't have a job where I can come home and vent to my spouse or my neighbor. So I have to maintain my client's privacy and their family's at all times, and I take that very, very seriously. So I have to be very careful when I'm sharing anything or giving examples of situations. And so my once a month counseling appointment has been a godsend for.

Host: 

Yeah, and I appreciate that transparency and I advocate for people to get their own counselor as needed. You know, it's definitely, I think it's probably saved my own life even at different times of my life and it's opened me to the world of healthcare in general in different ways. Yeah, it's really important.

Rebeka Acosta:

Yeah, yeah, It has it has allowed me to really be more human with the people that I work with, right? Like, yes, I am working with you and I'm helping guide you in providing service or recommendations, support, but I'm also a human and you're a human and at the end of the day, you're in a place of challenge or difficulty and you need help from another human. Like if I don't

treat you and see you as such, then we're really not gonna get very far. So I really give my all. Like when I'm with someone and helping them through a situation, like if it's sad and they're crying, I might cry, right? Like this is just an awful situation, right? We gotta have real conversations, right? I have several clients that have experienced extreme prejudice and racism in the health system. And the very first time I met them, I sat down on the couch in their living room and I said it out loud before they could.

Host: 

Right, right. The empathy is real, yeah, it's very real.

Rebeka Acosta:

And they have told me since that they felt so relieved and seen and heard that somebody who does not look like them validated what their experience must have been. And then I learned the details of everything and it's even worse, right? And so just that alone sometimes just it goes so far, right? These patients and their families are already under so much stress. It is really a full-time job to be.

Host: 

validated what they were. Yeah, absolutely.

Rebeka Acosta: 

living with any kind of chronic illness or a disability, it is a full-time job to manage the administrative part of that, right? Between your insurance and bills and scheduling appointments, authorizations for whichever medications, it's just… Right, it is absolutely a full-time job. And so the stress alone, just having another human that wants to treat you as a human is awesome.

Host: 

Rebecca, thank you so much for everything you do and thanks for coming on and sharing all this beautiful, beautiful information and kind of peeling back the curtain on what you do. I mean, I think the fact that you were able to kind of compartmentalize and explain the different buckets you work in is so helpful in giving examples of the exercises you do and how you teach people. I mean, I have things that I can go now and feel I can talk to my seven-year-old about.

Rebeka Acosta:

Oh, thank you. That's awesome. Yes, we are a nonprofit and we provide all of our programs and services to patients and families and our fellow community organizations at no charge, right? So a big part of my job as the executive director is fundraising and finding those funding sources. So if there's anybody out there that wants to help us win the lottery, you know, that would be great. But no, all the information's on our website. It's heartforadvocacy.com and that's the number four.

Host:

Rebecca, thank you so much. And I'll be sure to post the links in the show notes as well, and I wish you the best, and keep doing what you're doing. We need more of you, that's for sure. Thank you.

Rebeka Acosta: 

Thank you. Thank you so much. I appreciate it.