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The Covid epidemic laid bare two major structural issues.  First, Black and Latinx persons experienced much higher rates of mortality than other groups.  Second, as we discussed in last week’s podcast, older adults, particularly those in nursing homes, were far more likely to die than younger individuals.  These are structural issues because the fundamental causes of these issues were not biological issues, they were social.  These worse outcomes were not due to differences in genes, they are due to structural racism and ageism. 

In today’s podcast we talk about the intersection of racism and ageism.  We use the Covid pandemic and lack of diversity in trials for recently approved Alzheimer’s drugs aducanumab and (to a lesser extent) lecanemab as springboards for discussion.  Our guests Tim Farrell, Ramona Rhodes, and Nancy Lunderbjerg wrote an article in JAGS on this issue, and Sharon Brangman wrote a separate JAGS article on the need to achieve diversity in study populations. In a third piece, Ramona Rhodes wrote about efforts to improve diversity, equity, and inclusion at JAGS (in the journal itself, including content and editorial leadership).  The article was titled, “Change is coming” – which also gives you a hint as to today’s song request.

One final note: at the start of today’s podcast we thank one of our generous donors, Meg Wallhagen, and ask her why she donated to GeriPal.  A prior guest on GeriPal, Meg is a tireless advocate and researcher for hearing impairment issues affecting older adults.  She has a study that is open to recruitment for any adult – hearing impaired or not – please see the blurb below to learn more and participate.

Enjoy!

-@Alex Smith

 

From Meg Wallhagen: The Federal Drug Administration (FDA) now allows hearing aids to be sold Over-the-Counter (OTC-HAs) to adults with mild to moderate hearing loss. We – Meg Wallhagen from UCSF and Nick Reed from John Hopkins University – are interested to learn what people like you know about OTC-HAs and if you would consider buying them. The survey should only take about 10-20 minutes to complete. If you are willing to consider taking the survey, please click on the following link to learn more. https://ucsf.co1.qualtrics.com/jfe/form/SV_9ZbReHYH72m82gK


Eric: Welcome to the GeriPal podcast. This is Eric Widera.

Alex: This is Alex Smith.

Eric: And Alex, who do we have with us today?

Alex: We are delighted to welcome Ramona Rhodes, who is a geriatrician and palliative care doctor, and member of the Board of Directors for the American Geriatric Society. Welcome to the GeriPal Podcast, Ramona.

Ramona: Thank you.

Alex: And speaking of the American Geriatric Society, we are delighted to welcome Nancy Lundebjerg. Hopefully I said her name somewhat close. She’ll correct me if I’m wrong — who is CEO of the American Geriatric Society. How’d I do, Nancy?

Nancy: You did great. No need for me to get rid of that pesky J in my name.

Alex: And we are delighted to welcome Sharon Brangman, who is a geriatrician and chair of the Department of Geriatrics at Upstate Medical University. Welcome to the GeriPal podcast Sharon.

Sharon: Thanks for having me.

Alex: And we’re delighted to welcome back Tim Farrell, who was previously on a podcast with Doug White about, should we use age as a factor in allocating scarce resources. Tim is a geriatrician, associate chief for age-friendly health at the University of Utah, and chair of the AGS Ethics Committee. Welcome back to the GeriPal Podcast, Tim.

Tim: Great to be back. Thanks, Alex.

Eric: So we’re going to be talking about the intersection between structural racism and ageism, but before we go into that topic, Ramona, I think you have a song request for Alex.

Ramona: I do. It’s called A Change Is Gonna Come by Sam Cooke.

Eric: And can you describe why you picked that song?

Ramona: I grew up listening to Sam Cooke, even when he was part of a gospel group called The Soulsters, I believe. I just think that this is a very appropriate song for all of the efforts that are taking place within the American Geriatric Society, starting with this paper, this structural intersection that we’re going to be talking about between structural racism and ageism, so I think that it’s really appropriate.

Alex: Thank you. I love this song. I had to move it down two whole steps, and we’ll see if I can reach it. I wish we could hear you sing it, Ramona. I know you’re a singer. One of these days. All right. Here we go. Here’s a little bit.

(singing) “I was born by the river in a little tent. Oh, and just like the river I’ve been running ever since. It’s been a long, a long time coming, but I know a change is going to come. Oh, yes it will.”

Eric: Thank you, Alex. Thank you, so let’s dive deep into this topic. First, I just kind of want to know, so you’ve got a paper published in JAGS on exploring the intersection between structural racism and ageism. What was the genesis of this project?

Nancy: So Eric, this is the part where I get to talk for 45 minutes, and everyone else just nods along with me-

Eric: Yeah. You’ve got a minute to describe the genesis of this project, Nancy.

Nancy: And they’re going to cut my joke out, I bet you too. It started, actually, following the AGS statement that followed the murder of George Floyd. Like a lot of organizations, corporations, professionals, societies, we put out a statement that basically said we stood against violence and other forms of discrimination following his murder. We included in that statement an intentional, very small footprint, but something that’s said and committing ourselves publicly to doing more, to moving beyond just making statements, to taking action, which I will say was a big step for the organization, like the American Geriatric Society, which is really focused on another big ism, ageism, which is under-recognized in healthcare; sort of that little thing that nobody likes to talk about, and as [inaudible 00:04:34] said, the only ism where we act against our own future selves and all of us do it.

So it was a pretty bold move on our part to say we’re going to take on these other isms, and over the course of the following months, we talked amongst ourselves and decided that we wanted to proceed along two tracks. One was to start to take immediate actions, which I think we’ll have Sharon talking about a little bit later in terms of increasing diversity and research, and the other was to sort of start to define the intersectionality of ageism with other forms of discrimination, and with an intentional focus for this first paper on racism and structural racism. I think that, as Ramona will talk about and elucidate a bit further, is just a recognition that in this country we have traditionally, and to my mind continue to do so, cause serious harm to Black people, that you can see that play out within healthcare in ways that are both big and small.

Eric: Absolutely.

Nancy: So that’s where it started, and I’ll actually stop there. I was going to stop at that point.

Eric: So I’d love to hear from Tim and Ramona, how you got involved in this. I had a chance to read the paper a couple times, including last night. How did you get involved in this project, and why did you decide, “Let’s start off with a publication”?

Tim: Yeah, Eric. First of all, thanks again for having me. I traced my involvement back to Nancy approaching me to take this on, and I think, having been involved in a somewhat similar project, Alex, you alluded to the previous podcast with Doug White on rationing and resource allocation, and so many of those policies had ageism sort of just embedded, these sort of age-based cutoffs and tiebreakers. So I think it was kind of a natural segue, in some ways, to be involved in this paper that more explicitly took on ageism kind of head on. Also, I enjoy kind of shepherding lots of cats in these larger writing groups. We had quite a number of authors that sort of represented a pretty broad and diverse spectrum of the [inaudible 00:07:24] membership.

Eric: Yeah. How about from your perspective, Ramona?

Ramona: Well, I’ve always been interested in health equity, always been interested in looking at disparities, and the disparities that I have looked at most often have been for patients at the end of their lives. I was involved in the ethics committee with Tim, and we started creating a series of webinars with an awesome group of collaborators that addressed implicit bias. Then, Nancy mentioned the possibility of creating this framework. I think it was titled a framework at the time, that kind of examined this more in depth and the way that it intersected with ageism, so that’s kind of how my involvement came to be. I was very excited about the opportunity, and very excited about everything that’s going on at AGS, so when she asked me, I said, “Yes, definitely.”

Tim: By the way, if I can just chime in that Ramona and I kind of go way back to when I was a fellow and she was my attending, so to have the opportunity to work with Ramona in a different way than in the past, and she also mentored me on the ethics committee when she was chair. So there’s sort of a lineage there, and I owe a lot of my knowledge of this topic and increasing understanding over time to Ramona.

Sharon: And just to follow-up on what Nancy said, I think the thing that’s really distinct here is that it’s action oriented, and so many organizations, you don’t even hear anymore about it now that George Floyd issue has kind of faded away.

Eric: You sent out your press release. You’re done.

Sharon: Yeah, and so it’s like check the box, say that zero-tolerance stuff, and then you’re done. But one of the things I really respect with Nancy’s leadership and the AGS is that it’s action oriented, because we don’t need any more needs assessment. We don’t need any more studies that highlight the disparities. What we have to do is chip away at these big, behemoth issues that are still strangling us. And so we need an action-oriented approach, and I think that’s what you see in this paper.

Eric: Yeah. Well, can we start off with just doing some basic definitions for me, starting off with structural racism, Ramona? How do you think about that term?

Ramona: So when I think about structural racism, I think about it in terms of things that are kind of baked into policies, into laws, into unwritten things, things that are entrenched in practices that target or disenfranchise people based on the color of their skin. And as we’ve already talked about, those things can have long-standing, far-reaching implications. And I could talk about this all day, but an example would be redlining.

That’s definitely an example of systemic, structural racism, in that people of color were kind of siphoned off geographically to places where other people would not want to live. And again, that can create a food desert, which can create health issues for patients and their families, so that’s an example of structural racism, but again, it’s baked into laws. It’s baked into people’s belief systems, who ultimately make laws and make policies, and it can influence healthcare. It can influence education systems. It can influence a whole bunch of things and have deleterious effects.

Eric: And you also mentioned, in the paper, some examples in medicine too. We actually had, God, how long ago was that? We had updates in nephrology, Alex? We talked about the EGFR?

Alex: Yeah. It was about six months ago or so.

Eric: Six months ago. Can you give us some examples, even the ones you mentioned in the paper, about how some of these structural races, like these common things that may occur in the hospital or in the clinics that we use, and we may not even think about?

Ramona: Glomerular Filtration Raterate. I probably should have said GFR.

Eric: Yes. I just choose GFR.

Ramona: Is a perfect example of that. So GFR was adjusted based on race, which it probably did lead to African-American patients being diagnosed with chronic kidney disease later in their disease trajectory, as compared to others. Another example is pulse oximetry, so pulse oximetry is not necessarily accurate, and it’s based on skin tone. That can also have some effect. I think that there have been several papers published, particularly during the COVID era, about outcomes relative to pulse oximetry measurement and how inaccurate it can be in patients who have darker skin tones, so those are just a few examples.

Sharon: But also the thing with the GFR was that there was an assumption that Black people had bigger muscle mass, and so the basic premise has always been to dehumanize people by race, and it was beneficial to say Black people had bigger muscle mass, because then that meant they were stronger, and it could justify the need for them to be enslaved and do all that work, because they were stronger. Then, there were studies that said Black people didn’t experience pain, because their skin was thicker.

So you have big, strong people who don’t experience pain, and you can work them and enslave them, right? Then, of course, that falls into medical rules. When you look at the GFR study, they looked at a group of people who had kidney disease and who are sick, and then they extrapolated it to every Black person, so the other thing that happens is that you lose the identity of the individual person and just lump everyone together by race. The same thing happens in geriatrics. We lump everybody who’s 65 and older together, and then we don’t look at the individual characteristics of that person, so we fall into these patterns based on racial premises.

Eric: Yeah, and it sounds like, I’m starting to also think about, before we talk about the intersectionality part, brought up this issue about ageism too, like we see this in geriatrics too. Tim, how should I think about ageism?

Tim: Yeah. I think some of the same themes actually play out, so really strictly speaking, just discrimination against a person based on age, and one of the things that’s very unique about this particular ism, everyone’s susceptible to this regardless of your background, but to build on Sharon’s point, heterogeneity. So I want to share a little anecdote. I was in clinic the other day working with a trainee, and we saw a few patients together, and they happened to be very healthy, community dwelling, older adults, quite active.

One of them was actually still working as a professor in his eighties, full-time. The trainee said to me something like, “But I haven’t seen any geriatric patients yet.”

I said, “No, these are older adults, right? There’s heterogeneity.”

It wasn’t until later in the day, we saw one of the patients, he was expecting to see, who had frailty, functional decline, and so forth. So I think you can see how there’s a lot of work to do among multiple sectors within healthcare, including education and training. Eric, I kind of like to call ageism the invisible ism, because even in very well-intentioned DEI efforts, ageism sometimes doesn’t even get any airtime. It’s not even mentioned. So if we’re not even calling it out, it’s no surprise that older adults are marginalized, and healthcare systems are just sort of this microcosm of society. I mean, you walk into a grocery store, and if you want to look for ageism, just get a birthday card, right? You see the stereotypes, inevitably an older person with a walker, and sort of struggling. I think it probably plays into what happens in our interactions in healthcare all the time, unfortunately, with ageism.

Eric: Yeah. I love what Sharon brought up too, is that we see that even thinking about interventions. Age cutoffs, not thinking about heterogeneity. I wonder, specifically about this paper, its title is Structural Racism and Ageism. Is it structural racism and structural ageism? What’s the structural part? How should I think about that, especially when it comes to the ageism part?

Sharon: That just means it’s ingrained, and it’s such a normal part of what we do. People don’t even think about it anymore.

Eric: So it applies to both?

Sharon: Right. It’s just the foundation of the way we all think and act. We were all trained in a system that taught us these messages.

Eric: It’s funny, because when you mentioned the GFI, that’s exactly the words that they taught me, and not too long ago. I started med school in ’98 at UCSF.

Sharon: Yeah. It’s never questioned, because it’s been normal, and that’s because who made the rules? Who set up the curriculum? Who decided what was healthy and what was normal? And the interesting thing is, with the advent of all these 23andMe, where everybody can do genetic testing, everybody’s a little bit Black. There have been people all through the south who are just been petrified now, because it turns out they’re Black. So we’re talking about a few little genes that change the way your melanin expresses itself. We’re talking about a social construct, not a biological one, but medicine had to justify biological differences.

Eric: Well, that’s the funny thing about isms, right? Ageism, we’re all going to get old. This is all going to affect us it, but the rationality of that doesn’t really matter. People still have these isms, and it’s baked into society.

Sharon: That’s the structural part. It’s baked in.

Alex: It’s a default, right?

Sharon: Everyone thinks it’s normal. Right, and then when you question it, people are like, “Well, what’s wrong with you? This is what it’s always been.”

Eric: And then, Ramona, how should we think about intersectionality?

Ramona: So intersectionality was a concept that was first talked about by Kimberlé Crenshaw, who is a law professor scholar, and she writes within the civil rights movement or civil rights space. She initially described it, when she was talking about the way Black women were portrayed within the larger feminist movement, they were kind of displaced, and they were displaced because of their race. So for the purposes of our paper, we looked at how ageism and racism can intersect to create a bigger problem. We have ageism that creates its own disparities based on age. We have racism that creates disparities based on race.

What if the two come together? As you would imagine, they can be potentiated. Again, there are study after study that kind of bears that out. A perfect example is the COVID-19 pandemic. Those that were at greater risk of having complications from COVID or even dying from it, in the early stages at least, were those who were older and those who were of certain racial or ethnic minority groups. If you have an older person who’s also a member of one of those racial or ethnic minority groups, their likelihood of having complications from COVID, experiencing morbidity and mortality from COVID, was potentiated because their age intersected with their race. That’s kind of where the concept of intersectionality between racism and ageism came to be.

Eric: And Sharon, we see this in research too, from a geriatrics perspective as well. I’m just thinking back to the Aducanumab fiasco, where six individuals in the study group for a merge were Black. What are your thoughts on that?

Sharon: Actually, I was in a meeting in Barcelona when the initial data was discussed, and that’s what totally floored me. We had an international meeting, and I think there was only nine Black people in it. Their Asian arm came from Japan, primarily, a handful of Latino, maybe one or none Pacific Islanders or Native Americans.

And we’re looking at a disease, like Alzheimer’s, that expresses itself twice as much in African Americans and one-and-a-half times as much as Latinos, but here we have a drug that didn’t even include them in the study, and so I worked with a colleague. We wrote a grant to try to look at a way of improving diversity in clinical trials, and the grant just ended. I’m working now on making it part of our infrastructure, so it’s part of what we do. Everybody should be thinking about this, not as a satellite, but to help us understand the actual patients we take care of.

Eric: And that example, for me, really highlights this intersectionality between geriatrics and ageism, because…

Alex: Between ageism and-

Eric: Yeah, ageism. Sorry. What did I say?

Alex: Between geriatrics and ageism. [laughter]

Eric: Yeah, sorry.

Alex: I think that’s not what you meant.

Eric: I’m on hospice and palliative care right now on service. My brain just is not working. The reasons why the numbers were so low, and I’d love your thoughts about this, Sharon, is in part, the study was done in all of these memory and aging centers across the US and elsewhere. Who goes to these memory and aging centers? People with high socioeconomic status and generally white folks. Part of this, baked into how we conduct research, is the structural racism component. Is that right?

Sharon: And nobody sees it as abnormal, because they are studying the people they care about, and that’s the thing. When you conduct a study and you are happy with the results, because it primarily looks at younger, white males… I mean, the Aducanumab study didn’t even have enough older people in it, and I would like to hear from my ethics colleagues what they think is the ethical issues when we are creating drugs that do not include real life people that we take care of, or really just cater to white males, people who have access to academic medical centers, people who can understand a complex consent form, or people who think research may actually help them, and may not be a way to experiment on them and treat them like a Guinea pig. We have to figure out how we reach out to people who have been excluded and, from an ethical standpoint, how can we create a whole plethora of drugs in our country or devices, like Oximeters, that totally exclude significant groups of people? What is the ethics of that, Tim?

Tim: Well, I think from a practical standpoint, at minimum, it makes it much harder to care for the patient in front of you, because how do you apply a guideline to your patient and you apply it inappropriately? So these harms sort of perpetuate because people are excluded from trials, and then you need to apply a trial that wasn’t designed for your patient to your patient. It, at best, makes things extremely confusing, and I think it almost inevitably leads to harm. So from a benefit harm standpoint, it’s simply harmful, and I don’t know if that’s the right ethical principle, but certainly we’re not following the non-maleficence principle, and we are not applying beneficence. We’re not doing the best for our patient in front of us.

Eric: Well, I also think it’s interesting.

Ramona: And it also goes to justice, but it’s not just Aducanumab. I mean, this is a tale as old as time. I mean, if you look at Framingham, was Framingham externally valid? No. I could comb through study after study, and go straight to table one, which looks at baseline characteristics of study populations. They’re not diverse. In fact, we just did that with some palliative care research. Then, the naming of patients. Race is often confused with ethnicity. Ethnicity is often confused with race. So again, it’s a tale as old as time.

Alex: This is an important topic. Really important. The whole thing is important, but I think it’s really important for our listeners to think. The argument, I think, and I don’t hold this argument, but I can think of counter-arguments, but I’ll leave it for you to think of counter-arguments, goes something like this. As Sharon just said, we’re talking about a few genes that determine melanin content in somebody’s skin, right? There is no biologic basis for differences in how the drug works across racial and ethnic groups, right? And therefore, why is it critical that we study this in racial and in a diverse population that represents the diversity of older adults with, say, Alzheimer’s disease in the United States? That is the question, I think, and I have thoughts on how I would address that, but interested in your thoughts on how you would address that argument.

Sharon: Well, there are social determinants of health that could impact somebody’s response to a treatment, and there are biometrics that can change if you’re talking about a device where skin tone may be important, and then there could be changes based on your gender. We know that women metabolize drugs, alcohol, and other things differently than men, and so that could be true for a lot of medications and devices too. Why wouldn’t we just have a natural curiosity to make sure that we, in science, who are supposed to be curious and ask questions, why wouldn’t we want to make sure that what we’re doing is the best for our patient? I find that some people just want a performative approach. I’m sure Ramona’s had this problem, but people come to me and say, “Sharon, can you help me get into a Black church, because I need to recruit at least 10 Black people for my study.”

So they don’t even really want to ask a question that might even be important to Black people. They just want to meet their recruitment goals so they look good on paper, and what I have found with my project is sometimes researchers aren’t even coming up with the right question, because they do not even know the people that they’re trying to study. If you get input from people, you might actually refine your study and come out with a better study. We have researchers who all look like each other, train like each other, and think like each other, coming up with these great questions in their lab, and then they go out and try to recruit somebody to test their hypothesis when they don’t even know any other perspective. So you end up with a very narrow perspective, and what we all want to do, as physicians and scientists, is have a broad perspective about what we’re doing.

Ramona: And that goes to another point that I want to raise. We always talk about recruiting patients that are members of underrepresented groups. I think that we need to think about the longer-term goal, which for me, and I’m sure for many others, is to create researchers that are from these groups that can be involved in research, that can have a seat at the table, so that they can ask those interesting questions that are applicable to patients who are of diverse races and ethnicities. So I think it needs to go beyond just trying to recruit patients, because that’s how you also kind of engender distrust. You go into this community, perform this study, you leave. You publish the paper. You get the next grant that focuses on something else. So you’ve gone into this community and you’ve taken advantage of them, basically, and I think that those sorts of things need to be thought about.

Nancy: And I would just add to that in my recovering caregiver role, that I think there’s a responsibility to be able to answer for patients and caregivers the question of, “How does this drug do for somebody like me?” I can remember having a conversation at hospital discharge about prescribing for my mother blood thinners, and the fellow was very intent on prescribing the latest and greatest blood thinner. Finally, I said, “Can you tell me how this is going to work in somebody like my mother? Because you and I both know that she was not included. No one her was included in the trials of this drug.”

The fellow actually left the room, with the nurse laughing in the corner, and came back later and said, “We’re just going to put your mother on a low dose Coumadin.”

And I was like, “Thank you.”

Because I come armed with geriatricians to advise me, but that’s actually, I knew what her community cardiologist had written in the chart, and yet I was being told that she should go on this drug that had high risk of brain bleeds. And so I think, morally and ethically, we really do have a responsibility to be inclusive in research. I can’t cite the reasons why the frame works [inaudible 00:31:21], as Tim can do, but I just think that both practitioners in the field, and patients and their family, should have an answer to that question when a drug is being prescribed or a device is being suggested.

Tim: And by the way, when Sharon, you mentioned social determinants, I’m thinking back to the work we did on the resource allocation papers, because we sort of outlined that people with accumulated disadvantage often come to medical care later, so their stroke or whatever it is, they’re more likely to have had their first cardiac event or stroke if they’re excluded, essentially, from access to healthcare. So it’s no surprise, to me, that the outcomes will be different. Those folks come in with yet another disadvantage compared to someone who had access.

Sharon: So that’s a very good point, because the clinical trials that we run upstate are mostly for people who have mild cognitive impairment or mild Alzheimer’s disease. When I go out and do outreach, I find people who are already moderate. They didn’t get to a doctor, or their doctor didn’t pay attention to them, and told them, “Oh. Don’t worry about it,” or they never had good treatment for their hypertension for so many years or their diabetes, so they were much, much more advanced at a younger age. We have to look at those social determinants of health and how they impact somebody, the care they give, and the research questions we ask.

Alex: I know Eric wants to say something, but I just want to just put one final point on this. I just want to make sure our listeners are not thinking that it’s really important that we study these drugs, say the MABs, the anti-amyloid drugs in Alzheimer’s disease, in a diverse populations because there are biological differences. That argument holds better for, say, gender or for, as Sharon pointed out, drugs that are absorbed by the skin.

In this case, I think dementia is a heterogeneous construct, right? Alzheimer’s is likely a heterogeneous concept. That’s something we’ve learned from these Alzheimer’s trials, that if you remove a ton of amyloid, it doesn’t help all that much in the bigger picture. There are many, many causes of dementia. Some of those causes may be pathophysiologic reasons, may be more prevalent in populations who have been exposed to different sorts of risks over their lifetime due to structural inequalities right? Due to racism, structural racism.

And, as Sharon mentioned, the ways in which these people communicate with their physicians, the ways in which they may have access to resources, to get biweekly infusions, get MRIs to monitor for this, that, and the other, those may differ as well. So there are a whole host of reasons why it’s incredibly important, but it is not because of biological differences that are inherited at birth.

Sharon: Well, if you look at, again, [inaudible 00:34:48], for example, which was shown not to have any benefit, and it was done in a trial that didn’t have very much diversity, what if that drug turned out to be a huge impact in African Americans? We will never know now because that drug is not going to move forward, and I’m not even sure if we understand amyloid deposition in anyone other than primarily white men. Is there going to be differences in amyloid in older people versus younger-old, versus women, versus men? Who knows?

Eric: And it’s even more complicated, right? Because we know-

Sharon: Maybe diabetes and hypertension, which is so prominent in African Americans can impact your amyloid deposition. Who knows? We just haven’t looked at it.

Eric: And it’s even more complicated than that, because we know that, while these very broad categorizations, very socially constructive, we also know that certain populations, like Ashkenazi Jews, there are certain diseases that run in that population and different populations from across the US, especially ones that have kind of cohorted together more closely, the genetics are often slightly different. Again, not just melanoma, but something else. So when we think about diversity in clinical trials, how much do we have to think, do we include all different populations from all different sizes, and make these huge trials? I’d just love your thoughts on that, Sharon.

Sharon: I think we should do our best to get as many people in from various groups as we can. I don’t think anyone would ever be satisfied with a trial that was just all African American, would they?

Eric: Yeah.

Sharon: So why wouldn’t we try to just get as many people? I don’t think we need a quota. I think it would be reasonable, if you’re talking about a disease that is represented in a certain percentage of people, maybe that’s a starting point. Maybe you should make sure you at least enroll some of those people. We label diseases so much by race. You look at sickle cell, which is labeled as an African-American disease, but it really affects people across the Mediterranean, into Greece, India, and other places, so we have to have a focus on taking care of the human, taking care of people.

Ramona: May I say something?

Eric: Yeah.

Ramona: And I don’t want this to get lost, because a lot of times when we talk about disparities, we talk about socioeconomic status. That’s a fair point, to a certain degree, but disparities don’t exist solely because people are poor. They exist because people are experiencing implicit bias. They exist because they don’t trust, and where does that trust that mistrust come from? Now, people will say that it comes from Tuskegee or it comes from Henrietta Lacks, or it could just come from the experiences that they have had with healthcare providers. So I just have to mention that a lot of people, they want to say that the focus of disparities is because of socioeconomic status, and that is one factor for some people-

Eric: Good point.

Ramona: But as a physicians, someone who has gone to medical school, my family members and I have experienced those things, so please don’t just limit it to socio-economic status.

Eric: I’ve got a question for you, Ramona. So talking about intersectionality, and I’m going to go back to, it often seems, and this is something Sharon was talking about too, the people who are running these studies, the people who own these drugs, they often don’t seem to care as much about fixing the problems, but if it’s in their interest to say, “If CMS doesn’t pay for this drug, we’re going to worsen disparities,” they’re going to call out the racism, the structural racism, that is now inherent in that CMS decision. What are your thoughts on that? Because it feels kind of like, “You didn’t pay attention to it before, but now all of a sudden you’re worried about disparities?”

Ramona: And that’s, again, why I think that we need to have people at the table that represent the diversity of the population that we serve. I’m kind of at the point that, however it comes, it comes. A lot of societies didn’t get to diversity, equity, and inclusion until George Floyd happened, but it’s happening, so that’s a very tough question.

Eric: What do you think needs to happen next? Let’s go into actions. Where do you go from here with this framework?

Nancy: I’ll start, and I’ll try. I see Alex has his guitar out, and he is ready to play us off the stage. So I think for the American Geriatric Society, we’ll continue the work that we’re doing internally to clean up and look at our own house. So looking at the way we deal with DEI across our portfolio products, we have a 10-year initiative to improve or be sure that we’ve got the best diversity in research presented, our AGS annual meeting, as possible. I think the definition in our research committee or the goal of our research committee, as identified for presenters, is a study population should reflect the diversity of the population being studied, so that kind of answered that earlier question, Eric, that you had.

Alex has tons of stuff that he could talk about, along with Ramona, in terms of what the Journal of the American Geriatric Society is trying to do in increasing both diversity in the editors of the journal, but then also paying attention to the diversity in the research that’s published. I’m going to be really clear though. Those kinds of efforts are really long term. You can’t all of a sudden say to somebody who’s been doing their research for five years, “Hey, we’re not going to publish you,” because you can’t change your rules like this overnight. You kind of have to reflect the pace of the research that’s underway.

I would say the other thing that we’ll continue to do is to raise issues around DEI and equity in our external facing work as well. I think Eric, you know that current definitions of professionalism are a pet peeve of mine, particularly in medicine because they really provide their code for not allowing for behavior or not recognizing that not everyone’s the same, and we’re all allowed to have our own personal identity in our workplace. That’s a whole other podcast, so I’m not going to have you do that now.

Eric: I know we got a couple more minutes left. I’d like to hear from the others. I’m going to start with Sharon. Sharon, from your perspective on the board doing research on this, where do you think we should go from here?

Sharon: Well, it is like moving a big ocean liner. I think that we have to look at the way research is conducted and look at the way questions get developed, and I think we have to have a different way of reaching out and developing relationships with the communities we serve. I don’t think it’ll be appropriate for researchers to just continue to sit in their homogenous environment, and come up with questions that may only be curious to them or may not really help us improve our care to our older adults or to our Black patients, et cetera. So I think, just like any big institution, you have to start and you have to have a long-term focus, and you can’t get tired.

Eric: It also sounds, diversifying our workforce is incredibly important too.

Sharon: Very, very important. Yes.

Alex: And Sharon gave a terrific plenary about this at the AGS meeting last year, and also wrote a paper in JAGS about this topic, that we’ll link to in the show notes associated with this podcast.

Eric: How about from your perspective, Ramona?

Ramona: You stole my answer. Diversify the workforce.

Eric: What does that look like to you?

Ramona: So it looks like, starting with medical schools. There’s data that shows that the number of African American men who are currently in medical school hasn’t changed from the 1970s, so certainly diversifying medical schools, diversifying graduate schools, trying to get more learners, trainees in the pipeline, not necessarily to become geriatricians. We are unicorns amongst unicorns. I recognize that, but to have a bent towards the care of older adults, and a bent towards the care of older adults from diverse racial and ethnic backgrounds.

Eric: And Tim, from your perspective?

Tim: Yeah, ad just to bring it back to ageism as well, I think there’s things that can be done immediately. There’s just sort of the word and language choices that we use, sort of reframing aging, avoiding the little, old lady and the progress known, and avoiding “sweetie” and “honey,” and addressing older adults with appropriately respectful terms, like Mr. And Mrs. Smith, until they tell you how they want to be addressed. So I think that’s extremely important in terms of action, and I also think workforce is immensely important. We’ve just got to have a critical mass of people who understand these issues in order to move forward

Eric: And stop excluding older adults from clinical trials. I know that’s Ken Covinsky’s pet peeve right there. I could talk for another three hours on this subject. I learned a ton. I just want to thank everybody. Before we end, Alex, do you want to sing us a little bit more of that song?

Alex: (singing) “It’s been too hard living, but I’m afraid to die, ’cause I don’t know what’s up there beyond the sky. It’s been a long, a long time coming, but I know a change gon’ come. Oh, yes it will.”

Eric: Tim, Sharon, Ramona, and Nancy, thank you for joining us on this GeriPal Podcast.

Ramona: Thanks for having us. This has been great.

Tim: Thank you.

Nancy: Our pleasure.

Sharon: Thank you.

Eric: And thank you to all of our GeriPal listeners and Archstone Foundation for your continued support.

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