Advocating For Rare Diseases

Dr. Brewer (0s): When you deal with a rare disease, when you’re able to connect with an individual and a family and a support network that are challenged with the rare disease, it sets you up to deal with and handle all the other diseases so much. I don’t want to say easier because I don’t think any disease processes easy, but in a way that is more manageable because the intricacies in the rare world, the nuances are so much more evident that when you learn how to balance those, when you learn how to have that conversation, because it is about just asking them the right question and then allowing yourself to have that conversation and really listening and allowing you’re opening the door for the patient to have the conversation with you and give you insight.

You’re going to get visions of what you, one you never thought you have, but then can be applied to so many other things on the other end,

Announcer (59s): Welcome to difficult conversations lessons I learned as an ICU physician with Dr. Anthony. Dr. Orsini is a practicing physician and president and CEO of the Orsini way. As a frequent keynote speaker and author, Dr. Orsini has been training healthcare professionals and business leaders, how to navigate through the most difficult dialogue each week, you will hear inspiring interviews with experts in their field who tell their story and provide practical advice on how to effectively communicate whether you are a doctor faced with giving a patient bad news, a business leader who wants to get the most out of his or her team members or someone who just wants to learn to communicate better.

This is the podcast for you.

Dr. Orsini (1m 45s): I am honored today that the Orsini way has partnered with the Finley project to bring you this episode of difficult conversations lessons I learned as an ICU physician, the Finley project is a nonprofit organization committed to providing care for mothers who have experienced the unimaginable, the loss of an infant. It was created by their founder, Noel Moore, whose sweet daughter Finley died in 2013. It was at that time that Noel realized that there was a large gap between leaving the hospital without your baby, and the time when you get home, that letter to start the Finley project to Finley project is the nation’s only seven part holistic program that helps mothers after infant loss, by supporting them physically and emotionally.

They provide such things as mental health counseling, funeral arrangement, support, grocery gift cards, professional house cleaning, professional massage therapy, and support group placement. The Finley project has helped hundreds of women across the country. And I can tell you that I have seen personally how the Finley project has literally saved the lives of mothers who lost their infant. If you are interested in learning more or referring a family or donating to this amazing cause please go to the TheFinleyProject.org. The Finley Project believes that no family should walk out of a hospital without support.

Well, welcome to another episode of difficult conversations lessons I learned as an ICU physician. This is Dr. Anthony Orsini, and I’ll be your host again this week. Well, today we’re going to discuss difficult conversations about sickle cell disease and rare diseases with someone whom I believe is uniquely qualified to have this discussion, Dr. Marjorie Brewer is the owner of mad fit, a medical consultant, wellness and health business. She is also a medical consultant for the national sickle cell disease association of America.

And more recently held the position of patient engagement lead in rare disease, sickle cell for Pfizer, what she has a new title. We’ll talk about that later. And clinical research outreach liaison for the children’s hospital of Philadelphia, her groundbreaking work as a primary medical consultant for the Philadelphia is mayor fun, fit and free program. A key part of the mayor’s commission for health, fitness and inclusion allowed her to apply her training in medicine, exercise physiology, and alternative medicine and integrative community-based preventative format with the primary goal of making Philadelphia healthier city.

From there, she molded a career in functional medicine, herself, a patient of sickle cell disease. Dr. Brewer is a firm proponent and practitioner of comprehensive and preventative health and wellness planning. Over the past 10 years, she has developed relationships with collaborations with various organizations and health initiatives in the rare disease space. Current and past initiatives include organizations such as the American red cross and her life foundation, rare disease summit, American heart association, Susan G Komen and lupus foundation of America.

Dr. Brewer has combined her expertise as a physician, her work in multiple sector settings, her passion for wellness and her experience as a sickle cell patient to address the inequalities of sickle cell patients so that they live healthier lives without distrust of the institution that served them better. Thank you so much Marjorie for being here today. Really welcome. I know you’re incredibly busy, so I appreciate

Dr. Brewer (5m 7s): It. Thank you so much for having me, Dr. Orsini, it’s awesome to be here.

Dr. Orsini (5m 11s): There’s so many great topics in difficult conversations with this is coming up on a year. Now that I’ve been doing this podcast, I get to meet another amazing person every week. And, you know, we always say at every critical moment of your life, it starts with a difficult conversation. And we’re going to talk about some very difficult conversations today. And my promise to the audience is always to inspire and for them to learn some valuable communication techniques. And so we are really going to jump into this. I think this is going to take more than an hour, but I promise the audience I’ll limit this to 30 to 45 minutes.

We might have to have you back.

Dr. Brewer (5m 45s): I’d be happy to come back. Let’s do it.

Dr. Orsini (5m 48s): So let’s Start off just by, you know, again, during your introduction, it was really a mouthful. It was three or four paragraphs. Let’s just start off by letting the audience get to know who Marjorie is, where you’re from, how you got to this point of the pinnacle of your career being on my podcast. So tell us about yourself.

Dr. Brewer (6m 6s): I would love to. So in recent conversations that I’ve been having, I tell people that I went from the kid that didn’t have any boxes checked off the list to being the person in the room that checks all the boxes off the list. I did a presentation recently for my Alma mater for university of Pennsylvania med school for the women’s program. And that’s kind of how I led it and closed it. And I’ll tell you why. So I’m a kid from Brooklyn, New York. I’m a new Yorker.
Dr. Orsini: Wow. I didn’t know that I am. I’m a new Yorker.

Dr. Brewer (6m 36s): I Was in Brooklyn for a whole year. I lived in Sheepshead bay when I did my internship in the Coney island. So it’s pretty cool.

Dr. Brewer (6m 42s): I know that area. Well, did you go to Coney island? Did you do the hot dog thing and do the cyclone

Dr. Orsini (6m 46s): And all that? Did all that. That was pretty cool. Yes.

Dr. Brewer(6m 49s): Fantastic. You didn’t do the beach in five degree temperature and jump in the water though. Did you? I’m

Dr. Orsini (6m 55s): In Florida now because I can’t stand the cold. So that never even was a consideration.

Dr. Brewer (7m 1s): That’s one of the events. I also skip in Brooklyn, but anyway, I digress. So come from Brooklyn. My parents immigrated here from Haiti. So I am first generation here in the United States and my parents really structured my background so that it was diverse. And I’m thankful to, for that, I grew up in this era with them as my shepherds, that I went to public school, where, to me, everything was kind of equal opportunity and very diverse. We had Jewish kids in our class.

I had Italian kids in our class. I had African-American kids in our class. I had every type of teacher from every race and ethnicity and background possible. And my parents are always fostered this mindset as if you put your mind to it, you can do it. And that was from early on. And I kind of give you that as my initial intro because of the time that we live in right now and the challenges that we are facing socially, and that trickles down to every single level and every profession. So, you know, you fast forward to going to public school, getting into college.

I kind of knew my interest in medicine. Right when I was in high school, we had this major event happened with my uncle, where he had a heart attack at our house. And I was at the time of candy striper had just started working for Brooklyn hospital, one of my high school internships. So, you know, I had, do you have to do the whole CPR thing and kind of know. So I walked in cause I was coming back from being on one of the days at the hospital feeling like I know the basis. So I should be able to at least help him. That was my mindset. I know what the five steps are at the time.

I thought it was five steps. I should be able to at least keep him going until the ambulance gets to the house. And he actually by trade was a physician in France. He was from Europe. So he was visiting for a family event and we lost him. He was still alive when he left the house, but by the, they got him to the hospital. Things did not work out. And the heart attack came out of nowhere. That started my mission on not wanting to be in that situation. Again, I did not want to feel like I was helpless or could not help an individual get to their next step.

That started my pathway for medicine. Part of me wanted to do theater. So I was a double major in college. I think my parents were very thankful that I chose the science pathway, not the theater one. I had some good theater skills, but you know, I think parents want more security, which in college I was faced with a counselor who didn’t know me, but from day one suggested that I lower my expectations. And at this time I did not know that I had a chronic disease.

I was getting sick occasionally, but no one was able to diagnose what was going on was me just yet again, coming from a background of individuals that said, parents had said, you can do anything that you put your mind to. It don’t let anybody stand in your way. I kind of let her do her spiel. And I kind of put it to the side. Thank goodness my family introduced different physicians, different people into my life along the way. So they served as my support network. It was unfortunate that that’s how she started our relationship. But you know, it is what it is. I think her perspective was I don’t want this individual to feel like she’s failing as opposed to lifting me up and saying anything is possible.

So kind of referencing back to, I didn’t really check all the boxes off, you know, by anybody’s mean you’re not necessarily living that ideal life or whatever. I didn’t grow up in the best and most expensive neighborhood. My parents didn’t have access to everything necessarily. They immigrated from another country and became citizens here, but they gave me the best that they had to offer and made sure that my background was always culturally diverse, fast forward to getting into med school out of the 12 schools I applied to, I got into 11, which of course my guidance counselor was like, it’s because of her that I got into everything that I got into all of a sudden she was taking credit for it.

And I knew the real story. I knew the backstory, I had my options and opportunities to pick, which is a blessing, a big blessing. It was between MIT and Penn when it came down to what a terrible, terrible choice, terrible choices that was and get this, my parents who at the time. And just to again, give you some example of who I am were upset that I didn’t apply to Harvard. And I was just like, but it doesn’t speak to me. I want to go to somewhere that speaks to me. That makes me feel like I’m going to be able to connect with people and help people because that’s what I felt like my parents had given to me.

And that perception at the time may have been a misperception, but it wasn’t one of my after reading through everything and going through this diligence of, cause I felt like I had to do the homework since my guidance counselor was like, these are the osteopathic medical schools and then osteopathic and peak. Those were that they had just started. So they were considered at the time, maybe easier to get into, which I think is a fallacy. But right now we all know they’re just as competitive at all other medical schools. And sometimes I think prepare you in a way that the traditional medical schools do not prepare you for the outside world, which gives them an advantage.

But after doing my research, I put my top 12 down and I went to my interviews and decided to go to Penn, which was the next chapter of my life. So I applied to my school at the time that affirmative action was at its peak. So it felt like, you know, you have people telling you conversations. So the two most common questions that I got were, what do you feel about affirmative action? And what are your opinions on the right to die? Those were the two hottest topics. When I was applying for med school from again, a background of diversity and you’re in Brooklyn, everybody in Brooklyn is kind of equal.

We all participate. Nobody tells you, you can’t, or you’re here because of the color of your skin. That was foreign to me. I started asking people, why are you asking me that question? Cause I think I’m qualified. That’s why I’m applying to your school. And I don’t know that affirmative action should have anything to do with that. Don’t you want a diverse population of physicians so that they can relate to your patients. It just seemed to make sense, but here’s what was interesting. Every interview that I went to the administrator or inevitably the first person that I spoke to would look at me and say, you’re Marjorie Brewer?

And I’m like, why did I not sound like a Marjorie Brewer on the phone? No, you’re not quite what we thought you were. I was like, oh, I found that interesting. Now again, my friends were like, you know, you talk so proper. I speak English. I just don’t speak about, I mean, this is proper English. My mom’s a teacher. So God forbid you had the wrong sentence, syntax. You were in trouble. Penn gave me a wonderful experience in that in a sea of 121 people. There were only 10 individuals of minority backgrounds.

That to me was very different from what I grew up with. That was a learning curve. I think that was the first introduction aside from college where I started to second guess, am I supposed to be here? And thank goodness I had that strong background that said you are supposed to be here because your voice matters. And this is when I got diagnosed with sickle cell disease and of all places to get diagnosed with sickle cell disease. That was the perfect place to be because chop, which is the pediatric extension of the university of Pennsylvania had one of the leading, if not the leading pediatric program at the time.

So they were able to literally diagnose me what no one had picked up on my entire lifetime because it wasn’t part of newborn screening in New York. And it wasn’t the first thought for the ER people. So I already had experienced my little bit of disparity with the medical community on that end. It was bread and butter to them. So actually my academic administrator, when they heard that I was sick, was like, you know what? That sounds like sickle cell. Let’s just take you over to Dr. Honey from pong and in an hour electrophoresis being what it was.

I knew what I had and that started my next path on figuring out my disease process, how it related to my current journey. Cause I always feel like everything happens for a reason and where I was going to go with my career. So it affected me changing my career path from interventional pediatric radiology to wanting to go more into internal medicine and doing specific work in sickle cell disease and rehabilitative medicine. Because what I really figured out during med school with this diagnosis, with the support network that I had and with participating in a program called bridging the gaps, which was amazing because it gave me a viewpoint of what medicine could be in real time.

It gave me a viewpoint of what medicine was within the community and that we were accountable to the patients we’re serving. And it happened right at the best time, right after that first year of med school, when you’re entrenched in the books and you’re thinking medicine is what’s in this book and what the teachers are presenting. I got a completely different view. That program is led by Lucy two-tone and Dr. David. But it was amazing because it gave me this 360 view of medicine by academics medicine in the community and medicine for me as a newly diagnosed patient, because then what a lot of patients had suffered and experienced, whether it were discriminatory or we don’t have a cure for your disease process, or we don’t know what’s going on with you, what medication are we going to give you?

Because there’s so many labels attached to that disease process in any rare disease process, I had not had a lifetime of experiencing by then. I was already planted in a community that supported me, had a great education in Penn, but also opened my eyes to even more possibilities of what you could do and what medicine could be once you applied yourself. And who my number one agent was that was the patient, graduated from med school, worked with the community again, decided to work for the mayor.

I thought, you know, wellness was the biggest thing, making people healthy was what makes people well. And I believe that when, while people see sick people, they want to stay well. And when sick people see well, people they want to get well. So how did I bridge that gap opened up my own wellness clinic and really focused on rehabbing individuals because when people always want to go back to their level of function of where they felt like they were optimal and in the disease process that I’m suffering from, you get knocked down so many times with each crisis. It’s almost like building yourself back up to where was I when I felt my best?

So where for some people that’s only one defining event or as you age, or, you know, you get a knee issue where you hurt yourself in your rehab or you have a heart attack, they catch it and you rehab back from me It’s continual because every time I get sick, I feel like I started level one again, how do I get myself back up to where that optimal? And I found that people related to that quite a bit, and that was at the crux of what they felt like being healthy was. So I made it, my mission continued to work with sickle cell expanded that career because I felt like I was a really good bridge for the conversation between physicians and patients.

They spoke different languages, but at the end of the day, when I really found a good physician or had a good colleague, they want the same for everyone. They want you to be at your best health. So how do we make that happen without all the barriers and issues that pop up so that the path for the patient is as smooth as possible? I think sometimes as providers, my colleagues got it twisted that their past should be easy and the patient should just then kind of deal with whatever, because I’m giving you my best. And it’s actually the opposite, the patient’s path.

It should be the easiest. And we, as providers should deal with all the obstacles and make it easier for them. So was able to become a medical director for the sickle cell disease association, which was a dream job having my own central was a dream job. And then going back to chop and working with the team that trained me for the comprehensive sickle cell program was also a dream job. And now working in rare disease. And I was able to be patient advocacy director for Pfizer for their sickle cell initiative when they were developing a treatment back then. So that’s kind of me in a nutshell, wow, that’s

Dr. Orsini (18m 56s): wow, that’s A lot to digest. There’s so many things. I took notes here. I want to go back to what you said about getting someone in back to where they were optimal. There’s significant number of our audiences, not in healthcare. Sickle cell is usually diagnosed early on. So when you got diagnosed, that’s very rare to get diagnosed that late. It is a lot of flare ups and back and forth of you feel well, and then you get sick and then you feel well, do you think that people have chronic or rare diseases such as sickle cell every time they have a crisis that they lower the bar to where they want to get back again.

In other words, you know, after their third, fourth, fifth crisis may be that optimal health that they dreamed about, maybe now it’s instead of a 10 out of 10, they settled for an eight out of 10 and then settled for a six out of 10. Is that something that’s real?

Dr. Brewer (19m 42s): I think my consensus is that they redefine what optimal is. And I also think that their definition of optimal is very dependent on the initial team that carried them through the first couple of years of their life. So there are some comprehensive pediatric centers that are more, I mean, I think they all have great wraparound services, but then there are some services that are much more uplifting and give you that mental focus that you are not your disease.

That is a very specific way to speak to a patient so that they never identify them with themselves, with their disease, as opposed to sickle cell is part of who you are. So I find depending on what bucket individuals fall into, I think there is a redefinition of what optimal is every time you get sick. But then I think with the stronger individuals and by stronger, I just mean those that have had more exposure to individuals that can persist in being positive, even when things seem bleak, because that is so important.

The mental state of a patient that is basically going through PTSD, this huge experience that is life altering each and every time and questioning whether they are going to make it through that crisis because many crises and in death, there is a specific way to treat, handle and care for that type of person. There’s a language to use so that you’re able to help them reconnect with what is possible and what their potential is. I find that individual that have a glimpse of that can hang on to it again and think very optimum individuals that have not had that opportunity yet to do that.

redefine, not necessarily lower. It might seem a little worrying to us, but read the fine what optimal is because they are unsure of their capabilities. I think because I have an advantage of being a physician. I know that the body can reboot. It’s so smart. The body is the smartest machine on the face of this earth. So because that’s kind of in my cells in the back of my head, I’m like, if I just tweak myself the right way, they’ll respond, but everybody doesn’t have that option or that reserve.

Dr. Orsini (22m 2s): So What I’m hearing over and over again, and I’m so delighted to hear you talk about communication, the name of my book, it’s all in the delivery. And essentially from what you just said is it’s all the delivery. It’s how the first physician or the final physician really discusses the disease with you. Especially some of these people are children. Many of them are children. And that first conversation, and that’s what this is about of saying you have sickle cell.

And as you know, I got my start 10 years ago, training doctors, how to give bad news how that conversation goes. So my first question is most physicians are not equipped to have that conversation. How can we better equip them? And it’s all about teaching them communication. We know that most physicians are not comfortable giving bad news. So I think that conversation probably goes really well at chop or at university of Pennsylvania at a sickle cell center, but doesn’t always go so well when the family Dr. Maybe in rural medicine is breaking the bad news.

There’s a question in there somewhere of, it’s more of an observation, but how do we help the doctors who are out there help with that initial conversation? And then I’m going to lead up to another question. So let’s start off with that one. What do we frame that conversation for those doctors who have to say you have sickle cell or cystic fibrosis or any rare disease?

Dr. Brewer (23m 32s): I find that that delivery of information is vital. And I can even use myself even when we didn’t know what the diagnosis was. Just the contact and interaction with ed because, you know, ed docs want to have an answer, not being able to give you a concrete answer. It almost completely showed on their faces and their body language when they walked into the ER. So here you have this person who’s screaming to the top of their lungs, two parents who have no reason to think that they’re lying because that wasn’t my style.

As a kid, I had very strict parents. So I felt like they wouldn’t see right through me for lied. So there was no lying going on and I was really screaming for dear life. And you have this person coming in, like my lab work doesn’t show anything. So I’m not so sure what you’re complaining about. It’s like my parents were quite alarmed and struggled with that quite a bit. I do think that if we can approach our conversations with more compassion and then lead in with a sense of how would I feel if I were on the other end and almost play that scenario in our heads, it doesn’t take much, our brains are so capable.

And as humans, we can do so many things before actually uttering that first word. I think that in itself would change the paradigm significantly. I will add that there was a component of when I did find out what I really had of being part of the process. And part of that was because I was a med student there. So I got to, once they drew my blood, I was involved in, this was the electrophoresis. I was watching the sample run through the pages and the little- being part of that. And having that conversation all the way through was actually really comforting.

And I didn’t have an answer yet, but I felt like we were doing it together. We were on this journey of trying to discover together and whatever the outcome was that these people would still be there for me. So I think if we’re able to, as providers and as in whatever environment, you’re in, actually try to keep that in the forefront because I can say the same thing for lawyers is I have friends that are lawyers. If you think about the case that you’re dealing with and you want to interact with the person, can you approach it with a little bit of how would I be feeling if I was going through the same thing they were going through before actually uttering some words, we would be ahead of the game and I think have a better impact and better outcomes.

And at the end of the day, we all want good outcomes.

Dr. Orsini (26m 0s): yeah. At the Orsini Way when we do the workshops, we talk about imagine plan and adapt. And when you’re going into that conversation, the first step is, as we say, before you go into the room to have that difficult conversation, take your own pulse because you’re going to be a little nervous. Imagine what it’s like to be the patient, come up with a plan. You spoke about attorneys. That’s how exactly how we discuss it. The attorneys do this closing argument. They have this plan. So you, we use the breaking bad news program acronym. You come up with a plan. This is what you want to say. And then adapt because you never know what’s going to hit you, right?

You never know how the person, you know, usually you can control the narrative by being better at it. There’s a great book that you probably read. They give out a lot of medical schools called how doctors think by doctor Grutman. And you alluded to that in that book, it starts off by a patient who’s got a chronic illness that I think it was Celiac disease was undiagnosed who really at her wit’s end. And once she got labeled as a psych patient, no matter how many doctors she saw, they just assumed that she was a psych patient.

And she was actually suicidal until she saw Dr. Groutman. Or it was Dr. Faulk, I think in the book and he didn’t read her chart. He said, I don’t want to read your chart. And she said, why do you were asking me all these questions? You have to desk falls or charts. And he said, I want to hear it from you. So it’s about listening. You talked about the ed doctors, and I think the average time it’s been studied the average amount of time, it takes for a doctor to interrupt. The patient is 11 seconds. That’s a fact 11 seconds.

So we don’t listen. And you were really fortunate because you knew what was going on, but there’s a real issue with teenagers, maybe lower socioeconomic teenagers, minorities are coming in with crises. They’re not going to their main hospital that knows them. And then they’re screaming in pain, whether it’s sickle cell crisis and what happens to them, unfortunately,

Dr. Brewer (27m 58s): Interesting you referenced it because the New York times actually did pieces of which I posted about one recently about some of the social inequities that individuals with sickle cell disease have suffered and because of their illness or because of individuals not believing them and asking the next question or taking the next appropriate step, they’ve been put to the side incarcerated when they should not have been and then have lost their lives because of it. So when you have that scenario where you’re coming in and you’re not believed, and as you and I know as providers in dealing with individuals with rare diseases, the last place an individual actually wants to be is the hospital.

We are in a very special group in that the hospital is an extension of our family. The medical community is an extension of our family because we see them regularly. And when I say regularly where the average person has maybe four to six visits a year, we are in every month and sometimes twice a month. I mean, we know everyone by first name when they walk in the door. Hey, so and so hello. So, and so what did you have for breakfast? Love that? That’s your favorite color? I mean, these people, are an extension of us.

So our perspective is a little different. When you talk about your essential and your family, there’s a component of trust that you want to have and not being trusted and thinking, or being put into another category of being opioid, seeking, negates your word automatically. It lowers your value as an individual where you’re hoping to step into an environment that elevates your value, or at least understands you because they have that medical knowledge. This is kind of your perspective as coming in as a and therefore, because they have that extra knowledge, hopefully will not judge you and look at you first as a human being who needs optimal health.

And when we take that oath, it is to make sure that I provide the best care for this individual. While, I’m dealing with them without any preconceived notions or judgments. I love that in rehabilitative medicine, because that was part of my training. One of my mentors always said, Marge, look at the patient, look at the patient, spend time with the patient, watch them, observe them and talk to them. It will tell you so much more unbiased information and believe them then looking in their chart, that should actually be secondary.

So I love that that book actually references that, but our individuals have been struggling with this label of you’re an opioid seeker. So therefore you’re making it up because pain is objective. And there are no circling back to your question. There are no, you know, real ways real in quotations ways for me to measure your pain. So how do I know that you’re really telling the truth? And unfortunately, that is in the forefront, as opposed to this illness thinks will this person within the next 15 to 30 seconds, if I’m not aggressive enough, so let me take them at their word, provide the treatment.

And if you really need to do that later on, that was ample time to deal with that. But what’s frightening to me is that individuals. And sometimes, cause I talked to as first responders also because sometimes first responders or the people on the scene first when you’re dealing with an individual with a chronic disease or a rare disease, where part of their regimen happens to be opioid medication. And there is no cure in the midst of an opioid epidemic. We have definitely been unjustly labeled as the population that needed opioids the most, but research thank goodness has now shown that we make up one to 2% of what is considered the population that are actually opioid abusers.

And we’re changing the language now, just as exemptions have been made for cancer patients in the literature for providers, the same exemption and exceptions are now being applied in HHS and CDC for patients with sickle cell disease, because there is a difference and that pain is very, very real. And so what I tend to do for med students when I talk to them, because I still participate in the bridging of the gaps program is I try to align the pain with something that they can relate to. So it is the female patient or female individual, excuse me, that might’ve had a baby.

I told them think of their contraction. If it’s someone else that maybe has, has had frostbite at one point or another, I’d tell them, do you remember that pain when you just stubbed your toe or came in from the cold so that I can have them touch a piece of what the patients are going through and hopefully rewire their thoughts because what ends up happening is when you apply those labels, put them into those buckets. And then really what they’re doing because of the book is with drawer care, which draw proper care, you’re doing more damage to that patient than you would have.

If you just listened to them for five minutes, at least gave them the first dose so that They can talk them off the edge and then process it later on down the line. So I’m really hoping that some of these inequities that have come to surface and that are being talked about more now, the social injustices, the opioid epidemic, as it relates to individuals who suffer from diseases like myself, are more in the forethought of providers on all levels, so that they take a step back, take that pause.

As you said, reset before then taking the next step because their decision is a life and death decision and where I, as the patient, I’m feeling it real time. They, as the provider have to click into that and realize we’re talking about someone’s life and not just whether or not they want a couple more pills and the majority of the population, as you know, they’re not going to go in unless they’re really, really sick.

Dr. Orsini (33m 47s): Yeah.I talked about this in my Ted talk a couple months ago, about how we can fix medicine by improving the human connection. And you mentioned a couple of keywords there. And the important thing that I want to stress here is listening, but finding commonality. And I think what’s happening right now in medicine. Well in human beings, right? Neuroscientists say that our human brain makes 350 million assessments of someone’s body language per second. So doctors are human beings, no matter what your background is, you’re going to walk into a room and you’re going to 350 million times per second.

You’re going to make an instant judgment about that person. And studies have shown that you’re more likely going to get pain medications if you’re well-dressed and you have a suit on, or if you’re poor or you’re a minority or whatever, maybe that’s human nature. That’s a whole conversation somewhere else. But what I stress in my Ted talk to patients and also to doctors is if possible, now, of course the person’s screaming and they’re really in a lot of pain. My advice to a patient would be to find that commonality with the doctor and the doctor to find the commonality with the patient, talk about something else other than what’s happening right now.

You know, where are you from? And look, you and I is like, you have a Haitian French background. I have an Italian American background. We talked for five minutes. We both found out we were in Brooklyn. And then I trained in Philadelphia. You’re in Philadelphia. I think our last conversation we talked about Pat’s and Geno’s steaks. You can find commonality with anyone. So my advice to a patient is if possible, especially if the doctor looks rushed to you, if you’ve decided that doctor looks rushed, you know, ask them how their day’s going, or, you know, make some small talk with them just for a minute, because that will humanize you and doctors for, it’s not a good thing, but happens all of us.

Sometimes we started to think of, you know, who’s in bin three, oh and behind the curtain is a that’s the sickle cell patient. And in six is the nephrology patient. And instead of their names, right, they become the name of their patients. So I think that’s, that’s great advice to both patients out there and doctors to try to, if you find commonality, things will be better.

Dr. Brewer (35m 60s): I do the same thing. And I tell patients one thing, one piece of advice, and I tell providers and another piece of advice, and only because you made that reference though, awesome reference of the neurons and within a short period of time. So I tell patients, try your best to not wait until you add a 10 out of 10 pain or not wait until you’re at a 10 out of 10 of crisis, because inevitably yes, we all have to deal with biases. Patients have them providers have, you are best served. If you can be a little calmer and be able to receive information a little bit better and then deliver information a little bit better and connect when your level of acuity is a little less.

And I always, always, and I tell patients, you know, kind of in a life-saving way, you don’t want to wait till you’re a 10 out of 10 to then process everything. Cause then of course, everything will get on your nerves and that will not best serve you in an acute situation. As far as providers, I’m a big into wellness and health. Meditation is one of the biggest things that I do. And I tell all newbies that I can get my hands on before you walk in that room, try to take three deep breaths. I tell my regular clients and people that at the top of every hour, take eight, but I tell them to take it so that you can one leave.

What you just did behind, give yourself a moment to catch up with you. And then the third one is one to clear your mind. So you can best serve the patient with clarity and this, you know, the decorum of humanity. Once you walk into the room, because that will serve you volumes. So I just wanted to piggyback on what you said.

Dr. Orsini (37m 35s): great advice. That’s like what we say, take your own pulse. Jokingly, just calm down, forget about what you just did. But I knew we were going to have trouble fitting this all in, but I want to get into before the time runs out rare diseases other than sickle cell. And there are so many of them out there, you name just a few, I think almost universally they’re underfunded, especially the ones that are maybe orphan rare diseases. We somehow don’t want to have a conversation about that. We kinda push it aside.

You know, it’s real sexy to say, let’s donate money to cancer. Let’s donate money to heart disease, but then there’s some really rare diseases out there. And everybody, what’s that, you know, and the government doesn’t want to fund it. And the pharmaceutical companies don’t want to pay for it because well if not that many people have it, I’m not going to get a good return on investment. What are the difficult conversations that we have to have today about these poor people that are suffering from these rare diseases and how do we move beyond that?

Dr. Brewer (38m 31s): You’re speaking to my heart. And of course I’m thinking of the Gaucher is of the world. I’m thinking of the ALS is of the world. I’m thinking of all these rare diseases. So one part of the conversation I will say that I like to start with is one win for a rare disease is a win for all rare diseases. I like to open up the conversation with that. And when it comes to, and I feel like rare diseases, the micro and then the rest of the diseases are the macro. I tell individuals one who liked to go into the sexier as you put it of the disease processes, because that is always more appealing to people that the macro only survive when you know, the micro really, really, really well.

And inevitably the connection of what has helped the macro or the larger those sexier diseases have come from the rare disease population. And what if you could elevate what now, when you talk about diseases and medicine are the minority group, elevate them so that they feel as important to a certain extent as the sexier illnesses, then there is so much more cohesiveness.

And what you will actually see is an answer that you might’ve been looking for has been staring you right in the face all along, but because you were kind of shy in delving into the rare disease world, you missed it! So why would you want to miss that? So I tell people that right off the bat, I also tell people that when you deal with a rare disease, when you’re able to connect with an individual and a family and a support network that are challenged with the rare disease, it sets you up to deal with and handle all the other diseases so much.

I don’t want to say easier because I don’t think any disease processes easy, but in a way that is more manageable because the intricacies in the rare world, the nuances are so much more evident that when you learn how to balance those, when you learn how to have that conversation, because it is about just asking the right question and then allowing yourself to have that conversation and really listening and allowing you’re opening the door for the patient to have the conversation with you and give you insight.

You’re going to get visions of what you, one you never thought you’d have, but then can be applied to so many other things on the other end. So I like to tell individuals, that’s kind of how you’re well-rounded and that’s how you start that conversation. You realize that one where working with rare diseases is actually a doorway and a pathway to helping all the other diseases so much better. If I can get them to kind of just have that. And even if it’s at the debate, even if we disagree, when I first started, then I can kind of stroke that conversation and milk it and show them, look how this connected with this.

This was the first diagnosed or genetically diagnosed illness, or this ALS is showed the first symptoms of this in this short period of time, but it has now helped other neurological diseases. And also it brings continents and people together. When you think of different countries that have a higher rate of a rare disease than others, it brings so many varied people because you have to find the expertise because there are so few people, this is what I love. Also, there are so few people as providers who participate in that rare world, that you then have to pull them from the different corners of the world and put them at one table.

That is an example of the global conversation happening to save lives. And what other bigger mission could there be for our world than to just preserve life and save it. So in that sense, it also brings the most diverse, socially balanced and equitable group of people at a table to have something in common and then expand that conversation. We’re so good at. And when we’re dealing with bread and butter, what you and I used to call the bread and butter diseases, because those are the major things that we, the most common things we’ll see, come in to the ER, the heart attacks and all that kind of stuff.

It’s so easy because there are so many people to kind of be in your microcosm. And this is how we do it at this institution. And this is how we do it at this institution. And then you kind of get into your lane and it can be very automatic and tunnel vision. But when you look at rare disease, because there are so few, you never really have to dip into all 10 universities and bring one person from each and figure out how to make them all have a conversation in one room in 30 minutes or less

Dr. Orsini (43m 8s): so what I’m hearing then is that in order to convince pharmaceutical companies and the government to put more money into these very rare diseases, we have to convince them by having a difficult conversation that yes, this disease may only affect a couple of million people a year, but the research that I’m going to do on this is going to really turn into helping billions of people. That’s what we have to convince them. And we haven’t been there yet. And I know you have a new position at Pfizer and patient experience.

And so I think that’s a conversation that we need to have with the government where the pharmaceutical companies, who’s the low lying fruit here to get them to start putting more money into the rare diseases.

Dr. Brewer (43m 51s): So we’ve always talked about patient focus and patient centered, but can we be patient centric? Can we really put the patient in the middle and then draw those conversations to the eight or nine other buckets that are essential? So that requires taking pharma, politics, hospitals, universities, other well care. And healthcare insurance says to really say, what is my objective as the patient is related first, and then develop your progression from there.

See, and you and I being the communicator that we are, I feel like we always do that, but that is definitely not the mantra for a lot of organizations. And what I love about my new position and being at Pfizer is that it is an organization that is actively and diligently being patient centric. And we’ve had this term in medicine that has shifted it’s patient focus is patient centered, but patient centricity is I think, takes it to another level in that you’re really not just looking at the disease process as it relates to the person, but looking at the person first, that’s where wellness comes in.

You’ve got to look at the person and see how they relate to the illness and then take that then to the next level. And that should be the starting point for the conversation. As far as when you think of the extensions who I think the emphasis should be put on. I think the emphasis is it goes in every single bucket simultaneously because they are so far behind. And because they are part of the same equation, it’s like balancing a math equation. If you’re only looking at the right side of the math equation, you’re never going to get where the equal sign equals because you have to look at both.

You have to balance it out. So there needs to be an equal amount of attention, put on the prongs that lead out from the patient. But the patient gets the most attention, which is not the way we are structured right now, but it is the way that people are going through. And I feel confident because this pandemic has also elevated the patient’s voice in a sense that they are now more connected, looking for more information, have access to more information and not shy about asking the right questions.

So they’re almost demanding the right answers. Like you have to talk to me cause I’m a force to be reckoned with. And if you don’t talk to me as the patient, then you’re not going to get anywhere. It’s interesting how that comes. That conversation has also shifted, but as providers, we always wanted to empower the patient. So if we can keep that at our center, then we’re going to end up in the right place.

Dr. Orsini (46m 40s): Right now, this is audio only. So you can’t see Marge’s face right now, 350 million times per second, I’ve been analyzing Marge’s body language. And then the minute I said, let’s talk about rare diseases. Everything went up like at least a half a level. So she got excited. She was smiling the whole time. Her smile got bigger. And it reminded me of what people say about me when we talk about communication and human connection in medicine. But wow. I mean, I wish the video was on right now. You just were like, oh my God, I can talk about this all day.

This is your passion. And I can see that it is your passion and it’s not work to you because this is what you’ve decided. This is your lot in life and your goal. And I’m so impressed with, with your enthusiasm and thank you for everything you’re doing. We only have a few minutes left, but I have to ask final question. I’m not sure if I warned you about, if you’ve listened to the podcast, you know, the final question always is, and we only have a few minutes. So, but what is the most difficult conversation that you’ve had to have in your life or type of conversation if you don’t want to get personal, what can you give our audience?

Some advice on how to navigate that particular company?

Dr. Brewer (47m 51s): Most difficult conversation that I’ve had to have is delivering bad news to parents of a patient with sickle cell disease, that or being part of a conversation where the patient did not make it through what should have been a routine ed visit. How did I approach it? Carefully, Very empathic in our training.

I am also a yoga instructor, in our training, one of the things we discussed was almost the worst thing you could say to a family or individuals who have lost something is I’m sorry for your loss or say, I know what you’re going. Do you really know what they’re going through? Have you really taken the time to, never say that?

Dr. Orsini (48m 42s): Never say that don’t ever say, I understand unless you’ve had the exact same thing happened to you, do not see you understand.

Dr. Brewer (48m 49s): So for me, the first thing is I just sit and if it’s a family, I know well, which usually it is. I sit in and I hold their hands and I look at them. I stay in their space and I actually allow them to say the first thing, because the news is already evident to all of us and I want to be there for them. I want to serve their purpose. So my body language is more of how can I be of service to you right now in your greatest time of need?

My words to them is usually I am here for you. And then I wait and waiting is the hardest thing. As you said, people want to jump in about 11 seconds into it. Another conversation is all about the silence, the void that so much comes to you in the silence and the void that if you would just give it a moment to be the next best step will actually present itself. So I let the family point me in the right direction. And then as you always say, I listen, I don’t reassess what they say.

I don’t redefine it for myself. I try my best not to question it. Even my, my brain is like really did they just say that they wanted that it doesn’t matter. It’s about them right there. And I follow that lead and it usually does not steer me in the wrong direction.

Dr. Orsini (50m 10s): Great advice. The famous rabbi, Harold Kushner in his famous book when bad things happen to good people wrote in his book. When you don’t know what to say, say you’re sorry, and then shut up. And I love that. I love that. I use that in all my workshops sitting silently tells the person I’m here for you. I’m very comfortable in this situation. I’m not looking to get out the door and I’m not going to leave you. And you know, but it is human nature to get nervous and start speaking.

Especially doctors. When I’ve been doing this for 10 years, doctors get nervous. They go back to rounds and they’ll start explaining physiology. I’ll do some doctors and we’ll say, okay, tell the patient they have cancer. As soon as the patient starts crying, they start describing grading and staging of the cancer. I’m going to add

Dr. Brewer (51m 1s): I’m going to add to what you just said. There’s a famous poem. I believe it’s called transformation. And there’s a line in the poem that says, I want to know that you can sit in the silence in my pain and know what I’m going through. That’s it.

Dr. Orsini (51m 16s): Thats fantastic. Marge. This has been a lot of fun. We could probably go another hour, but I usually like to tell them is my audience. They can listen to it on the way to work. So we’re trying to limit it here, but we’ll do it again. This is amazing. What’s the best way. Real quick for people to get in touch with you. Absolutely.

Dr. Brewer (51m 32s): The best way to get in touch with me would be madfitbody@gmail.com. We’ll

Dr. Orsini (51m 37s): We’ll put that in the show notes and we’ll put all your contact information in case anyone has any questions. This has been amazing. If you enjoyed this conversation in this episode, please go ahead and hit follow on your favorite podcast platform. If you have to reach me, I can be reached at TheOrsiniway.com. Marge,thanks again. Appreciate it. When we’re going to do this real soon again. Well, before we leave, I want to thank you for listening to this episode of difficult conversations lessons I learned as an ICU physician, and I want to thank the Finley project for being such an amazing organization.

Please, everyone who’s listening to this episode, go ahead, visit the TheFinleyProject.org. See the amazing things they’re doing. I’ve seen this organization literally saved the lives of mothers who lost infants. So, to find out more go to the TheFinleyProject.org. Thank you. And I will see you again on Tuesday.

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