Live Episode - Dr. Sindy Escobar Alvarez: The Intersection of Medical Research and Philanthropy
Okay. Well, I just wanted to turn to the last portion that we have before lunch. I'm just super excited to introduce our wonderful president and CEO of the Conrad Prebys Foundation, Grant Oliphant, who has a long and storied history in philanthropy.
Grant Oliphant:Which we won't go into.
Emily Young:But we're also really lucky we did recruit him to San Diego, and it's because of his leadership that we're all here today. And also oh, of course, now I just lost- here it is. I also wanted to introduce to you Sindy Escobar Alvarez, who is the program director for medical research at the Doris Duke Charitable Foundation excuse me, Doris Duke Foundation. And, they're going to have a conversation, and we brought, Sindy Escobar Alvarez to, to San Diego because, she is in charge of, the medical research program at Doris Duke. And for those of you who have not heard of Doris Duke, maybe there are a few of you, maybe.
Emily Young:But for the rest of us, we know that they're a hugely impactful foundation that have been leading the field for decades. And we're certainly looking to them for what we can learn from them in the work that we're starting in San Diego. So I'll turn it over to you.
Grant Oliphant:Hello, everyone. It is a delight for us to be here with you, and I just wanna thank Sindy for, taking the time to come out from New York and be with us to have this conversation. I think we're already learning a lot just from what we heard this morning. Sindy, you're a fascinating person
Sindy Escobar Alvarez:Thanks.
Grant Oliphant:Because you you're you're leading a program area where you've done deep scientific work. And in talking with me just a moment ago, you described how you are you think as a scientist. And I think that's where I wanna start. How has being a scientist affected your thinking about the role of philanthropy? Before we get into any of the work and what you're doing, let's talk about how you got there.
Sindy Escobar Alvarez:You know, thanks for for that question because I think it so, shapes, many of the the ways in which I have gone about my work, but also in which I've followed and what others have built before me. And I think information helps us, even incomplete information, helps us move forward and identify where to put our energies. Right? And so, that is how it has affected. You know, I see the world through questions.
Sindy Escobar Alvarez:Everything to me is a question for better or worse because we don't always have an answer. But we always as a scientist, I can always think of, well, what do we need to know to make a next step or to decide which direction do we go in, you know, especially, when there are so many societal problems and in medical research in particularly where there are much larger, sources of funding. Right? And so as a philanthropy, we try to find what is our place, what is it that we can do here. So I think, knowing how to approach, what questions to approach and what information to gather and how do you parse out, you know, how do you how do I decide how much time do we as a team put into into answering a question or not to to find a way forward?
Sindy Escobar Alvarez:I think it's very that's how I think of of my role as a scientist, you know, in terms of questions. Right.
Grant Oliphant:So let's let's turn for a moment to the work, and and then we'll come back to the convergence of those worlds in a moment. But I wanna acknowledge that in 2023, the FDA approved the first CRISPR based cure, for sickle cell, a disease that had been understood since the fifties, Nineteen fifties for anybody who's wondering. And in a way illustrated some of the challenges that the medical research community continues to face in terms of equity and access issues. So I'm I'm just before we get into that, I'm just curious to hear you talk about your foundation's role in in bringing that breakthrough about.
Sindy Escobar Alvarez:Right. Right. And that's that's an example where there are so many issues at play. Right? There are many inequities, and I think, talk to talk about data and connecting with the communities that drive the work.
Sindy Escobar Alvarez:Right? So I think at the time, if many of you may know that, in general for developing a new drug, you know, it's not only a time consuming process, but it's a very expensive process. And so at the time, we really and this was before my time there. I actually managed a lot of the work that we supported, but the the actual position of supporting this field preceded me. But we we thought hard about can we as a as a relatively small foundation and player in medical research have a transformative role in in a disease that doesn't have any didn't have doesn't have any cures at the time with bone marrow transplant is still, you know, it was the only option if you had a match.
Sindy Escobar Alvarez:And, through talking to the community, through understanding technology, I think at the time was a big, you know, a big factor where we saw that technologies that were being applied to cancer research that were helping us understand, genetics better were not being applied, to this field that was neglected. And so we did, see an opportunity to play a role in bringing the community to a field that needed that insight. Right? And to to work with those that have been in the space for a long time to guide, well, what are the important research questions here? And we we we approached this is a with a very broad, lens.
Sindy Escobar Alvarez:You know, we said, what are the questions we need to learn more about in sickle cell disease? And we supported all kinds of projects anywhere from gene therapies, you know, and at the time they were nascent. Right? Like, how do we, get they had been gene based, gene modifying approaches, such as with viruses and things like that, but CRISPR wasn't there yet. Right?
Sindy Escobar Alvarez:And so, the but scientists were already going in that direction. And then we also supported projects that we're trying to understand how do we prevent damage, cognitive damage from stroke and sickle cell disease? And so having that, you know, similar to this room, having that, mixture of of different fields and and ways of viewing the disease, we think was very, helpful for for researchers, especially for those who are new to sickle cell disease. But fast forward, you know, less, I think, than 10 years after we began funding, that it was just a technology the moment in technology was right too. Where our resources met technology, it became clear that there was a bigger opportunity and continue to push for, curative approaches.
Sindy Escobar Alvarez:And, our funding, you know, it was the right place, right time, contributed to some of these fundamental knowledge that led to the development of what is now Casgevy. And I think I never thought, you know, I was a program officer at the foundation at the time that, that in my lifetime, I would see a therapy developed, you know, some insight move from the lab into a patient and really make such a difference. So we realized that there's so much more that went into that. Right? That we provided some seed funding, but we're, it's just amazing to see the difference that it can make in someone's actual life.
Grant Oliphant:Such a great example. I mean, I think it illustrate, you know, the way you describe it, it's a 10 year overnight success. Right? So and they and part of the- part of the genius of what you did, aside from being right place, right time, was, having prepared for that moment by putting different disciplines together. Correct?
Grant Oliphant:Right. As you think about doing that to help address equity and access issues, Because in this case, we're talking about a disease that afflicts a particular population that is under researched and has received, a lack of resources to to address this problem. What what lessons did you learn from the work in this area that help you think about addressing equity and access issues more broadly in other parts of our society?
Sindy Escobar Alvarez:That's a good question. So so what what have we learned so so many things? So one in terms of collaboration is very powerful, but doesn't happen on its own. Right? You have, I think you have to bring the right people and create the right incentives, and those incentives don't always have to be huge.
Sindy Escobar Alvarez:Right? I mean, I think it's, as somebody put at our table making the space for those ideas to happen, or recognizing that, there's a sorry. The second thing that I think to me is a learning, was something of learning is that research doesn't just happen in the context of academia. Right? That is so important to understand what is important to- what is on the other side.
Sindy Escobar Alvarez:Right? You're as a researcher, we tend to think of, well, we'll do this to help this disease or that disease that other disease, but there there are people there, right, on that side.
Grant Oliphant:Right.
Sindy Escobar Alvarez:And is that something they want? You know, I think that after, you know, we've seen the approval of now a couple of of new curative approaches, we have also seen patients say, well, sickle cell disease is part of who I am and my identity. Like, are you trying to remove part of my identity by by giving me this new gene? You know? And so, it raises important questions.
Sindy Escobar Alvarez:Right? Or or as researchers, we think this is a huge is a great cure, but we didn't think about how that affects fertility, for example. And fertility of a population that already has limited access to preservation of fertility to begin with. Right? And so, it does it does to me I think some of the learning is that we need more perspective as we approach a problem.
Sindy Escobar Alvarez:It's not an issue that science alone can't solve. Right? That you really need others to shape. What is the outcome you're after? Is it really just a cure or what else is there to it?
Grant Oliphant:When I think about the traditional image that I as a nonscientist have of of of how science gets done, it sounds as though you're just describing a process that is much more iterative and in contact with community than the image I hold in my head of of the lone researcher in the lab trying to, chase down a theory. Is that part of of Doris Duke's philosophy about changing the biomedical research enterprise?
Sindy Escobar Alvarez:So that's a great question. It hasn't been. I think that we have so I am a researcher. You know, I used to work in a lab, and and I think many of us who are or I speak for myself, I suppose I can say. But, you know, when I came to the foundation, I've been there my role has evolved over the last 12 years, but my approach is very much that of a lone researcher.
Sindy Escobar Alvarez:If we support this great idea that you had here, then, you know, 10 years from now, you will be leading a great lab into great things that will help society. And I think and now as I have learned more through being in philanthropy, and I realized, well, that's not the whole picture. Well, we helped you get a great career, but we we still have these problems. And there are many other people who are trying to solve the same problem who researchers might see as competitors. Right?
Sindy Escobar Alvarez:And where the input of the community doesn't always come in. It's also made me think about how we support researchers who are at certain places. Right? And have certain, we we tend to favor more some research questions than others where community hasn't always been part of and where societies is communities is an input from society, I guess, is how I think, where where that hasn't been the norm. Right?
Sindy Escobar Alvarez:And and that is changing. Right? So, PCORI, for example, has really done a lot of work to to understand how do we productively bring research in communities to to identify the important questions and outcomes. And so it is something that that I think is is changing about our thinking at the Doris Duke Foundation of what role can we have in, approaching research questions in a more, society with more societal input. Right?
Sindy Escobar Alvarez:With with that in context because research is not alone, cannot make change.
Grant Oliphant:Well, thank you for that that perspective. I'm, you know, I'm sensitive to the to the fact that it in in your role, you're trying to tackle a range of inequities that you see in the field. What do you think are the priorities? I mean, when you go to work every day, what what what dragon are you gonna slay next?
Sindy Escobar Alvarez:Exactly. That that's a great question. So so this is you know, it can as we heard from the discussion this morning, there are many issues. Right? And where do you put your energies?
Sindy Escobar Alvarez:Right? And I think as we evolve our thinking, something that we that I think a lot about is what are those places where our support and not necessarily being dollars, but where we convene a table, where we have a discussion, or maybe we support advocacy. What what are those opportunities where our it's almost like a a match. Right? Like, our our input of energy is a match that starts a fire that fuels a whole, car or a whole rocket ship.
Sindy Escobar Alvarez:You know? I it's because as foundations, our dollars are small. Right? So if we fill a gap, then we are stuck filling a gap in one place, and we're not really changing the overall condition. So so I think about that a one of what is the bigger opportunity that could really transform a system, and who are those champions that can help us identify, well, what are those?
Sindy Escobar Alvarez:Right? And I heard some ideas here today of, we can approach a model, but how do we make it is the word sustainability. Right? So where where are those opportunities? We're we're not talking about a patch, but, something that might be a heavier lift or might be seen by by others as your approach might be it's like a crazy idea.
Sindy Escobar Alvarez:Right? We're doing some crazy ideas right now, but I'll follow in some crazy ideas. But where
Grant Oliphant:Well now, you know, I gotta ask you about that.
Sindy Escobar Alvarez:Yes. So we I think I'm attracted also to difficult problems. So that and maybe as a scientist, you know, maybe scientists can relate to this here that, we want to find what was the right answer here. Right? And that that drives us.
Sindy Escobar Alvarez:Right? And so one of the for example, one of the ideas that we're pursuing recently that came up actually in conversation today here is how do we think about race and ethnicity in the context of research and health? And how that has led to inequities. Right? Just how we communicate about the association of race with health outcomes.
Sindy Escobar Alvarez:How does this shape our thinking and further stereotypes that are harmful for equitable clinical care? And that's the idea, but what we're actually trying to do is can we change research practice so that we are more race conscious. Right? So that when I design an experiment, and encounter race as information, I make best use of that information in the context in social context. Right?
Sindy Escobar Alvarez:So that as a researcher, we don't further inequities because there are examples where -sorry. This is abstract. Let me know.
Grant Oliphant:This is I think this is exactly on topic.
Sindy Escobar Alvarez:That, we think there's there's evidence that as a research community, we make inferences about race and ethnicity that are really as as if they were related to biology or outcomes in medicine and or they relate to outcomes, but as if they were related to biology when they're not. Right? They might be indicative of an exposure that because of experience of race in this country, you you have a you, you know, you're more likely to have a disease, for example, or have x or y or z. But, the way in which research has used that information in some cases has not been rigorous. Right?
Sindy Escobar Alvarez:We make inferences erroneous inferences about biology, but, also, we have incomplete data and we still make inferences about race and ethnicity. And that has gone unchecked. Right? And there there are tools of medicine that many of you probably use every day, anywhere from measuring kidney function or pulmonary function to interpreting neutrophil counts that have an element of race in them. And we don't I've learned all of these, and I find it fascinating because every day I learn something new.
Sindy Escobar Alvarez:How we assess cognitive function is normed by race. And so that actually has implications for patient care. Right? And so we are trying to bring light to that and to the research community to say what checks and balances can funders, you know, not just nonprofit funders, but the NIH, others can have in place to make sure that that as a research community, we follow rules that further equity.
Grant Oliphant:Let's stay on this for for just a moment longer because I, as I was listening to you, I was reflecting on the, kind of broken cultural moment that we're in where discussions around race are suddenly volatile in a way that can make it difficult to discuss the applicability in in various disciplines. And, you know, I'm thinking, philanthropy has been paying attention to a lot of cases around affirmative action, the Fearless Fund case, and, you know, our ability to concentrate resources on particular populations.
Grant Oliphant:When you talk to people to help them understand why it's important to look at race as a factor in better research, What is the case you make to them?
Sindy Escobar Alvarez:It's about better science and better tools for medicine. I think it is and for health. It is about, giving the treatment giving the health treatment that everybody deserves and needs. Right? Because what we see right now is because of how you look, because of how you you may self identify or others may identify you in terms of race, you may be getting differential treatment that doesn't further your own health, especially if you're black or brown in America.
Sindy Escobar Alvarez:And so it is a matter of health care and medicine medicine and research serving equally or equitably, I guess, is it right? Because right now, we are if if I'm black, my and depending on the hospital I go to in the US, it might be underestimated how well my kidneys are functioning. And that may keep me from getting care for kidney function. Right? And so it is a matter of of of of health for Americans, you know, especially those who have, experienced unequal treatment for so long.
Grant Oliphant:Thank you. I I just wanted to draw that out because of how important that I think it is to keep saying this, that the work you're doing, and that so many of the scientists we're privileged to fund and so many of the frontline clinicians that we're privileged to fund as well are doing is trying to be sensitive to the special, communities and needs that they're serving. And if you're oblivious or blind to that, it ends up being bad for everyone. So I just appreciate you're you're really focusing on that. Let's talk for a moment about caregiving.
Sindy Escobar Alvarez:Yes.
Grant Oliphant:Because I know this is an area you're focusing on. So can you tell us a little bit about what you're doing there?
Sindy Escobar Alvarez:Yes. So so we are, of course, you know, we similar to to your foundation. So we are, building a more creative, equitable, and sustainable future. So we think of all all aspects equity. What how does it intersect our areas of work?
Sindy Escobar Alvarez:And for caregiving, I think something that we all experienced or saw was really an very visible during the height of the pandemic is how unsupported caregiving affects our productivity as individuals in our, you know, in our professions, right, or in any any activity that we have. It's not the caregiving. It's the lack of support for caregiving. Right? And that affects us.
Sindy Escobar Alvarez:And how we saw this very acutely is that we supported physicians who also do research. These are people that, at a minimum, they have already 2 jobs. Right? They're doctors and they're researchers, and they're also people. And so what we knew before the pandemic is that, women tend to fall out of- -and this was in the context of academic research- that women tended to fall out of the workforce at higher rates, earlier in their career.
Sindy Escobar Alvarez:Within I think it was something it's something like within the 1st 10 years of faculty faculty appointment, 40% faculty fall out of workforce, and many of those are women. And there are many factors. Right? We don't we don't fully understand, but we heard from from many researchers that there was this comp another happy word is their caregivers and that if they sometimes research had to be cut out of their activities because they had to show up to the clinic regardless. There were doctors.
Sindy Escobar Alvarez:And if they had a sick parent or sick child who had chronic illness or, you know, they had elderly parents, they also had to take those hours. And so research was the one thing that had to go. And so we thought, well, why don't we do an experiment? Here's, again, you know, our our research hats of can we, prevent attrition, of faculty from research careers by supporting identifying who are caregivers and giving them additional support for research. So it is we give you extra a little bit of funds, you know, and, I mean, not enough to cover a technician for a year or 2 so that they could go on and be the humans the caregivers they are or they were at the time and have their research continue.
Sindy Escobar Alvarez:So, so we we found that this is a way, and and studied. We have we gave a grant to a researcher, doctor Reshma Jagsi, who was then at the University of Michigan and has since moved to Emory, who studied gender equity in academic medicine. And doc she documented that this actually helps change the conversation at institutions. Right? So it's not just addressing, need in the moment for a researcher, but it helps in the context of the institution change the conversation from you are not really committed to research to we understand you're a caregiver and you deserve more support so that we can continue to benefit from a science that you are capable producing.
Sindy Escobar Alvarez:So that's that's how we have been supporting community.
Grant Oliphant:It's a it's a wonderful initiative. And I, so thank you so much for for demonstrating the value of that work. It leads me into the question of other ways in which philanthropy can make a difference. And you know, obviously, one of the notions with private philanthropy is we can invest in ways that are different from government funds and from business, where we can take risks over a longer period of time, etcetera, etcetera. Where do you think private philanthropy or where do you wish private philanthropy would do more work in this space to promote- to genuinely promote community well-being?
Sindy Escobar Alvarez:Well, so I am a little biased.
Grant Oliphant:That's okay.
Sindy Escobar Alvarez:I'll preface it with that. To come back to your comment earlier, right, that there are areas where we can go without fear.
Sindy Escobar Alvarez:Right? The the where we can really bridge different perspectives and try to find, solutions. I think something that I wish we would do more of is, recognize that research happens in different contexts, not just in academic settings. Right? And this is something that we've heard here a lot today that there's a lot of opportunity, but where the incentives are not there, where I think that we will take it it'll take many different players, not just philanthropy.
Sindy Escobar Alvarez:But I think that what we as philanthropy can do is try to eliminate that there is this new frontier of innovation, that that there is possibility. And maybe if the opportunity and possibilities aren't visible and clear, have those conversations of how how do we eliminate what what are the opportunities here? You know, how essentially, being the ones that bring awareness to the research communities and others who need to be involved to change our focus from sick care to healthy care. Right? And and working together.
Sindy Escobar Alvarez:I mean, I think sorry. That's another thing that I wish we'd do more as philanthropy is, seeing where those opportunities are that we may do things differently, but where we have a common goal that we can elevate issues that are of societal importance together. Right? Because I think that makes, a bigger hopefully, it has bigger impact.
Grant Oliphant:Well, I I I love your framing of a shift from sick care to healthy care, and that one of the ways of getting there is through this broader level of collaboration that philanthropy in theory can help bring about. You know, I'll confess. We have in this room with us a set of leaders who are are bridging the worlds of being in community providing care and doing the seminal research that is driving, progress forward nationally and globally on on some of the most pressing issues- research issues of our time. And I confess that when when we first had the idea, someone had the idea of putting this group together, I thought, how's that gonna work? So we don't we don't always naturally lean into putting groups together, but why is this healthy?
Grant Oliphant:Why is this important for the sake of better medical research and also better care?
Sindy Escobar Alvarez:For many reasons. It is important for many reasons. I think one of them is what we we truly understand what are the what are the hurdles, right, and where are the opportunities. So some of the conversations that I heard were, you know, how how do we make data more accessible. Right?
Sindy Escobar Alvarez:And, yeah, I'm looking at you here. We saw a table of how how does the data really flow within a hospital and health system, and and what are the the hurdles a researcher may have, for example. So one of those are very, very, like, in the weeds. Right? So some of those opportunities.
Sindy Escobar Alvarez:But I think some of the larger opportunities are also to begin to see that all of it is important. Right? It's not just me understanding how a cell, you know, regulates growth for cancer is important, but is how does that really make it how does the discovery makes its way to the clinic? Or is that really the as a researcher, I think I it illuminates what are the real needs that that clinicians have today. You know?
Sindy Escobar Alvarez:That maybe my efforts could be oriented even if in a little way, you know, in a in a begin to to to be better informed- inform more about what are the on the ground needs for clinicians, for example. So research that I think understanding that there's different types of research that I needed to move health is not all about discovering the new pathway to develop a new drug.
Grant Oliphant:Right.
Sindy Escobar Alvarez:But that there are other problems that really need our, intellectual curiosity to move them forward. I think that that is so important for these spaces to to illuminate what are other types of research questions that are also important and that we need to put our energies to. And I think for us as philanthropists philanthropies is how do we elevate that as those ideas as some that need resources nationally. Right? Because I think another conversation we've had is how do funding models help further those ideas or or or not help.
Sindy Escobar Alvarez:Right. You know? So I think we can carry that voice and say, how can we change the funding structures? And maybe that's, again, a difficult problem, but I don't think it's impossible.
Grant Oliphant:Well, it's one we can actually maybe do something about
Sindy Escobar Alvarez:Yes. Exactly.
Grant Oliphant:So, in terms of in terms of bridging the worlds of of, community health care practitioners and medical researchers, what what would you hope to encourage, among these among the folks in this room and the larger community nationally in those worlds? What do you hope to see more of?
Sindy Escobar Alvarez:I hope to see more understanding that health is not a collection of disciplines. Right? I think as a research community, we may tend to see the problem only very narrowly through, I'm a sociologist or I'm a biochemist or and it's true that we bring that specialized knowledge, but at the end of the day, we need to focus on the humans. Right? That and what are you know, it's so we have mental health.
Sindy Escobar Alvarez:Right? Is it an issue of it's an issue of the brain, or is it environmental, or is it all? And how do we bring all of our abilities around the problem rather than around my own career or my own academic path or, or the field of x or y or z? Right? So I so I wish I'd we'd see more of that centering around what are the, somebody said on my table, the outcomes we want to see and the the the problem, and how do we bring all of our abilities to those.
Grant Oliphant:So as you heard the conversation this morning, among the leaders in this group about the challenges that they're facing and the opportunities that they see. You're looking at it from a national viewpoint where you've talked with folks all around the country about this. Was there anything that stood out to you in this conversation as especially, emblematic of what everybody is talking about? Or and was there anything that stood out to you as unique to San Diego?
Sindy Escobar Alvarez:That's a good question. And I have to say we're starting to have this conversation, so we hope that others will join in in the for later in the fall. But from what I hear a lot of is recently is the focus on communities as the source of the information for what is important and what is important now. I think that is a common thread, of what I have heard. And what is, unique to San Diego, I think that there's just all the the recognition that well, maybe this is I have to say I'm coming from outside of San Diego.
Sindy Escobar Alvarez:So, the recognition that there are communities already here and in this room that could, they could identify together what is it that's needed. I think that is something that and and there are unique, unique problems that we heard about related to the nearness to the to the to the border that we're seeing this crisis of immigration, right, crisis, climate crisis. Right. I think that's something that I heard here today.
Grant Oliphant:Great. Thank you. Well, this seems like an opportune moment to turn to San Diego for, for some questions. What would you all like to hear from Cindy or from me?
Crystal Page:And we have a mic just because we're recording.
Guest 1:Thank you so much for your insights. I was curious how you go about engaging politicians and policymakers. I just got back from a trip to Capitol Hill, for a congressional life sciences demonstration. And I found it enlightening. And, and very interestingly, I saw a lot of young people working.
Guest 1:The staffers in DC are very young people who are very eager to learn more about science. They have mostly political science backgrounds, but I found that very valuable to try and explain the science to them, and they were very eager to learn it. So I wonder how you engage.
Sindy Escobar Alvarez:Thanks for bringing that up. So I'm a I'm a scientist, so I I am, very much in a learning curve on that, and I think it's something that philanthropy could do more of, you know, engage with, and, of course, we have some limitations, but I don't think that, we have is entirely exclusive. You know, we have to, find ways to to interact with policy makers, But I think it's something we need more of, and what we need more of is also those of you who are doing the work because I think, you know, I can say it from my, you know, 5th Avenue office where I read about all the work that you do, but where the the direct experience is is is so important to put it all into context. You know, we have been talking a lot about, at the foundation about national funding, for health and how that flows and what are the cultural barriers to changing that. And I and I think that we need examples.
Sindy Escobar Alvarez:Right? What does that look like? What does a different funding ecosystem look like? And, what are the real challenges? Right?
Sindy Escobar Alvarez:Or like we heard here is, you know, we we can embed researchers into federal qualified health centers, but then the funding is gone. So those are such tangible examples that I think we need more more ears to hear about. And then so we we invest quite a bit more recently in communications. We're very, very keenly aware of who needs who who could hear what is the message that we're, trying to spread and who do we need to engage. So we do engage more in, communications driven, in in marketing and influence step strategies.
Grant Oliphant:I I think that's such an important point because sometimes in philanthropy and and I think in in various disciplines, we make an assumption that, oh, once we know something, everybody will just do it. Right? Right. And and it's the last thing that happens. You know, what we what we actually have to figure out is when we know something, we have to collect the data and we have to we have to verify what's true.
Grant Oliphant:But then we have to figure out how to tell that story so that it's compelling in a way that politicians have to pay attention to and others as well. So thank you for that question. I think the communications piece is really important. Alright. Other questions?
Grant Oliphant:And if you wouldn't mind identifying yourself.
Jimmy Figueroa:My name is Jimmy Figueroa and I'm with TrueCare. I have a question about the development of the sickle cell treatment and the implementation at the community level. With, our direct service providers, how has that process gone? What have you learned? I know you mentioned a little bit, about some of the challenges that, were not expected at the time.
Grant Oliphant:And is it affordable? Is the treatment affordable for our communities?
Sindy Escobar Alvarez:Yeah. So those are good questions. And and an example of how I think different players interact with the the issue different points, and, you know, where most of our energies went to were, into developing and contributing research dollars to develop that treatment, but where there are real real challenges in access. I think the cost is estimated something like $1,000,000 or something like that. It was equal it's you have to essentially get a bone marrow transplant plus the transfer of edited cells.
Sindy Escobar Alvarez:Right? And it it is something that is getting a lot of, thought, I think, by people who know know a lot about these. One example is the innovative genomics, IGI, Innovative Genomics Institute, I think, which is just north of here, at UC Berkeley Mhmm. Headed by Jennifer Doudna, who, was one of the, you know, the discoverers of CRISPR Cas9. And as a scientist, I think this is just a is such a great example of how this group is thinking, not just about how do we develop therapies, but what models can we build for commercialization that take into account access.
Sindy Escobar Alvarez:Because right now, you have to go to a specialized center to get my understanding is, to get this therapy. And it is not accessible to to everyone. Right? It's, because of cost. You know, we have to insurance comes into play.
Sindy Escobar Alvarez:So there are organizations that are doing a lot around that. You know, the American Society of Hematology has been looking at, models for how to make this more accessible. And it is an example of just having the cure wasn't enough. Right? It isn't enough to just have that.
Grant Oliphant:Other questions? There's so much animated discussion. There's gotta be a couple here.
Guest 2:Just curious as Do you guys choose what's important or what questions to tackle. Can you shed a little bit of light on that process? And it's, like, who do you include in in those conversations? Yeah. Because I think that's where you guys have a lot of power of who you bring to the table.
Guest 2:So I was curious if you could speak to that.
Sindy Escobar Alvarez:Agreed. And that's a that's a very good question because, you know, we we might just look at what's in front of us. Right? Or what's in front of my computer, I guess, I should say, or, or what our own interests are or our own biases. And and I think some of that growth process in philanthropy as a scientist is seeking out different perspectives and knowing we're engaged in making sure that we're not just listening to the same group.
Sindy Escobar Alvarez:Right? So, something that is somewhat new to us is we are when we're exploring a new sort of frontier, you know, sometime, in this case, the intersection of, research and care, We're doing it publicly. So we are we are setting out, and I'll be happy to share that and maybe you can distribute it to this group, a request for proposals where we're really trying to listen, you know, in conversations like this. What are the important questions? And we started with a thought of thinking with a thought of, is do we share this with academic institutions?
Sindy Escobar Alvarez:And as as we hear more of these conversations, so that now that's doesn't feel right. Right? I think it's it's on us to to seek out different perspectives, and it is it's tricky.
Grant Oliphant:Others. Yes.
Guest 3:Am I on mic? Yep. For a second. Before, but I am fascinated by it, which is the use of race and ethnicity in clinical algorithms, since I I work on a project that's essentially an implementation science project with all the clinical groups and FQHCs here in San Diego County about heart attack and stroke prevention. And the number one tool we have in our tool kit is the ASCVD what we call the ASCVD risk calculator, which for those of you who don't know, calculates your 10 year risk of having a heart attack and stroke.
Guest 3:It is meant to be used at a population health level. And one of the factors that goes into the little calculator, you can all download the app and see what your own 10 year risk score, is your race. And there's been a little debate about that, about whether or not it's age, sex, race, and then, like, your cholesterol, your, blood pressure, etcetera. And does race belong in there or not? And I'm really, really curious about that and your perspectives because we now know that all of a sudden American Heart Association is changing their mind, maybe, and saying race doesn't belong in there.
Guest 3:And what is how do we think about race in clinical decision making? I think that's a really fascinating area where there is a bridge very directly between the work you're doing and clinical care. So I'm fascinated.
Sindy Escobar Alvarez:Yes. And and something very important you touched on there, many things, is an organization that set standards of practice, you know, of how that is perceived. Right? They changed their mind. But I think that how we view this is is a con science evolves.
Sindy Escobar Alvarez:Right? And science is exists in the context of its time. And so at the time, maybe that was the best available information we had. But now we know that categorizing people and you and often isn't, like, 4 categories. Right?
Sindy Escobar Alvarez:You're white. You're black. You're Asian. What is the other? I don't know.
Sindy Escobar Alvarez:Right? Is that really a way to categorize human diversity? You know, it's it's imperfect. Right? At the time, maybe he gave us some information that we thought would make it easier for a clinician to assess our 10 year risk of heart disease.
Sindy Escobar Alvarez:But now we know that that's not the full picture. Right? And so we also know that how we incorporate race, as as I mentioned earlier, can further stereotypes and can further misconceptions about health and illness. And at worst, you can actually change, their recommendation medical recommendation for worse for the patient. And so I think this is an example where it's complex.
Sindy Escobar Alvarez:Right? Where the factoring in of race was being made to account for a possible higher risk of disease in certain groups, racial racially categorized groups. But there are other examples where, there's no justification for that and where the factoring of race can underestimate your likelihood of having a a an illness. And that's when we get into trouble. Right?
Sindy Escobar Alvarez:Where the consideration of race was not helpful, and in fact, is harmful.
Angelina Renteria:Hello. My name is Angelina Renteria. I'm with Indian Health Council, and I'm so appreciative that you brought that up and for the additional question here. And, I I would like to make a comment and then a question, in terms of research, race based research and the impact in tribal communities, for example. And, as a clinician, the interesting way to navigate that information, especially if it's not fully understood by a community member, for example, in native communities, we are one of the communities with the highest prevalence of, and I'm not going to name all of the things, but diabetes, obesity, substance use, domestic violence, and the list just continues.
Angelina Renteria:And so in, creating an environment where we're advocating for one's health, and almost sort of trying to balance out what the community hears about themselves, where they have now this belief that I'm doomed. And there's this really fatalistic mentality that no matter what I do, the likelihood of me, you know, dying from obesity, CKD. You you we again, the list goes on. It's a unique dance of how do we inspire, staying ahead of the statistic and, for those that are really making an effort to make sure that we steer clear of all of these things that we're told are preventable, is there an impact there? Now we have additional stressors.
Angelina Renteria:I I'm more likely to have all of these things happen in my family because of my race. You know, I'm I would really love to know is there is there research that's studying the impact of these things? And for those that are active actively pursuing and and trying to, you know, break the cycle of, I'd love to hear more. You know, are there opportunities to study this? Because we are hearing from our tribal communities who are trying so hard to get ahead of the statistic and the stress related.
Angelina Renteria:You can clearly hear and feel it from those community members. It's it's there. It's prevalent. Just I don't know if I asked my question clearly.
Sindy Escobar Alvarez:But Yeah. No. I I really appreciate your your, I mean, expanding on how how an inference translates into what is interpreted and heard by community. Right? And and this is what we're hoping that the re we can get to a point where the research community does a better we all do a better job, right, of how do we just because you have an observation is is a real observation, but it doesn't determine it's not causal.
Sindy Escobar Alvarez:Right? It's it's not it's not because of your race. You know? It is because of what your your experience of race has exposed you to. Right?
Sindy Escobar Alvarez:And so, I think reframing that is so important. There was a recent paper, of researchers who looked at, a brain bank of, African American donors in the Maryland area. And they were trying to study the, is is the, signaling in the brain, and this is post mortem. Right? And they had disease like, cognitive, degenerative diseases like Alzheimer's and so on.
Sindy Escobar Alvarez:Is it different than a brain, that didn't have from a person who have that disease? And at natural conclusion in another time, it might have been being being, you know, if because you're African American, yours you're x y z, you know, you see that, there is this association with with race. But I think knowing better now, you know, understanding the interplace interplay of genetic molecular, you know, signaling and, and exposure because of a racial group. You know, the the conclusions are different and how that was communicated of the exposures, which are preventable, have resulted in this observation in in this particular cohort. And so to report yeah.
Sindy Escobar Alvarez:So I think we can do better about communicating, and that is not causal. Right? I think this is this is one need to break through of saying it's not, it is exposures that you have had as a community and that are preventable. Right? That that hopefully is not yeah.
Grant Oliphant:Alright. I think we have time for one more.
Guest 4:Thank you. My name is Razel Milo from University of San Diego. There's a lot of talks about artificial intelligence. Do you see that artificial intelligence as a tool that we can use to bridge health equity?
Grant Oliphant:I do based on on what I am hearing about, AI tools that are under development in the health care space that they are able, for example, to get past some of the cognitive biases that humans bring. So they they're an additional tool for practitioners to see past what may be their own unseen biases, and that may address some of these issues around race specific treatments and their applicability. And so I think I think it's hopeful in that respect. The downside is that we've also seen with AI that the tools are only as good as they're trained to be. And and I think getting the bias out of the machine is gonna be an ongoing challenge for for this work.
Grant Oliphant:But I think it has I do think it actually has great promise in that regard. Would you agree?
Sindy Escobar Alvarez:I very much agree. And I think it it especially with biases, I think this is a community that is thinking of that, an equity from the start that there, there are groups that are thinking of the ethical implications and how to get ahead of it so that we don't find ourselves to the problem we have with these other clinical tools where then they're embedded in medicine and just causing i trouble.
Grant Oliphant:So on that hopeful note, I'm gonna ask you a final question, which is, which is how you see the the arena of, philanthropic funding for medical research and caregiving evolving over the next decade. What does Doris Duke, think is the is the art of the possible over the next decade?
Sindy Escobar Alvarez:Well, we really think we need to work together. So I imagine in 10 years, philanthropy will look different where we are, moving beyond the individual missions to our common shared understanding of problems and applying our missions to common ground. Right? Where, we have moved beyond this perennial discussion of do we need research a or research b? No.
Sindy Escobar Alvarez:We need it all. And how do we get how do we really put our energies into furthering research that's important and elevate the prestige of that, which is not currently considered the what what is going to give you a Nobel prize. Right? I think we I hope that in 10 years, we have changed chipped away at that of what is prestigious research to what is important research to pursue.
Grant Oliphant:I think that's a beautiful vision. So on that note, Sindy Escobar Alvarez, thank you so much for being here for this conversation and contributing so much, and to our, our leaders in the room as well, thank you for being part of the conversation.
