Episode Transcription
Introduction: Welcome to the 113th episode of the Health Disparities Podcast, now in our third year of production and thank you for being part of our growing audience as we start a new year of 2022 with a series of episodes recorded very recently at our annual Movement Is Life caucus. Featuring many important thought leaders, the annual caucus was convenient in person in November, in Washington, DC and was a great success despite the usual COVID related obstacles. So, over the coming weeks, we’ll be featuring some of the excellence speakers and workshop leaders who joined us, including orthopedic surgeon and Yale school of medicine past professor Dr. Mary O’Connor from Google, Dr. Garth Graham from Harvard, Dr. Leonard Fernandez, the singing Dr. Elvis Francois, Baton Rouge mayor, Sharon Weston Broome, and leaders from some of our operation change pro programs across the country among many others. And these lively conversations are rich with insights and reflect the mission of the Movement Is Life community that is focused on addressing health disparities through a better understanding of the social determinants of health, and elevating awareness of the benefits of physical activity in preventing and managing common chronic conditions, particularly in a community setting. So, today we’ve reunited a stellar panel from our caucus who discussed the subject of shaping American law to reduce health disparities and protect human dignity. Including Frank McLellan, law professor emeritus from Temple University, and author of the book, “Healthcare and Human Dignity”, Deone Powell from HIV and primary care organization, Philadelphia FIGHT, Cara McClellan from the NAACP legal defense and education fund and keynote speaker, Daniel Dawes from Morehouse College, who talked about racial inequities, tracking the fruit of America’s poisonous tree and his book, “The Political Determinants of Health,” at the caucus. This discussion is led by Frank McLellan, and it explores the intersections of health law, health policy, and public health. All views expressed are the participant’s own.
Frank McLellan: Good afternoon. My name is Frank McLellan and I’m a member of the steering committee of Movement Is Life and I’m pleased today to have three wonderful guests who have different perspectives and experiences. They all happen to be lawyers working in different areas related to both health law and civil rights. Let’s start by giving you an opportunity to talk about your background that we should highlight for the audience and I’ll follow up on that as we go along. So, I’m going to start with Mr. Daniel Dawes we have as our guest Cara McClellan and Deone Powell. So, let’s start with Mr. Dawes who’s just given a keynote speech to Movement Is Life regarding the strategies that he has thought about with respect to addressing some of the problems of health disparities.
Daniel Dawes: Sure. Well, it’s certainly great to be with you all today and thank you Professor McClellan. I’m Daniel Dawes and I have the great honor of leading the Satcher Health Leadership Institute at Morehouse School of Medicine. I serve as an associate professor in the Department of Community Health and Preventive Medicine and our work really centers on addressing the underrated issues in health policy, those issues that were long deemed taboo or stigmatized from mental health to oral health, you name it. But today we’re also looking at creating systemic change at the intersection of equity and policy, and that’s really been our focus in order to transform our systems quite frankly.
Frank: And you’ve been quite busy as an author. Before I move on to the other guests, could you tell the audience about your current books that have been published and what you’re working on now?
Daniel: Sure. Thank you. So, the first book really takes a look at the past, “150 Years of Obamacare,” looking at this movement to advance health equity in America via public policy. And then, the second book now looks at the evidence from those periods, what had been tried and tested to get these policies over the finish line, to get them implemented and those that really are favorable to health equity to get them enforced and that one is the political determinants of health. So, it’s looking at digging a little bit deeper than we have in these social determinants of health movement to figure out what really is at the root cause of these health inequities we’ve been seeing and experiencing in our country and around the world.
Frank: Thank you. Let’s move on to Cara McClellan an attorney practicing with the legal defense fund. Cara, why don’t you give us a brief description of your background as well as the role of the legal defense fund in representing clients?
Cara McClellan: Hi, everyone. I’m very happy to be here today. My name is Cara McClellan. I’m an attorney at the NAACP legal defense fund, which was founded in 1940 by Thurgood Marshall. We are a racial justice nonprofit law firm. We work on civil rights litigation in the area of voting rights, criminal justice, economic justice, and education as well as doing policy work and organizing. Our work has been impacted by the pandemic in many ways, as I’m sure we’re going to talk about. We know that black people are more likely to be exposed to COVID due to systemic disparities in particular, in terms of who are essential workers, that black people are more likely to die from COVID due to underlying conditions and inequity in terms of access to the healthcare system. And what we work on is the infrastructure issues around supporting black and brown communities to help push back against those inequities.
Frank: Deone, would you just give the audience a brief description of your background?
Deone Powell: Sure Frank. Thank you all for having me this afternoon. My name is Deone Powell, I’m general counsel and chief legal officer at Philadelphia FIGHT. FIGHT is an acronym for Field Initiated Group for HIV Trials. We are historically rooted into FIGHT against HIV and aids. Over the past years, we have expanded services under the auspices of the Public Health Services Act, Section 330, which gives us the opportunity to provide healthcare to folks regardless of their HIV status and most importantly, regardless of their ability to pay for it. We have seven different health centers in Philadelphia, pediatrics, behavioral health, a dental practice, primary care and the Jonathan Lax Center, which is infectious disease.
Frank: So, I think that what we all have in common and certainly the three of you in your work is trying to identify and provide evidence of health disparities and trying to come up with strategies to address those. So, let me start with Daniel and ask you what strategy are you currently employing to try and move us ahead at finding solutions to the problems that we have with health disparities on a racial and economic basis?
Daniel: Yeah, I think our strategy really focuses on immediate things that we can do as well as longer term initiatives and in the immediate term, what we’ve been focusing on is data, data collection and reporting, standardizing data. Right now, what we’ve recognized during this COVID pandemic is that we have this fragmented, disjointed public health data infrastructure, which has made it really difficult to track COVID’s impact especially on vulnerable and marginalized, minoritized communities. And so, for us, part of the strategy has been to create a new public health data infrastructure to help educate policy makers at all levels, at the local public health departments, state public health departments and then of course the federal. And how we can really pull these disparate data systems together because right now it feels like we are flying a plane with 50 different instrument panels, really, more if you include the us territories, right, and they don’t collect data the same way. They haven’t standardized their data collection practice. Sometimes, they don’t even want to show what the data is revealing on their end, right. Which is problematic. So, there are a lot of gaps in data that make it really hard to do the work that we are doing to advance health equity. So, that is an immediate project for us in terms of the data so that we can use that to tell the narrative. And then, longer term, what we want to do is to focus on the existing policies at all levels, again, doing an analysis of those policies to understand which ones have continued to drive the inequitable results we see. And then moving forward, we are working with policymakers, again at all levels to figure out how they can take an equity lens in the creation of new policies. So, those are our strategies moving forward.
Frank: So can you give us an example of one issue that you are exploring with, for the data that you think will be helpful in moving us ahead to address problems?
Daniel: Absolutely. So, right now, I’ll bring up COVID for instance, right. We know that COVID isn’t going away anytime soon. We in fact have folks who are long haulers and will continue to experience all sorts of issues moving forward. But, for us, when we think about COVID, what we recognized early on was that there was great difficulty in trying to get public policymakers or even public health leaders to reveal the data. What the data was showing was frightening to them. I think you all talked earlier in your session and Deone, you may have talked about this, I think you raised this a lot of folks looked at HIV/AIDS initially because of the data as a white man’s disease, right? Quite the opposite was happening early on in this pandemic where the data was showing it was impacting communities of color disproportionately, and African Americans in particular were having the highest death rates. So, we knew based on precedent, on history that it was going to have a disproportionate impact. That we are seeing communities standing on an inequitable foundation and so of course it was going wreak havoc on these communities, but how so? Well, no one wanted to disclose that data that was showing, especially disaggregated data by race and ethnicity. And we thought that was very problematic, what could we do to get them to disclose this information? So, we created a coalition called ‘We Must Count’ in conjunction with AARP, UnidosUS, which is one of the largest and oldest Hispanic or Latino civil rights organizations, the NAACP of course. So, I was glad that we have Care On, and other groups really that have been anchor institutions in this fight for civil rights and equity. So, together, we leveraged the power of collaboration to move these jurisdictions, these policy makers to start disclosing. And we saw success early on in South Carolina with one state legislator, an African American gentleman who fought to get us the data. Then we got to Virginia with Richmond, Virginia disclosing the data, the same thing with Milwaukee, Wisconsin. So, at first we had to focus on cities and counties to get that data and then we moved up to get the states, right? And then of course, Michigan became one of the first states to do that along with Illinois and so forth. So, when we got that data, it was even more striking than we thought.
What we saw was that a 100% of folks who had died from COVID early on were African Americans. In other areas and tribal nations, of course there were native American groups that were dying disproportionately. And we thought, oh my gosh, this is really alarming, but some states still didn’t want to reveal that data because they were fearful, then that perhaps whites or other groups may not take this pandemic seriously. So, we had to deal with those issues and really push the idea of transparency and data early on and that’s been a focus of ours since that time.
Frank: Thanks. So Cara, the legal defense fund, of course, is concerned with the underlying impact on human beings and citizens of that data. Can you tell our audience what perceptions or what observations you have in terms of the impact of COVID on individuals that you have represented or legal defense fund has encountered as a result of the COVID pandemic?
Cara: One of the things that we started thinking about and talking about early on was what is going to be the long-term impact on black communities of this pandemic? We know that black children are the most likely to have lost a loved one or a caregiver during this time. So, what does it mean to return back to school under those circumstances, in particular if you are in a school district that is under resourced, that is over reliant on suspensions and expulsions for dealing with social, emotional issues instead of providing services and programming, and what does it mean if you are in a school that in addition to being racially segregated and under resourced has also been underperforming academically. How is this going to exacerbate the achievement gap? And so, we started early on in our advocacy reaching out to school districts to prepare for what it means to reopen after this pandemic. To address the fact that schools don’t provide social and emotional supports, too often. The reality was that schools have to respond to the fact that students have had their educational experience and the social services that schools provide completely disrupted for a year and a half. It’s unprecedented right. And so, we started that advocacy early, we started the advocacy in terms of addressing learning loss and social services early. We advocate it for meal distribution and of course this is wider than the impact on kids when we look at who has been most likely to have to continue working or to be out of work during this time. And when I say continue working, I mean, in person, as essential workers and so both at the very local level but also at the federal level, in terms of what does it mean to disperse Cares Act funding and other funding in an equitable way, given the reality of who has been most severely impacted by the pandemic in a long-term way. Data is essential for that. Having accurate disaggregated local, state and federal data is essential to that advocacy
Frank: And Deone, you are general counsel to an organization that provides healthcare services to a broad range of people in the Philadelphia area. I’d like for you to tell our audience how the COVID epidemic has impacted upon your organization’s ability to provide care to its patients and what strategy you’ve taken.
Deone: Well, like most healthcare organizations, one of the first things that we did was to pivot to telehealth. And one of the things that we learned in so doing is that telehealth is very beneficial to our patient population. And it’s also encouraged lawmakers and legislators to take another look at telehealth and to provide adequate resources to organizations like ours to keep those programs in play. And most of us understand telehealth as being the process by which you can receive healthcare without necessarily being in the doctor’s office. Obviously, COVID prevented that type of foot traffic, at that time, and one of the interesting statistics that we saw very early on is that our HIV patients, especially benefited from telehealth. The number of HIV patients that we saw in the year prior was less than what we saw after given the fact that they now had access to telehealth.
I think that that reveals some misunderstandings and opportunity to unlearn some things that we thought. One of which is that our population of folks weren’t savvy enough with technology or that they didn’t have access to the technology that would enable them to take it full advantage of telehealth. So, telehealth has proven to be instrumental to us, continuing to adhere to our mission and, most importantly, our ability to provide the services to our patients. That is on the healthcare side but Philadelphia FIGHT is an organization that is matrixed, and part of our organization is also to provide educational services and outreach and wrap around services to the folks who need it the most. And in that vein, we’ve all also been able to move towards a more telehealth or more of a system that would leverage technology. One of our signature programs is project TEACH. Philadelphia FIGHT is filled with acronyms and (TEACH) stands for treatment, education, activists, combating HIV. That is a program that empowers, individuals who are living with HIV to take control over their own lives and their own healthcare.
There was also a misconception that folks who were HIV positive, especially in the early days of the epidemic, that they didn’t have this thirst or quest for knowledge, that they would be comfortable with providers and folks who thought they know to be able to say to them, this is what you should do, and these are the steps that you should take to take control over your own healthcare. And in that vein, our TEACH classes, most of them, have gone virtual. We’ve now expanded the TEACH paradigm, this paradigm where you educate patients to be able to take control over their own health outcomes, to include Project TEACH Frontline, which is where we encourage our folks who’ve graduated from the TEACH program to take the program out into their communities. There’s also TEACH Outside, which is where we actually go into the prison in system and educate folks about HIV and aids. There’s Latino TEACH, there’s Faithful TEACH, which I’m always excited to talk about because that is a program that empowers faith leaders to learn more about HIV and aids, and to take that information to their congregations. That’s something that’s been very critical and very crucial to the mission of Philadelphia FIGHT. And a good example of that is the fact that our board president is a Bishop, Bishop Ernest McNair, who very early on in the epidemic was instrumental in highlighting those issues in his congregation, destigmatizing, HIV, and aids and most importantly, creating a space for folks who are HIV positive in his church, because one of the underlying themes of Philadelphia FIGHT is that you have to treat the whole person. Folks during the beginning of the HIV crisis were broken and not just from a healthcare standpoint, but faith based. They weren’t allowed to go to their churches, families weren’t claiming their bodies once they passed away from HIV and aids. There is a very disheartening program that we are really trying to advocate for right now, and that is giving proper burials to people who died from HIV in the 1980s, whose remains and whose cremated remains have resided in the basement of a funeral home in Philadelphia because the bodies hadn’t yet been claimed by their families due in large part to the stigma associated with folks who passed away during that time. So, I don’t want to get too far ahead of myself in terms of the plans to do that, but rest assured there’s a concerted effort to giving those folks, the dignity, the respect and, most importantly, the sense of community and compassion that they deserve by virtue of being impacted by the epidemic very early on. So, in summation, there are several programs that we have at Philadelphia FIGHT, all of which in one way or another have been impacted by COVID. But we have never, ever stepped away from the mission and we’ve done what most other organizations have done and that is to pivoted in ways that we can continue to provide those resources to our patients, clients, and consumers.
Frank: Well, the problems are so complex and so important, we could go on forever talking about this, but I want to try to bring this toward a conclusion by asking you given what you have learned so far, Daniel you made the point during your presentation that we know we can’t go back to normal. What’s our roadmap at this point from your perspective, because you’re really focused on policy making, and once you get this data then, hopefully we’ll be able to do something constructive to address disparity and promote health equity, do you have any sense of next steps?
Daniel: Yeah, here are my next steps. So, what I’ve always argued for is that we’ve got to continue to have conversations like this right around race and place and class, and not avoid these very challenging topics. I think it’s going to be critical. We have to understand when the social and the political determinants are at play because it does matter. And then, for us, we’ve long been engaged at Morehouse School of Medicine and Community Engagement. We’ve written a book literally on that model and believe that the people who are closest to the problems and the pain in our society should be the ones who are leading the solutions. And so, we really need to scale that up I think, and other academic institutions with other leaders and readers, researchers getting them to understand why that is important. And then, for us, I do believe that health equity is going to begin and end with the political determinants of health. So, we’ve got to understand these issues because it does matter, right. If we’re not familiar with them, how can we correct or repair the past, as I was talking about in my talk today. So, that would be our roadmap. I’m really excited with what we see going on right now under the Biden/Harris Administration. We now have for the first time in US history, an administration that is committed, really committed to the advancement of health equity, they have centered equity across all of their agencies. They’re taken very seriously, and I think there are so many opportunities for us to really move that needle of health equity to a degree that we’ve never been able to realize before. Now, how far we can move that, I think it’s going to depend on how involved we are.
Frank: That’s very encouraging. Cara, what’s your thought in terms of there’s been so many problems that you’ve identified from the school system to other areas of life? Well, what priorities would you set for, trying to address them and what’s your thought about the roadmap?
Cara: As we’re thinking about infrastructure as a country, equity has to be central in all of that in terms of how we’re thinking about transportation, healthcare, schools, technology. Addressing the inequities that didn’t come out of nowhere, and don’t have to be the status quo, but were purposefully created and structured that way has to be a priority and the federal government has to be central in addressing those inequities as we’re taking on this project of infrastructure. I think addressing the housing instability that has been exacerbated during this pandemic, addressing the childcare crisis that has been exacerbated by this pandemic and ensuring that there’s equitable school financing. To ensure that there’s resources and facilities that can provide for a 21st century education for children is key and really supporting healthy communities in a meaningful way in terms of climate in terms of access to food and, as we’ve been talking about, all the things that structure health and inequities and the political determinants of health, as we’ve been talking about.
Frank: So Deone, you get the last word on this. What’s the roadmap that you would draw, and what priorities would you set?
Deone: We at Philadelphia FIGHT are going to keep on keeping on. We are to stay committed to our mission, to our patients and we’re doing that by actively recruiting doctors and providers that reflect the population that we serve. As in-house counsel, I don’t have the pleasure of interacting on a day-to-day basis with our patients. That is something that is exclusively in the realm of our health centers and of our clinicians there. So, we are going to continue to support the Dr. Annette Gadegbeku, we’re going to support the Dr. Mario Cruz’s. We’re going to support all of those folks who on a day-to-day basis have such an impact on folks’ lives. And we’re doing that by again, making sure that they have the resources that they need, making sure that we, as leadership behind the scenes, understand and recognize the priorities that they set and, most importantly, to support them. That is what we’ve committed to doing from the beginning and that is what we are going to remain steadfast in doing is to advocate on behalf of the populations that we serve. To remain to be the culturally competent healthcare organization that folks know us to be and under the leadership of our CEO, Jane Shaw, and our community board, we’re going to keep on keeping on.
Frank: I want to thank all of you for a great conversation and sharing your ideas. And we know the audience must appreciate how complex the problems are, but certainly you’ve offered some ideas that are worth pursuing. And Movement Is Life, I think has benefited greatly from this caucus and its goals of having a multidisciplinary approach and critical thinking about how to reduce health disparity. So, once again, thank you all.
Daniel: Thank you.
Deone: Thank you for having us.
Host: Thank you for listening to this episode of The Health Disparities Podcast, a program of Movement Is Life. And if you’re finding this podcast of value, you can help us reach a wider audience by letting your friends and colleagues know about our regular exploration of health equity. And maybe also consider leaving us a review on apple, Spotify, Google, or Stitcher, and look out for our next episode. This is series producer, Rolf Taylor, signing off until next time be safe and be well.
(End of recording)
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