Episode #111: Dr. Stella Safo
Please note: This podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a licensed or registered healthcare professional about your individual condition and circumstance.
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In a stigmatized world that often overlooks the true nature of chronic illness, Dr. Stella Safo is on a journey to improve healthcare systems so that everyone can receive equitable care.
Dr. Safo is a board-certified HIV primary care physician and founder of Just Equity for Health. With years of experience in clinical transformation and healthcare redesign, Dr. Safo is dedicated to using advocacy, education, and care model design to ensure equitable care delivery across all sectors of medicine.
Having always felt deeply connected to people and their stories, Dr. Safo knew from a young age that she wanted to make a difference. Her dedication to the HIV community stems from her passion for social justice and equity within healthcare.
Dr. Safo highlights the stigmas that still surround HIV and chronic illness and how it negatively affects the well-being of those who are already suffering. She shares how people with chronic diseases often feel the pressure to fake wellness, hide, or feel shame for the parts that aren’t always invisible.
But through her work at Just Equity for Health and as a founding member of various organizations, including Equity Now at Mount Sinai and the Coalition to Advance Antiracism in Medicine, Dr. Safo is on a mission to make healthcare accessible for all, regardless of race, gender, or socio-economic status.
“We have an opportunity to change and redesign how we are taking care of people.”
Reasons to Listen:
Learn more about Dr. Safo’s connection to healthcare and the HIV community
Understand the stigmas that surround HIV and why those who are diagnosed often feel an incredible amount of shame
Learn the similarities and differences between HIV and other invisible illnesses
Learn more about Just Equity for Health - what it is, what it does, and what they’ve achieved so far
Learn how cultural backlash affects equitable healthcare and what you can do to get involved
“It’s knowing in my spirit that humans are good, and humans are kind, and that we can treat each other better. We can hold each other and nurture each other and create a world that is more full of joy, peace, and love.”
About Dr. Stella Safo:
Dr. Stella Safo is a board-certified HIV primary care physician, public health advocate, and the founder of Just Equity for Health, a healthcare improvement company that uses advocacy, education, and care model design to ensure equitable care delivery across all sectors of medicine. Dr. Safo has experience in clinical transformation and health care redesign at Mount Sinai Health System and Premier Inc, where she respectively serves as an Assistant Professor and Strategic Advisor. In addition to her commitment to population health and care model design, Dr. Safo is dedicated to equity within health care. She is a founding member of several organizations dedicated to gender and racial equity and to civic engagement in medicine, including Equity Now at Mount Sinai, Civic Health Alliance, and the Coalition to Advance Antiracism in Medicine. In addition to an investment in projects around equitable care model design and a commitment to social justice work, Dr. Safo also provides clinical care to patients in New York. Her work has been featured in various academic and popular media, including CNN and MSNBC.
Website: https://justequityforhealth.com/
LinkedIn: https://www.linkedin.com/company/just-equity-for-health/
Twitter: https://twitter.com/just_equity
“You are so much more than your illness.”
Support for this episode comes from Credo. Credo was founded in 2015 in San Francisco. Credo currently operates a robust online business, along with 12 stores across the country. The company’s trailblazing brand standard, The Credo Clean Standard, is actively building a cleaner, more sustainable, more ethical beauty industry. Credo’s owned brand portfolio includes Exa Beauty, Follain, and EleVen by Venus Williams SPF. Visit bit.ly/madevisiblecredo to start shopping.
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Harper: [00:00:00] Made visible, helps people with invisible illnesses feel seen and heard. It provides a platform for people who seem fine but aren't to share their experiences. It also helps to create a new awareness of how we can be sensitive and supportive to those with invisible illnesses.
Please note this podcast is intended to provide information and education and is not intended to provide you with a diagnosis or treatment advice. You should consult with a license or registered healthcare professional about your individual condition and circumstance. Hey guys. Welcome to another episode of Made Visible.
I'm your host, Harper Spiro, and I'm so glad you tuned in On today's episode, I spoke with Dr. Stella Sao, a board certified h I v, primary care physician, and the founder of Just Equity for Health. We spoke about advocacy, [00:01:00] public health, healthcare redesign, and equity. Welcome,
Dr. Stella Safo: Stella. I'm so happy to be here.
Thanks for having me. Har.
Harper: Absolutely. So let's start. Who are you, where are you from and what do you.
Dr. Stella Safo: I love that question. Who am I? Uh, I often answer that question with saying that I'm a physician, um, but I'm gonna reframe it this time and say that I'm a new mom to a nine month old. And so I'm learning how to be a parent, um, a little bit older in life.
I am an H I V primary care physician, and I have a panel of patients that I see in New York City. I live in Brooklyn, New York. And I'm also someone who thinks about healthcare design. So I have a healthcare improvement company called Just Equity for Health, and I think about how we create more equitable care models for patients that need them.
So
Harper: much good stuff, and I like your reframe. That's an interesting one. I'm sure that's been a transition for you to start leading into and going, okay, I have this other identity and title [00:02:00] attached to my name. These.
Dr. Stella Safo: For sure. I look at her sometimes and I'm like, I'm someone's mom. It's wild, and I love it.
Amazing.
Harper: So where did your interest in health begin? .
Dr. Stella Safo: So I always knew that I was going to do one of two things. I was either gonna be a journalist or I was gonna be a doctor, and that was because I love people's stories. I love being able to sit with someone and get the kind of more intimate details of what they're thinking, what they're struggling with, what makes them feel good, what makes them feel bad.
And I feel like you could do that pretty well as a reporter, as someone who's collecting stories, or you could do it as a doctor because the way that we help to diagnose people and to help them. Better is by understanding what made them ill in the first place. And I'm glad that I chose the doctor path.
I did so in part because my mom is a pediatrician and so I saw her go into the community and take care of her kids as she calls them. Um, and she just loved her patients, felt like they were all like her kids or her grandkids. And I wanted that kind of proximity to doing true community healthcare. [00:03:00] Um, so when I went to med school, I decided that I wanted to do primary care and I decided that I wanted to work specifically with H HIV V patients.
But for me, it's always been about the stories.
Harper: I love that concept and I'm so curious. Like I, I feel like I'd love to hear what other doctors would say in answering that question because I don't think that it, the answer would be that I feel like there's so many doctors that are in there for the prestige and the money.
Mm-hmm. and like other reasons. I'm not saying those are bad reasons, but there's something to be said about the storytelling component that also. How great of a doctor you must be because you genuinely care about your patients. And the fact that you have your mom as a role model in that sense is huge.
So how did you get dedicated to the H I V community? Like why was that? The route that you chose to go?
Dr. Stella Safo: So when I was growing up, I grew up in the nineties. I was a nineties baby, born in the eighties, grew up in the nineties. Um, and at that time H I V was still considered a disease that had [00:04:00] a ton of stigma associated with it, and it was a disease that people would get and then not do very well, you know, from, and.
Very quickly in the mid nineties, that changed when we got triple therapy. But globally in my family's from Ghana, that didn't change. I would visit in Ghana and I would see people in the infectious disease ward dying of aids, and I knew, uh, this was during my medical school years. I knew that with proper antiretrovirals they would be fine.
And so it made me think a lot about the inequities in our healthcare. Who gets medication, who doesn't. And I did a lot of teaching around H I V and H I V prevention and one of the things that was so kind of present to me was people walking around feeling like, well, I don't have to fear H I V cuz I can't see it.
When it gets to the stage of aids, then yes, I'll take it seriously and I'll be afraid of it. But if the person looks healthy, like why are you telling me that they have this thing that can maybe harm me? And so it really made me interested in kind of how we perceive illness and how we think about who is sick, who isn't sick.
That threat to us and h i [00:05:00] v is a disease that, you know, for me, now that I'm treating it, it's a disease that really makes you think about where the inequities fall in our society, right? It's just the reality that more people who identify as black or Latinx are at risk of getting H I v in part because of issues around.
Access to prevention because of issues around being placed in high risk behaviors like having to engage in transactional sex and other things like being, uh, incarcerated or other factors that just happened to certain populations more than others. So when I started thinking about H I V as a, as a.
Disease. I didn't realize how much it would really bring up issues around equity. And now that I think a lot about health systems design and equity, H I V feels like exactly the right disease for me because those issues are so present and they're present at the surface of who gets infected, who does well when they're infected, and who essentially dies of a disease that should now be able to be fully treated.
Wow,
Harper: that's such a good point. And really thinking about the invisible side of things, how do you think it differs or is similar to other [00:06:00] invisible illness?
Dr. Stella Safo: I think with H I V, the main thing that's a little different is that there's a sense of you did it to yourself that is so present that people can't kind of get past it.
To have the empathy that's needed. And as I said, the reasons that people get h i v are so varied and are often really related to structural issues in our society and systemic issues in our society. Then direct choices that they themselves have made. And so that's the big difference, right? If, if someone says, I have H I V, or I got H I V, or I've been exposed to H I V, it feels like.
Automatic judgment. Very different than if someone says I have cystic fibrosis, or another condition they may not see them kind of wearing on their physical person that, you know, there isn't that immediate inclination to place blame and to maybe have some stigma. . There's
Harper: a show that I recently discovered a friend of mine referenced called Merley that I watched a few weeks ago that was all about kids in Barcelona, I believe it was in their early twenties and teens, and one of them being h i V positive.
And I [00:07:00] gotta be honest with you, it was the first time that I really ever felt like I had exposure to learning about it and feeling the stigma. And how much he felt so ashamed of navigating it and while aspects of it did feel like, okay, living with invisible illness. I think this concept of what you're saying of blaming yourself and feeling like you did something wrong is such an unfortunate aspect of, uh, living with H I v.
What else is there for people who are not familiar with H I v, haven't been affected or aren't educated on H I v, what are those other stigmas that are associated with.
Dr. Stella Safo: I think the main stigma is a fear of you as a contagion, you as a source of disease that can infect others. I had a patient who recently was just so sweet and so kind, and brought a stuffed animal for me to give to my daughter, and he kept saying, you know, Dr.
Swell, I kept it clean. I kept it clean. I, I didn't touch it. I kept it clean. I wore gloves when I touched it, and [00:08:00] at first I wasn't really reacting to that. I was like, oh, don't worry, it's fine. You know, she'll be okay. And afterwards, when I was thinking about it, I thought, you know, this is a person who contracted HIV's in the eighties and was probably told in no uncertain terms that he was someone who was considered.
Defiled and dirty and, and, and a transmitter of disease. Again, none of these things that are true in the way that it was said to him. And so even now, years later, as he's sharing something so sweet with his physician, he has internalized that message that he, he carries disease. Um, and so that stigma is something that I think is.
It's added burden because you're not only dealing with an invisible illness where people don't know, and whereas in some ways with certain invisible illnesses, it's helpful for people to know because they can understand and help you. With H I V. It's really a two-sided thing. It may be helpful for people to know, especially your loved ones, but there's also fear of people knowing.
because you may start to be seen as someone who transmits disease as this patient felt. And that's just something that's very unique to the way that H I [00:09:00] V was framed, discussed in the media. Understood. And one question that I've actually been thinking of for myself a little bit is, has a fear of contagion and transmissible factors around.
H I V. Has that diminished a little bit with Covid because everyone essentially got covid. Covid has been really rampant and people are. More comfortable, I guess I will say, with getting sick off of each other, with, you know, the loss of mask mandates and some of the other things that we're seeing in, in the US at least.
And, and it makes me curious if people, if that kind of loss of fear of contagion around Covid could transmit to other disease states like H I V. What an
Harper: interesting question. What's your assumption? What's your answer at the moment for
Dr. Stella Safo: that? I don't think so because I think part of what drives the stigmatization of people with h I V is that it's, it tends to be the other, it tends to be people who don't look like the majority of the US population.
That's, I think, 60% white. It tends to be people who have a, um, a lifestyle that is different [00:10:00] than the, you know, cyst heterosexual lifestyle that many people subscribe to. Easy to other people. When you are other people, it doesn't feel like as present for you, which again, was very different for Covid Covid.
Everybody essentially at some point has been exposed or has gotten it, and so. There was a natural experiment that happened around this Harper with, um, the disease formerly known as monkeypox, now known as M P X or ox, where PAC came and people were trying to understand, should I be afraid of this? Kind of on the general level, is everyone going to get this or is this just a disease of those people, those people being same gender loving couples, being black and brown people.
And once it was clear that that was the case, the kind of stigmatizing that we heard and saw around OX returned in the way that I think people think about h I. So, so, you know, to answer my own question, my hypothesis that has Covid made us more comfortable and more tolerant, you know, Around issues of stigma with diseases like H I V?
I don't know, and I don't think so, is my inclination because of [00:11:00] the reality that H I V and certain diseases like PAC really are targeting certain groups that are seen as other by the majority of the population.
Harper: This sounds like research you need to really dig into. I gotta tell you, because , it's really no, it's, it's a really interesting concept that, like, as an H I V doctor, it's something that is very, you know, present in your world and thinking about how these two things correlate.
You know, one of the things I'm thinking about here is. Speaking of the stigmas, I mean, hearing your patient's story is like so heartbreaking to hear that he, you know, felt the need to say to you like it's sterile and all of that. Do you think the stigmas have remained the same since the eighties, or do you think that things have gotten better over time?
Dr. Stella Safo: I do think things have gotten better over time. I think that we've gotten a little bit smarter about ways that H I V is transmitted, because in the eighties we were afraid that things like spitting, kissing, hugging, and if those of us that are a little older, remember Princess Diana was really like, [00:12:00] Beloved and famous for hugging, uh, patients living with H I V because at that time, most people, certainly people with privilege and wealth and fame did not even touch individuals that had H I V.
So if you think about that frame, that's very different now. I think the average person could say that, you know, it isn't spread in certain ways that we thought it may be spread. Certainly most people still have questions like I covered the h I V post-exposure prophylaxis line where if you've had an exposure to bodily fluids, you can call us and we'll get you started on antiretrovirals.
And I always get questions, or not always, but I, I will intermittently get questions that are like, I sat on a toilet seat and I had a cut. Do you think I could get h i v? You know, so, so it's still there, but it's not there nearly as much. Um, however, and I think that this is really unfortunate, the laws.
Now, I think it's over 30 states. It might be 35 states. There's still H i V criminalization laws that criminalize things like spitting. If you're someone who has H I V criminalizes, just very basic things that we know do not transmit [00:13:00] this virus. And those are still present. They were set in the eighties and nineties and they're still present today in part because legislation just hasn't caught up to the science and it's.
Advocating for that to change because it impacts all of us ultimately, right? If there's a D, you know, if there's a law on the books to prevent you from spitting with H I V, why couldn't it be extended to spitting with covid? Right? And so I think that there's just some catching up that we have to do, certainly in the policy and legislative world to acknowledge that we know more and therefore our, our fears and our stigmas have changed.
Harper: Yeah, that makes sense. So you said that being an H I V doctor has shown you that we learn to fake wellness in a world where more of a suffer from chronic disease than we let on. Can you talk a little bit more about that?
Dr. Stella Safo: Yeah. I think that one of the things that I found really fascinating about being a H I V provider is that.
Many people before they got sick were very healthy young adults. They were individuals who never really had to go to the [00:14:00] doctor who were just fine. They took their health for granted. And one of the things that happens once you become H I V positive is you have to see a clinician every three to six months.
Um, and you have to check in and make sure that your antiretrovirals work, you have to take your medication. Most people every day, and you have to do certain things to kind of make sure that you keep yourself okay and that you keep others safe from getting the virus. And so there's, there's actions that you take that let you know that yes, you do have a disease and you are sick.
However, as I mentioned, many individuals are young or we're young when they contract. This disease. And so that transition, that mental transition from I am someone who's totally healthy and had nothing that I had to worry about illness wise, I'm someone who has a chronic illness that I'm reminded of all the time.
I've definitely seen and felt like I've come to understand the duality of living in those two spaces and the the ways in which for some people it can actually create a sense of denial [00:15:00] and in order to feel well, because they look well, everyone still treats them just as they've treated them before. , it could actually lead to certain health harming behaviors.
And so I have patients who have a really hard time taking their H I V medicines every day cuz it reminds 'em that they have h I v and really and truly nothing else in their life does. So I think that that's what I was getting at with that statement of just the ways in which we can pass and the desire to pass and, uh, what passing ends up doing to us, to many of us, you know, many individuals who have a chronic illness.
Is that it? oftentimes just kind of harms you and it harms your ability to take the best care of yourself. And it certainly, I think, doesn't do a service to the larger society where more people than we know are dealing with chronic illnesses, are dealing with ailments that they don't speak to or, you know, it isn't identified on their, on their person.
And so I think that there's this duality that individuals with H I V certainly deal with that probably relates to how many [00:16:00] other individuals approach the world when they have an invisible chronic illness as. Yeah, you
Harper: bring up such a good point about that, and I feel like there's probably other people and people with other conditions who are avoiding taking their medications or doing certain tests because it puts them in that category and reminds them that they fall under that invisible illness category that they don't wanna be defined by.
Mm-hmm. , I, I hadn't thought about that concept, but I, I really, I really get that and hear that. You mentioned the term healthcare redesign. Can you talk a little bit more about what that means and the work that you've. .
Dr. Stella Safo: So healthcare redesign is, uh, this growing movement. It's kind of existed in healthcare, but it's been called different things.
So quality improvement is one of the things that I think people have kind of heard, implementation science, and the whole idea is that it comes from this move in the US healthcare system to really do a better job of using different technologies, protocols, and tools to deliver better healthcare at costs.[00:17:00]
I think most people don't realize, but the US pays a tremendous amount of money as part of our G D P, tremendous amount of money for healthcare. And that amount is just increasing exponentially. But what's insane about it is that we actually don't get better health outcomes. We track behind other high income countries in terms of life expectancy and just basic health outcomes for, um, acute and chronic conditions.
And so we're paying more in getting. So in 2010, the Affordable Care Act was one of the pieces of legislation that really tried to curb that trend of paying more and getting less, um, by saying, let's really think about value in healthcare. Let's think about value-based medicine. Let's think about how we take care of populations and focus on prevention or being reactive and taking care of things that happen when people are sick.
Healthcare, redesign, care model, design, practice transformation. These are all terms that fall under the population health umbrella that signifies when you hear it, it signifies that the healthcare system, [00:18:00] and normally it's health centers or hospitals are trying to do things differently. They're trying to pay their staff differently.
They're trying to design a. The way that they actually deliver you care for things like your diabetes, your hypertension, management of heart attacks, design them in the way that really focuses on prevention and design them in a way that really focuses on taking care of you as a whole person so that you, you don't just keep bouncing back and forth into the healthcare system.
And so there's a big focus on substance abuse and substance use disorders because behavioral problems. All healthcare issues worse. And so in the work that I do, and kind of the reason why I talk about this space a lot is that what I've just described to you is in healthcare, we have an opportunity to change and redesign how we are taking care of people, right?
And that's been given to us by this move towards population health. And with that opportunity, how are we doing it differently? How are we doing it so that we don't get the same outcomes that we've gotten where certain populations, especially, uh, black Americans, Latinx Americans, and other historically marginalized groups, [00:19:00] Continue to have worse health outcomes and we're not addressing that.
So my whole kind of desire now is to say, if we have to redesign the healthcare system anyway, how do we do it? So we take better care of all populations and, and really think about equity within that work. I
Harper: mean, it's incredible and so beyond necessary to have work done like this, this work being done.
But I wonder how receptive the. Big pharma and massive hospitals and government funded N I H and stuff like that. Like how receptive are they to change like this?
Dr. Stella Safo: It's such a good question. I love how your mind is working around this because it's like, doesn't it sound like a great idea? All of us can have better healthcare and we can all just be, you know, good going forward and then you're like, who wouldn't want this
So yes, I think it's, I think it's a really smart and perceptive question. I think certainly. it is challenged or is [00:20:00] challenging for a few different actors within the healthcare sphere. Life science companies like pharmaceutical companies, biotech companies, often want to know like, is this gonna impact my bottom line?
Because if you're really thinking about saving costs, which is what I've described to you, you're gonna go and look at how much medications cost. There are some HIV medicines that are amazing. You take 'em every two months, they keep your viral load low. Patients, like I described to you, who are afraid of taking medicines every day or don't wanna take medicines every day, or patients who can't get into a healthcare facility all the time to get medicines all the time.
These are the patients that benefit from this. But this medicine costs $48,000 a year per patient. It's just not sustainable and. We can't have healthcare delivery when so many of the things that go into keeping us safe, like our medications and how much it costs to get certain procedures are so incredibly high.
So the folks who are thinking about challenging this are those who are currently benefiting from our system now. And honestly, that's probably. , all of us, right? It's health systems, it's life science companies, it's people who have privilege and have access to [00:21:00] insurance who are like, well, I don't wanna change anything cuz I'm, I'm good, right?
Because it does require us to sacrifice and to think about how we've designed things a little bit differently, um, to really make sure that we're sharing the resources. And I'm not talking about socialism. I'm just talking about really thinking about why are we allowing just some folks to get access to a $48,000 year medication.
When it leaves all these other folks behind, how do we make this system more equitable? How do we redesign this system to actually make more sense for all of us? And so that question will immediately ruffle some feathers, but I think we have to keep asking it.
Harper: Yeah, I agree. And that's where I'm really inspired by the work that someone like, uh, mark Cuban is doing with his newish company, cost plus drugs, who's really determined to make drugs more affordable for more people, and it's so, so, so important.
So you mentioned at the top of the call your company just equity for health. Can you talk more about what it is and what you do and what made you start. [00:22:00] Sure.
Dr. Stella Safo: So I started just equity for health in the summer of 2020, which I feel like is a summer that seared into all of our brains. We were in the thick of Covid and we had a lot of conversations about race within this country with the murders of George Floyd, Breonna Taylor and Ahmad Arbery, and we were.
I think at a place as a collective where we were really saying how do we do things differently? And for me, I had worked, you know, I had trained, I trained at Harvard, I went to residency in Montefiore. I did my early, uh, clinical years, uh, within a health system on Sinai. And then I'd went to work for a healthcare improvement company premiere.
So I, I was kind of in the institutions and I just kept thinking, what's missing? From the work that I'm doing around practice redesign is the voice of the end users, the voice of frontline staff, like doctors and nurses and front desk folks. It's those voices, but most importantly, the voices of the community members and the patients that actually use the tools and the [00:23:00] systems that that we were designing.
And so it was very, very clear to me. That was absolutely a vital way to move towards creating healthcare systems that are more fair to all populations. It was to bring in the voices of those who would be utilizing it. So I created just equity for health the next year and. The, the kind of central focus that it has is creating care models for historically marginalized populations, and I do that in three ways.
I do it through advocacy, education, and then actually designing the care models. And the reason why I chose those three things is that you can try to change health systems to. Design and deliver care in a different way. But if you don't teach why it's important, then you're going to get exactly your question, Harper of folks who are resisting and folks who are pushing back.
So I do a lot of teaching with different groups and clients and keynotes and seminars and learning workshops to really kind of implement this idea that equity is the way that all of us benefit from healthcare. Um, and then I do advocacy work because [00:24:00] things like impacting legislation, things like organizing groups are really important.
When you're trying to change big systems like healthcare delivery, cuz you're going to get resistance. And so I work around civic engagement. I work in gender and racial equity groups to really bring together the kind of momentum behind how we're going to not just change things, but make sure that these changes are kept and really held going forward and built upon going forward.
So I didn't. You know, looking around me, I didn't see any other groups that was doing the work in this way, and so it felt important for me to kind of stake my claim and say, I think you need three parts to really. Improve upon healthcare. And so those are the three things that just equity for health really thinks about, again, education, advocacy and care model design.
And, and it has been a challenge cuz anytime you build something it's always really hard. But I have been so inspired by seeing the movement, the efforts, the energy, bit by bit that's coming together. And I, I do think that we are really building something.
Harper: Oh, I love [00:25:00] hearing that. I remember when you launched and was like, wow, this is, she is onto something here.
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Now back to the show. So speaking of just equity for health, and going back to your initial comment around storytelling and your love of storytelling and the reason why you got into medicine being related to storytelling. What are some stories you can share from your experience in building this business and the people that you're working with in the last few years and like the response, you know, the re the response you're getting to the work you're doing.
Dr. Stella Safo: So one story that I think about, and I think about it often because whenever I'm having those days where it's like, this work is too hard, I just wanna, you know, mother, my child, and mind my own business. I'll think about a patient of mine who I had, who was a young man who had end-stage kidney disease and he had had it for many years.
and basically that just means that your kidneys don't work, so you need dialysis. And this young man wanted to live his life. He was in his thirties, like, like [00:27:00] all of us. He wanted to not be tied to, you know, having to get his dialysis all the time. He, he looked and felt healthy apart from his N stage kidney disease.
And so he made the decision to move from New York down to, I believe it was Florida, to live his life somewhere else and to just kind of, you know, explore the world. And when he got to Florida, it became very clear to him that he wasn't going to get the services that he needed, that it was very, very complicated to be able to set up his healthcare there.
and he had been on the transplant list for years, but it was very difficult for him to kind of do all the things that had to be done, in part because he came from a very, very poor family. It was hard to get himself and advocate for himself in the ways that he needed to. Um, and so he moved from Florida, came back to New York, and had to reestablish care.
And had to get, you know, his social workers on board, come back and see his physician who was knee and kind of get himself back into care. And in doing that process, he missed, uh, his dialysis. And when you missed your dialysis at, at your dialysis [00:28:00] center, you need to often go to the emergency room to get eent dialysis.
And so he woke up one morning, did not feel well, was on his way to the emergency room with his mom, and he coded in the cabin, he died. And I think of that story, not infrequent. and it's gonna make me kind of tearful thinking about it now because this young black man shouldn't have died from what really is about systems failures.
You know, the, the failure of us to have comprehensive healthcare in all of our states, the failure for us to. Really partner with people who are the most marginalized in our societies, to be able to, to hear them and, and help them, um, and have them really help themselves. There isn't anything altruistic about this.
People want to help themselves. And then there was a failure of capturing his story when he was gone, right? Like no one did a review of how the systems failed. This person, he just was gone and that was it. And he is remembered by his loved ones and he is remembered by me, but I, I think of him because I think.
How do [00:29:00] we build this better? That question just drives me and, and really keeps me going. And so the how we build it better. There's a few ways that I've seen in my work with just equity for health. During the pandemic, one of the groups that I got involved with really did a magnificent job of changing who the healthcare delivery messengers were.
As you probably can understand and appreciate, people are nervous about healthcare systems. People are nervous about doctors, so some people, people weren't doing what they had to do to keep themselves safe from covid or they weren't getting vaccinated. Or they weren't kind of engaging around Covid care.
And so this organization that had members throughout the US pull together folks from the community, from their local communities, and I would join them along with a couple of other doctors and do trainings around just basic, like, what is it we're talking about? Why is this important? How do you answer questions when people wanna ask you, you know, different questions about the vaccine or other parts of Covid Care.
And then they were deployed into their community to really be able to, [00:30:00] um, help. People that they, you know, live next to their neighbors, uh, have the, the knowledge and the know-how and the resources to keep themselves safe. And so this, this, I offered this example because this was a great example of a community leading, it wasn't a health system that was like, well, we are gonna do this, or we're gonna, you have to come to the clinic and our health system to get these services.
It was a community saying, we need to talk to our people. How do we do this? And they, they allowed us to kind of partner with them, but they led and to me that's how the solutions are going to. Right. We need to, in some ways get out of the way and let people do what they need to do for their health, for their wellbeing.
Um, and so I think about my patient with N Stage renal disease, and I think about this example of trusted messengers that come from the community as you know, ways that the system didn't work with my patient, and ways that the system is working better in the work that we're doing with just equity for.
Harper: That's so heartbreaking, and it's interesting because you used the word partner and community numerous times in that, and I [00:31:00] think it's such important words and concepts to keep in mind related to health, whether it's H I V, whether it's a rare disease, an invisible illness, whatever it is. So much of this is building a team around you as a patient and finding the right people who are going to advocate for you and support you.
And I've been really fortunate to have doctors that sort of come together from all different UN institutions that are willing to support me and work together and work collaboratively. Yeah. But I realized how rare that. And I live in a different country now and I'm seeing how my doctors at the N NIH and NYU and the US and my doctors here in Tel Aviv are working together via email making decisions about my health and realizing how damp lucky I am and how unfortunate that that is luck.
And that is, you know, because I found the right people. But that, that's not the norm. I mean, even people here are going, this does not [00:32:00] happen. You are such an exception here, and maybe people are just really interested in the fact that you have such a rare disease that they're invested in the research and the learning.
But at the end of the day, I just can't wrap my head around why more people can't have this access and community and partner. To support people for what they deserve, because we all deserve the same level of equal rights in the healthcare system. I mean, bottom line,
Dr. Stella Safo: you know. You know, you've said it so well, Harper, because I think one of the things that comes up as you're describing this is not only does every patient, every user of healthcare deserve this, but it also makes it more of a pleasure to be frontline staff, to be a physician, to be, you know, a doctor.
Because what's happening now is that the moral injury of. Things that happen to your patients. Things like what I've just described to you of, of watching a young 31 year old man die for no reason. These type of [00:33:00] things are driving people out of our profession. We're actually disincentivizing those providers of healthcare from staying within the system to do the work because we've created it so that.
We're harming people, we're harming them as patients. We're harming them as providers. So I as you're, as you're describing what you're describing, you know what, what came to mind for me is that those providers, you know, from where you live back to the us, they're probably. Really loving this feeling of like we're providing her the best care.
We're giving her the ability to live her best and fullest life. Like there is a reward in that. And what happens in these systems when you don't do that and you don't have that, is that people are suffering. I think providers are suffering. And you're seeing it in the exodus of people from he. .
Harper: Yeah, I think you're absolutely right.
And honestly, I a hundred percent could not live in Tel Aviv if I did not have the care that I have here that's working so closely with my doctors in the us. And I was also just thinking, are you familiar with [00:34:00] the narrative medicine program at Columbia University? Yes, so I had two professors, episode number 60, Katherine Rogers and Bed Samuel talk about it, and I highly recommend listeners going back and checking out that episode because there's so much to educating doctors and nurses and practitioners on bettering the care and treating patients with the care that they deserve.
Is there any single aspect of your work that feels the most urgent to you? Right.
Dr. Stella Safo: Yes, I would say that it's making the case for why we need equity in he. And I say that because we are watching in the US a tremendous amount of backlash. You know, when people talk about anti woke or people talk about just some of the framings that they have, you know, cancel culture instead of accountability.
There's all of these desires, I think, to really push back on the requests for a more equal society. And we're [00:35:00] seeing it now, codified in law. There are. I think 29 states that have legislation against teaching critical race theory. Meanwhile, seven out of 10 Americans don't know what critical race theory is.
They just know that it sounds bad, and it sounds like those people, those people in quotations are gonna indoctrinate my children. And meanwhile we have, you know, places like Florida just straight out banning teaching anything about race on certain levels. And so we are seeing now after 2020 when I think we were trying to make some movements in in favor.
Of, um, improving changes. We're actually seeing a backlash to this, and it's going to end up impacting healthcare. And so the work that we often see in healthcare around really centering equity is done with d e I committees. So diversity, equity, and inclusion committees that kind of look at the data, look up at ways that we can kind of make sure that certain groups are being brought along as we're improving and delivering care in our health systems.
So what's gonna happen if cultural backlash gets to the point where, These types of investments and this type of work is [00:36:00] disincentivized, right? We will get what we have now, which is the status quo, which is that it's a naturally understood reality that white Americans take priority, take precedence, just do better than any other group.
And if you don't purposefully design for improvements in all groups, then we're just going to have the predominant group continue to basically kind of excel while many other groups continue to not excel. It is a concern of mine that I'm seeing with this push, with the backlash that we're going to actually start to disinvest in equity work.
And so my focus, and I hope the focus of others is to really make the case for equity. We have to make the case for equity and the numbers really tell it. You know, recently Harper, there was a New York Times article, um, that interpreted a study that was done in California that found that for. Birthing mothers, black birthing people.
Even if you were of the highest socioeconomic level, the likelihood of you to die was still so much higher than. [00:37:00] White birthing people who delivered around the same time. And it was like an order of, I think a hundred per 100,000 live births. And so nothing is saving us. It isn't like class is saving us or privileges saving us.
If you're looking at things around race, race is an issue and we have to really think about with inequity how we center that, you know, sexual identity now and all the, the bans against trans care, trans, um, medical care. We have to think about what's gonna happen if we allow the cultural backlash to push against this for a group that has some of the highest suicide rates in our country.
So, you know, what's kind of keeps me up at night? I think what keeps me up at night is that we are failing in making the case for equity and in healthcare redesign. And, and that just means that more people will continue to be harm, to be harmed as they have been, uh, historically and in our contemporary times.
And I just think that that's a shame cuz we really do know.
Harper: Oh, it's like painful to listen to. Truly. And honestly, I hate that, you know, [00:38:00] given the state of the world right now, financially, I think that budgets are being cut in companies around D E I and it's just like, is this really the thing that you're gonna go backwards on?
So many companies started implementing it in 2020 as you referenced, and now all of a sudden it's like, eh, this is something we can nix and it's just infuriating. So you're involved clearly in so many different things related to healthcare advocacy from your company and boards. What keeps you fighting against deep systemic injustices?
I would say that
Dr. Stella Safo: it's, it's the belief that I know that we can do this. It's a belief that we as human beings are just, we are exceptional. And when we put our mind to something, we can fix the the problem. I think if I didn't believe that, if I had, if I gave it to my nihilism and just thought, well, these systems are the way that they are, they won't get better.
I wouldn't push quite so hard, but I know that we can be better [00:39:00] and you know, obviously now being a mom, I wanna leave this world better for, for. My child, then I found it. And so I feel that additional pressure as a clinician, as someone who takes care of, of people when the system fails them. I, I wanna think about how we can make these systems better for them going forward and for the next person.
So I think it's a combination, but it really comes from this place of knowing in my spirit that humans are good and humans are kind, and we can treat each other better and hold each other and nurture each other and create a world that is more, just more full of joy, more full of peace and love and, and that's the world that I wanna see.
Harper: We need more people like you in the world. Stella. Thanks, har. If there are people listening who wanna support equity in healthcare but don't have a healthcare background, what's the most effective way for them to support the cause?
Dr. Stella Safo: I would say wherever you are in whatever spaces you're in, if you see efforts [00:40:00] towards a move to center equity, like within education, within healthcare, add your voice and support it.
Part of why I think we're seeing the backlash is that the, the people who don't want these things are louder. And so, yes, I, you know, all of us wanna just go about our days and do our jobs and take care of our families, but it actually matters that you show up to that school board. It matters that you send a note to your, you know, doctor's office saying, you know, like, I love the work that's happening from the D e I committee.
Just things that add our voices to let the powers that be in those systems that kind of run the way that they run, know that we want it to be a different way. So wherever you can do that, I would say do that. And certainly around. Democratic process. Voting for individuals who support the things that you believe in, I think is one way that we do this.
Because the political world is where so much of the resourcing and the legislation comes from that supports this work that it matters, especially on the local level who is in charge of these different legislative bodies. So I would [00:41:00] encourage us to do at least that.
Harper: Thank you. That's a great idea. My last question for you is, what do you wish people knew about Invisible?
Dr. Stella Safo: I wish people knew about invisible illness, that it doesn't define who you are, that there is an incredible amount of mental load it takes to walk in a world and appear like everything is fine when you're battling something, and so individuals with invisible illnesses tend to be incredibly resilient.
But if you're someone listening who has an invisible illness, . I want you to just remember that you're so much more than just that because I know that it takes up a lot of space in your mind, certainly in your body, but it doesn't define who you are, and you are so much more than your illness. You're so much more than your ailments.
And that kind of sense of the expansiveness of who you are, at least to me, does bring me some comfort and.
Harper: Thank you, Stella. You're incredible. I appreciate you so much for [00:42:00] sharing your knowledge and wisdom and doing the incredible work that you do. I think I already was wondering how you did the work that you did prior to being a mom and now really wonder how you do it all.
Uh, where can people find you and learn more about just equity for.
Dr. Stella Safo: Sure, so you can find us online at just equity for help.com. You can follow us on LinkedIn with the same name. You can follow us on Twitter at just underscore equity.
Harper: Amazing. Thank you so much.
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