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Administrator Brooks-Lasure, welcome.
MS. BROOKS-LASURE: Thank you so much for having me.
MS. JOHNSON: We are so glad that you are here. We’ve got a lot to talk about. So we’re just going to go ahead and jump right in, and I want to start kind of big picture with the agency that you lead and the expansive purview that you have. Can you briefly run us through all the programs that you oversee, who you serve, who benefits from them, and who’s enrolled? So talk to us about what it is that you do a little bit.
MS. BROOKS-LASURE: Certainly. So CMS now is responsible for almost one in two Americans’ health care between, I like to say, the three M’s in CMS: Medicare, Medicaid and CHIP, and Marketplace or Obamacare coverage. We are responsible for over 160 million Americans in terms of their health coverage.
We also have a responsibility that I think the world saw very clearly through covid-19, and that is overseeing the public health and safety of most of the facilities in the country.
MS. JOHNSON: Absolutely. And so, you know, under the Affordable Care Act–you mentioned Obamacare. So under the Affordable Care Act, the Oncology Care Model was developed. Can you talk to us a little bit about what that is, why it was created, and what it hopes to achieve?
MS. BROOKS-LASURE: So I think you just–we all just saw in the segment just how much cancer is an important part of the health care of so many people, how we’re seeing just rising rates, particularly for people of color, and our programs oversee coverage for millions of people. We want to make sure that when someone is diagnosed with cancer that they get the comprehensive coverage that they need, and that was the start of the Oncology Care Model of really making sure, particularly in the Medicare program, that people are getting holistic care. And we just recently launched a revamp of that, of continuing to broaden participation, really trying to focus on making sure that providers that serve the underserved also are able to join this model and really help make sure that Medicare beneficiaries who have cancer get the care that they need.
MS. JOHNSON: You mentioned the pandemic, and so one of the things that we saw during the pandemic happened to be kind of delayed care, people putting off some screening. So I guess I’m wondering if you could talk a little bit about kind of the pandemic effect on cancer care and cancer treatment and cancer screenings.
MS. BROOKS-LASURE: You are so right to raise that during the pandemic, a lot of–we saw a drop in terms of non-urgent services. So people didn’t go to the doctor as much.
We also have, even before covid, had a lower rate of people getting preventive care than we’d like to see. It’s really critical that people get screened for all sorts of types of coverage or conditions but certainly cancer being a key one. And so we continue to try to promote making sure that people are getting preventative care. As you know, the president has relaunched the Moonshot really focusing on not just making sure that people have coverage but really making sure that people are getting screened and that we are treating cancer when people–when they discover they do have it.
MS. JOHNSON: And during the pandemic, so despite this kind of drop in screenings and what we were seeing, there was actually an increase in the number of folks who were able to access insurance, right? The number of uninsured Americans actually dropped and hit record lows. How actually did that happen?
MS. BROOKS-LASURE: Well, I would say for a couple of reasons. One, when the Biden-Harris administration came in, the president made clear how important it was for people to get health care, and so in both the American Rescue Plan and now more recently in the Inflation Reduction Act, there were subsidies put in for the Affordable Care Act or Obamacare coverage which made coverage much more affordable.
We also launched an aggressive outreach effort, and so we’re now at 16 million Americans who are covered through the Affordable Care Act.
And also, Congress had passed what we call “continuous enrollment” and keeping people on Medicaid and CHIP. So we’re also at record levels of Medicaid and CHIP enrollment compared to what we have seen really throughout its inception.
And so we’re at record lows in terms of the uninsured rate, and I think we understand why, right? Like during the pandemic, when we wanted to think about how do we make sure people have access to vaccines, how do we make sure that people have treatment, how do we make sure that people get treated so we don’t spread the disease, I think we all got a lesson in how important it is for people to have health insurance coverage at any point so that we can treat the conditions.
And so now it’s just been a real focus of this administration to make sure that people have health coverage for when they get sick and even before they get sick, so they get their preventive care.
MS. JOHNSON: Now, is this a lesson that–you said so this is a lesson we learned. Is it a lesson that we are continuing to apply, meaning are folks still able to have this kind of continuous coverage? Right? The folks who signed up and were able to get, you know, care and health insurance during the pandemic, do they still have it? Are some of those same initiatives and efforts still in place, or has there been a bit of rolling back of some of these efforts?
MS. BROOKS-LASURE: So it’s going to–I am going to paraphrase the vice president who says like every generation has to continue to fight the fight, and it’s true in health coverage that in our country we require people to continue to elect, whether it’s through your employer coverage where once a year you say, “Yes, I want to re-enroll,” and now in Medicaid, that’s beginning again. So we’re starting what we’re calling the Medicaid renewal process, where states are starting to tell people that they need to go in, find out whether they’re still eligible or whether they need to transition to marketplace or employer- sponsored coverage.
This is millions of people who right now are needing to make decisions and make sure they’re filling out their paperwork, and it is an all-hands-on deck moment. We are working very hard with states to make sure that people know that they need to fill out their–what we’re calling “renewals” or redetermination materials. But really, we want to see everybody, including the private sector, really encouraging people to make sure that they open their mail and find out whether they’re still eligible for coverage or whether they need to transition to other coverage.
MS. JOHNSON: And how many people are you expecting to kind of fall off of their health insurance during this churn that is happening as people are qualified, are expected to requalify and reapply for–I’m thinking specifically about Medicaid insurance in this instance.
MS. BROOKS-LASURE: So every time we’ve gone through a process where people have needed to fill out paperwork, we often see people fall through the cracks. I mean, before, it used to be that 17 million people on an annual basis would be going through this process, and some would end up uninsured. I like to not focus on what might happen. I want to focus on what we can do to make sure it doesn’t happen. And so my goal is to make sure that we’re doing everything that we can as an agency and that we all really focus on trying to make sure people can get enrolled and stay enrolled. But it is–it’s a potential for millions of people to lose coverage if they don’t get connected to either stay on Medicaid or connected to other coverage.
MS. JOHNSON: So what are you–what is your administration doing? Right? Like what are you doing to make sure, and how do you help make sure all these millions of people are able to keep the coverage that that they deserve?
MS. BROOKS-LASURE: We are doing many things. So we are working with states and really looking at the data to make sure they’re following all the rules that have been outlined as well as take up the flexibilities and the strategies that we have provided for them to get people enrolled.
We are increasing our outreach efforts through Healthcare.gov and our work with what we call “navigators,” people who help people to enroll, to make sure that people know.
We continue to call on health plans, pharmacies, providers, trusted messengers who really interact with people who are on Medicaid and CHIP to make sure they know the paperwork that they need to fill out.
And there’s been just a tremendous effort from civil rights organizations, from advocacy organizations to get the word out. But this is a year-long process. It’s just beginning in some states and will continue for the next year. And certainly, we will be holding the state’s feet to the fire to make sure that they’re following all the rules that Congress outlined and that our administration has outlined to make sure that people get access to the care that they need.
MS. JOHNSON: You mentioned something, trusted messengers, right? And we heard a lot about trusted messengers during the pandemic. How do trusted messengers help in this instance? You mentioned navigators. I feel like everybody could benefit from a navigator because insurance is not an easy thing to understand. So talk about the importance of trusted messengers with insurance but then also cancer care, right? Like just kind of when we think about the country’s health care system, why is that so important?
MS. BROOKS-LASURE: It is so critical that when you’re trying to navigate something, particularly when you’re in a vulnerable state, right, when you’re–it’s one thing when everything is going well in your life, but when you have cancer, when you have–you’re having a baby, when you’re having this health crisis, you need somebody who you really feel like understands where you’re coming from, who is trying to help you and cares about you, not just your disease, not just your condition, but cares about the whole person.
We have seen over the past couple of years how important it is sometimes for people to have people who look like them, who have shared experiences, who really understand where someone’s–someone’s background. You know, I heard one conversation with a group of stakeholders, and they talked about how immigrants coming from a country, where they’re not used to the government trying to do something good for them, need a different kind of encouragement to enroll in health coverage, same with–we know there’s a history of providers not always treating communities of color, of that being a safe space. We need to have–that there to be these trusted relationships, and sometimes that’s the government. Sometimes it’s a provider. Sometimes it’s a faith leader. It can look different for different people, and that’s why it’s crucial that we make sure that we’re partnering in the federal government with the people, the trusted messengers for every individual that’s going to–where that kind of connection is going to resonate with that particular person.
MS. JOHNSON: And kind of help ease some of the stress, right? So like the quality of insurance also matters, and so according to a new poll by KFF, nearly six in ten Americans report experiencing at least one problem with their health insurance in the past year. I mean, that’s ranging from claims being denied, difficulty finding in-network providers, and these issues are felt both by private plans and folks on public insurance and government-sponsored insurance. And so as the study points out, even small kind of annoyances can create big headaches, and so I guess I’m wondering, you know, in addition to trusted messengers, what is your agency doing to help kind of address what seems like a really widespread issue here?
MS. BROOKS-LASURE: This is an area of focus for us, and we’ve actually put out proposed rules or guidance that we are in the process of reading all the comments, about some of the red tape that you’ve talked about, prior authorization, the hoops that you need to go through. There are, of course, with everything, going to be rules and requirements that people need to go through, but we are really trying to make sure that we’re hearing the perspectives of the people that are covered by our programs, as well as the doctors, the nurses, the clinicians who provide the care and incorporate that into their work, our work so that we make sure that people can get the care that they need.
MS. JOHNSON: We’ve been talking a lot about insurance, right? But insurance is only good if you can actually use it in access care, that, you know, this insurance covers. So let’s talk a little bit about what are some of the other barriers to care outside of just having insurance or access to insurance. So like what else–what else can kind of impede people’s access to getting the care that they need, particularly when we’re thinking of cancer?
MS. BROOKS-LASURE: Well, of course, as you said, I think of coverage as being necessary, not sufficient, to making sure that people get the care they need. Again, what people need, most importantly, is a trusted provider, right? So their doctor, their nurses, people in their communities and who are able to see them and treat them.
It’s also, again, these–what I like to call the “ancillary” or the health care adjacent services, so making sure that people get–are asked about things like are you–do you have secure and affordable housing, do you have access to the food that you need, some of these things that really can affect your ability to access the care, because it’s not, of course, just about your health care. It’s about who you are as a person. And that’s been an area of focus for the entire administration and certainly here at CMS to encourage opportunities, whether it’s through state Medicaid programs, whether it’s through our models to make sure that people are getting that full range of services.
MS. JOHNSON: And I would be remiss if I didn’t ask this, and I think this will probably be one of the concluding points of our conversation, and I know it is something that you and I have spoken about previously and you care and are passionate about, and that is maternal health and the U.S. maternal health crises, which has, you know, taken a renewed spot–renewed place in the spotlight right now as we think about the death of Olympian Tori Bowie. And so, you know, when we think about the U.S. and the high rates of maternal mortality, particularly amongst Black women, the question that invariably comes up is why? Why does the U.S. have such high rates of maternal mortality compared to our peer nations?
MS. BROOKS-LASURE: It’s such a complex problem and hard to capture in just, you know, a quick minute, but I would say one of the most important issues is because that we don’t have full universal coverage, right? So it’s not just when you actually are pregnant. It’s before you’re pregnant, making sure you’re getting all the preventative services, making sure that the person is seen holistically, not just coming in at the third trimester. So that, of course, is one piece of it.
It’s a long history of, I think, overlooking Black and brown women in this country in our health care system, and we continue to work on making sure that women have the providers that they need and actually are listened to when they go see the provider. So that’s a piece of it.
I mean, this administration is incredibly focused on making sure that women are covered postpartum. We have 35 states that have taken us up on the option to cover women up to 12 months–to cover women for a total of 12 months after they give birth. I’m a parent, and I will say two months after you give birth, the idea of having to navigate your health insurance coverage when you’re in the midst of figuring out how to make sure the trains are running, how to get your child to the pediatrician, that’s not the time that you want to see coverage. That’s part of it.
We continue to encourage hospitals and other providers to make sure that they’re looking holistically at best practices. We know what works. And again, sometimes it’s really around making sure that that person giving birth has around them trusted people, whether that is an OB/GYN, whether that is a midwife, whether that’s a doula, to make sure that people are getting the care that they need.
MS. JOHNSON: And you mentioned postpartum coverage, right, because–and how your administration is really pushing for folks to have 12-months’ postpartum coverage. Talk about that fourth trimester, because I don’t think people realize the number and the extent of maternal morbidity and mortality that happens after birth, right, so during that kind of fourth trimester. Talk about–talk to us a little bit about that.
MS. BROOKS-LASURE: Oh, yes. Many, many of the deaths–and deaths and morbidity, which is another important piece, right? So it’s not just if women are dying, which, of course, is the worst of the outcomes. It’s also her health, not bouncing back, right, and what that means not only to her but what it means to the child moving forward.
And we do see that over 12 percent, sometimes higher, of the deaths really come not even just after those two months, but the two months to the twelve months. Twelve percent of the deaths occur during that period of time, and that can be for a variety of reasons. Some might be related to mental health, but sometimes it’s missing symptoms, missing things.
And again, thinking about what’s going on in that family, mom is juggling maybe going back to work, making sure child is sleeping, making sure the house is running. I mean, there are just so many things going on, and so often we as women can let ourselves consider us last, right? And so it’s so critical that we make sure that women have access to the care that they need even after they’ve given birth.
Of course, we need to continue to focus on all aspects, again, because some of this is the health of the mother before she even gets pregnant is also a big part of it, because we see underlying health conditions that then show up, say, in the third trimester, like preeclampsia and other things that sometimes are related to what access did you have to care before, before you got pregnant. And of course, we could talk about contraceptive coverage and the importance of what–being able to get pregnant when you want to get pregnant.
MS. JOHNSON: And you also mentioned, you know, going back to work. One of the differences when you think about the U.S. compared to our peer nations is paid time off and paid leave, and so how does that kind of also factor into–and I guess we can say if you–I know we are short on time, and it’s hard to wrap some of these things up in really quick sound bites, but I do think that’s a really, kind of important point to touch on. So the difference in when mothers and birthing people are expected to go back to work in the U.S. versus other countries where they have paid time off.
MS. BROOKS-LASURE: Well, I think that, again, when you really think about what’s going on in the family, what we’re juggling, what you’re juggling as a parent during those first couple of months as you are juggling for some parents like am I going to nurse, do I need to pump at work, will I–how do–I’m not sleeping, how do I get back into the office, it can be a challenge. And I think that we have to continue to work to make sure that we are really supporting families as they go through this stage. And it’s for that family, certainly for that parent, that child, but it’s also, I would say, for us as a country, making sure that we have a healthy workforce. Making sure that we have a strong economy is really making sure that we are supporting families during these really critical transitions.
And so we are out of time. Thank you so much for joining us, Administrator Brooks-Lasure. This has been an amazing and vitally important conversation, and thanks to all of you for joining us here at Washington Post Live.
DR. DOTI: Hello. I am Carlos Doti, head of U.S. Oncology Medical Affairs at AstraZeneca. I am responsible for leading the development and delivery of the medical strategy across AstraZeneca’s U.S. oncology portfolio.
I am pleased to sit today with Ricki Fairley and Dr. Ryals to talk about the importance of clinical trial diversity.
At AstraZeneca, we are driven by a purpose to deliver life-changing medicines to all patients, especially those from historically excluded populations, and I’m excited to sit down with you both to get your perspectives on the role that clinical trial diversity plays in patient outcomes and work that you’ve done to drive this change.
So let’s drop right into it. Dr. Ryals, as we look into clinical trials today, what do we see?
DR. RYALS: So when we look at the state of clinical trial diversity today, what we find is that trial participants do not reflect the diversity of the underlying patient population. So for example, although Black people account for about 13 percent of the U.S. population and cancer mortality rates are highest among the Black community, less than 5 percent of oncology clinical trial participants are Black.
Moreover, we also see that there are a series of system-level factors contributing to these inequities, including trial eligibility criteria that disproportionately exclude people of color, lack of partnership with Black and brown communities in trial design, also geographic and financial barriers to trial participation, as well as inadequate diversity among trial staff. And honestly, sometimes it’s the biases held by trial staff that result in some patients not being asked to participate in a trial.
DR. DOTI: So how has lack of representation in clinical trials affected the health outcome of this population?
DR. RYALS: So I think the way to think about this question is through the lens of access to care. So there’s this common misconception that clinical trials are this last resort after all options have been exhausted, when the truth of the matter is that clinical trials are often an avenue to getting access to the latest, most cutting-edge therapy for your disease. And so lack of diversity in clinical trials means that some patients are not able to access potentially life-saving treatments.
Furthermore, lack of representation in clinical trials also affects our ability to examine whether drugs are effective and safe across different populations, and in this age of precision medicine, where we’re learning about how genetics, your lifestyle, your environment, all impact drug response, it’s critically important that we have diverse representation in clinical trials. Otherwise, we run the risk of developing drugs that may be less effective or even pose greater safety risks in diverse populations.
So, Ricki, can you tell me about the work being done with TOUCH to improve clinical trial diversity?
MS. FAIRLEY: Two years ago, we did a research study because we wanted to understand what the barriers were to why Black women weren’t participating in trials, the emotional barriers, and what we learned was, first of all, doctors do not invite Black women into trials. There’s a lot of bias there.
But really, more importantly, is there’s a fear of the unknown, and people want to kind of blame it on that earned medical mistrust in our community, which is there, but it’s really they think they’re going to get the sugar pill and die, and they don’t understand the science, just the basics of the science. And we learn by giving simple messages from the voice of trust, the voice of a breast–another breast cancer survivor that’s had a similar experience, you can communicate the–and educate about the science in very simple terms, and they understand it and get it, simple things like, “You know the Advil you took last week? It was in the clinical trial. That heart medicine you gave your dog was in a clinical trial.” And when you explain standard of care and that you’re going to get a better quality of care, they say, “Sign me up because I want to live.”
And so we learned very quickly that there’s a way to conduct the messaging that works. So we launched a campaign called When We Trial, WhenWeTrial.org, with a lot of video content and breast cancer patients talking to us, for us, by us, with us to explain the science. And it’s working. We’ve now signed up 10,500 Black women into clinical trial portals in the last year because they’re getting it, and we know that the messaging is working.
DR. DOTI: So clearly, a lot of work to be done.
So let me ask you both the same question. As we look into the future, what are you most focused on? Let’s start with Dr. Ryals.
DR. RYALS: So if it’s okay, I’d like to answer this question from two perspectives. So first, as the head of health equity research at an oncology tech company specializing in real-world data and real-world evidence, I’m hyper-focused on how we can best leverage data to accelerate clinical trial diversity efforts.
For example, at my company, we’ve developed data-driven solutions to support trial design with equity prioritization, including setting enrollment targets and optimizing trial eligibility criteria and site selection to meet enrollment goals for diverse patient populations. And then I would say, second, as a Black woman with a family history of cancer, I do feel this deep sense of responsibility to share my knowledge and expertise with my community every single chance that I get. So for me, this means sharing with my family and my friends about the benefits of participating in clinical trials while also addressing their concerns, especially as it relates to past experiences of medical mistreatment and mistrust of the system. These are real concerns in my community, but I don’t think they’re insurmountable if we learn to just partner with communities in identifying a path forward.
MS. FAIRLEY: And we’re doing just that. We are going into the community every week at an event and trying to do iconic things and deliver our messaging, and our mission is to go to where Black women live, work, play, pray, and slay to help them understand, to educate, and to talk to them one-on-one about what a trial is, how it works, and engaging them.
We also set up a nurse navigator program. So we are helping design trials, write the messaging for the informed consent and the marketing materials for the trials to attract and engage Black women, and then provide like a fairy-godmother nurse navigator service to keep them in the trial, to keep them–you know, keep them happy, keep them content, keep them going with the trial, and staying with it.
And we really just want to advance the science. We need better drugs. Black women have a 41 percent higher mortality rate, a 39 percent higher recurrence rate than White women, and we’re getting breast cancer younger and at later stages. And we have to change that, and it’s got to be done with better medication and better science.
DR. DOTI: Ricki, Dr. Ryals, thank you so much for sharing your insights and experience.
And now I’ll hand it back over to The Washington Post.
MS. JOHNSON: Welcome back, and for those who are just joining us, I’m Akilah Johnson, a national health care reporter here at The Washington Post, and welcome to Washington Post Live.
I am now joined by Dr. Joseph Betancourt, president of The Commonwealth Fund. Dr. Betancourt, welcome.
DR. BETANCOURT: Thank you so much for having me. I look forward to the conversation.
MS. JOHNSON: Great. So am I. Let’s go ahead and get started. So, you know, there was a study that came out recently that I reported on myself, and it found that Black Americans had experienced an excess death of–an excess of 1.6 million deaths compared to their White counterparts during the past two decades, and that there has been a period of progress, and then things plateaued. And then the pandemic ballooned things and just made the crisis, right, like exponentially worse. And so we’ll get to the drivers in a minute, but what I want to ask you is, what is going on here? Why does it seem like we’re going in the wrong direction, Dr. Betancourt?
DR. BETANCOURT: Yeah. So it’s a great question, and it’s a sad reality, I guess, is what I’d say.
The issue of health equity and health disparities, quite frankly, are built into our nation’s history and our national fabric. We have, since our inception, had a segregated health care system. It’s obviously gotten better over time, particularly in the sixties with the Hill-Burton Act and integration of hospitals. But ultimately, what we understand is that different communities have benefited at different rates from our investments in health, our investments in health care, our investments in technology, and this is an issue that is profound as it is persistent.
And as you mentioned, I’ve been doing this work for the better part of 25 years. I’m a primary care doctor. I’ve been involved in health equity from the public health standpoint, from the policy standpoint, and we were making progress, slow but steady, I think, with some seminal moments. I’d say one being the release of unequal treatment, an Institute of Medicine report in 2002, that I really–I really believe, in an evidence-based way, sounded a national alert in ways that other people previously hadn’t heard it about how these disparities weren’t just about the social drivers but also about the care that people receive. I think we were making progress over the last 20 years. Health care expansion, health care coverage expansion allowed us to chip away as well.
But as you said, the pandemic really set us back. We knew it was going to happen, given all the factors related to the pandemic. We knew that, certainly, man-made and natural disasters disproportionately impact vulnerable communities, and if you had a chronic condition and you were infected by covid, you were going to do less well. And that really defined many of our communities across the country.
MS. JOHNSON: You mentioned–what was it?–2002, a clarion call, but I think we can go even back right to the Heckler Report in 1985.
DR. BETANCOURT: Perfect. Yep.
MS. JOHNSON: Right? I feel like there have been these moments where the issue comes up, where it is kind of put out there in stark relief that there are these huge gaps in who lives and who dies. Attention is kind of focused on it, and then the spotlight goes away. So how–the pandemic put the spotlight on it, right? How do we make sure the spotlight stays on it, Dr. Betancourt, and we don’t end up in 20 years having the same conversation?
DR. BETANCOURT: No, that’s exactly right. I mean, you go civil rights movement, sixties; Heckler Report, eighties; you know, unequal treatment, 2000. And then we have our national reckoning on racism with the murder of George Floyd, which I think for people like me who have been committed to this area of health equity, it was an incredible window of opportunity. It was a time–then compounded by the pandemic, both of those things combined–where we said, look, this is the impact of health equity, and these are the–these are the set of things that we’ve been lying and waiting to do for years. It’s been incremental progress, drip, drip, drip, never at scale. 2020, 2021, gave us an opportunity to really engage in a whole bunch of different activities to move this forward.
Now, your question is an excellent one. Each one of these windows, you see a flurry of activity, and then you see the plateau. A flurry of activity and then the plateau. And I think for us who care deeply about this issue, we are really committed to assure that this latest window that’s open, that we are going to drive sustainable, meaningful change.
I think in the past, after these inflection points, there’s been a lot of aspiration and maybe a little bit less execution. I think now we see a lot of different efforts nationally taking root in ways that I certainly in my career have never seen before. But, you know, we will see. This is a day-by-day effort, and this is an effort that we can absolutely not take our foot off the gas on ever.
MS. JOHNSON: Now, I would say have we–to a separate question, have we really reckoned? Has the nation really had a racial reckoning, or, you know, are we just talking about these issues more? And one of the things that I would say also is, you know, systemic racism has come up a lot in light of the pandemic and George Floyd, and it has been a root cause that has been identified as a driving factor in a lot of these health inequities. So I’m going to ask you to explain what is systemic racism, and then I’m also going to follow up and say, you know, is that too blunt of an instrument when talking about this? Because that is a question that was posed to me by some researchers that when we talk about systemic racism, it’s like too blunt of an instrument, and we need to kind of disentangle that and get into the nuance of what that means. So first, define it, and then should we get into the nuance of it?
DR. BETANCOURT: Yeah, it’s fair, and it–you know, I think these words get very stigmatized, and I think, you know, for many years–and I’ll answer yes–we did not have our final reckoning. These are these inflection moments with reckonings about race, but, you know, it’s clearly not solved.
Ultimately, I think what we understand is if you look back at our nation’s history, we have had a deliberate set of policies and practices that have disadvantaged communities of color and particularly the African American community. You could list them out. This is–you know, this shouldn’t be political. The history is very evident here. Whether it be redlining in mortgage lending, which created segregated neighborhoods and neighborhoods that became vulnerable and underfunded, whether it became transportation policy, which drove major highways through growing and burgeoning communities of color, disabling them, whether it be the different ways in which different substances are treated in the criminal justice system and the impact on communities of color, cocaine versus crack being one that we’ve talked about a lot in the eighties, but even still how the opioid epidemic now is being treated from the standpoint of rehabilitation, not so much criminalization, as opposed to when issues around substance disproportionately impacted communities of color, there are a series of those public policies and I would argue even health policies that are systemically racist, that were built to disproportionately impact certain communities.
And again, when we think about health care, we think about medical segregation experimentation. We’ve talked about the Tuskegee syphilis study. There is no shortage of evidence as to how a systemic approach to policies and practices that, yes, was racist has contributed to these very significant disparities.
Now, maybe I’ll end with this last point. For all too often, we’ve talked about these things, and it seemed fairly nebulous, and people said, well, you know, okay. But what we now understand is that there is a biological impact of racism on people. The more you think about your race, the more you experience racism, it isn’t just you not feeling well on the outside. This literally puts you in a high-stress state. It leads to premature aging. It leads to premature incidents of chronic conditions, higher cortisol level. I would argue, related to your previous conversation, an impact on maternal health and infant mortality. This is not just sociologic. This is biologic, and we have the proof to demonstrate that this is neither fabricated–yes, it’s historic–neither non-evidence-based–it’s completely evidence-based in our science.
MS. JOHNSON: And I believe what you’re describing is called “weathering,” right, kind of the biological impact of chronic stress assaults and the physiological changes that happen when your body is constantly being assaulted by stress hormones, cortisol, and all the other things that are constantly flooding and creating the kind of fight or flight, and your body is constantly primed, right, in that state.
DR. BETANCOURT: That’s exactly right.
And, you know, to be fair, many people experience that for a lot of different reasons. But when you think about race in America, there is a concentration of this. And to your earlier question about where do we go from here, each one of these inflection points is always accompanied by very, very significant pushback because these issues are difficult for our nation, and the pivot is to then get incredibly defensive.
And so we’re experiencing that now as we try to make progress. We still have a very large movement that is trying to weaponize this as woke or irrelevant or not evidence-based or having certain political nuance when, in fact, the evidence is clear. And these issues are, fortunately, being tackled in ways at which they haven’t before.
MS. JOHNSON: And you talked about kind of the historic nature of systemic racism. I’m wondering if you could talk about some contemporary kind of examples to bring it to present as to what that looks like when you think about policies that create differential health outcomes.
DR. BETANCOURT: Yeah. And there’s no shortage of them. I mean, if you go back to unequal treatment, we understand that no matter who you are, where you’re from, if you’re underinsured or uninsured, you’re going to do less well. Communities of color are more likely to be uninsured, and it’s not because they’re not in the workforce, ways in which many people traditionally get their health care. It’s that they tend to work in jobs that don’t provide employer-based insurance, multiple part-time jobs.
So again, what we see is that the lack of opportunity plays out. It plays out in health care coverage, and I would say it plays out in a variety of different policies, coverage policies that absolutely contribute to disparities.
If we zone in now on the area that I’ve done a lot of my work on, disparities in health care, and the quality that patients receive, we understand that if you have two patients, all things equal about them except for they color their skin, who present to an emergency room around the country with chest pain, one Black, one White, patterns have been demonstrated that show that minorities significantly less likely to be referred for cardiac catheterization, angioplasty, bypass surgery, cardiology, specialist care.
We have the same pattern when we look at referral for renal transplantation among those with end-stage renal disease.
The literature, the peer-reviewed literature, which is respected and revered in the halls of academe and drive our health policy and practice are replete with tens of thousands of carefully controlled evidence-based studies that show that disparities in the quality of care the patients receive, even when you factor out insurance status and some of the social drivers that we’ve been talking about, still exist. And yes, they’re, in part, due to communication challenges and mistrust and stereotyping and a series of policies in the health care system that still are discriminatory and have vestiges of structural racism in them. And I would say that to many, they’re invisible, and to others, they’re acute and life-threatening.
MS. JOHNSON: And I want to kind of go back to social drivers because I think for some people, to your point, they are invisible, and to other people, they are very acute. And so one of the things that we hear talked about quite a bit now are also, right, social determinants of health. And I guess I’m wondering if we can kind of unpack what social determinants of health mean and how–one, I’m going to ask, do they affect everybody, or is this just for specific people, and kind of do they affect some people differently than others, if that makes any sense?
DR. BETANCOURT: Yeah. You know, we like to give–in health care and academia, we like to give fancy terms to things. This is basic. Here’s–the bottom line is that–and it’s not rocket science, and it shouldn’t be complex to anyone. Where you live and the environment that you live in, your ability to access fresh fruits and vegetables and engage in exercise, two things that are absolutely essential to creating health and well-being, the type of job you have and the stress it provides on you, the environment you live in as it relates to violence, all of these social drivers–whether you can pay for your utilities, all of these are part of what we call “Maslow’s hierarchy of needs.” They’re just things that we need to live and survive, and they absolutely impact our health. I think nobody would deny that what we call the “social drivers,” the conditions in which we live impact our health and well-being.
So to answer your first question, yes. If you live in an environment that has less access to fresh fruits and vegetables, you’re unable to exercise, you’re unable to get a good education, that all those things will absolutely impact your health, and that can impact anyone who lives in those environments, no matter the color of their skin. So the social drivers have an impact, agnostic to race and on anyone, and I think anyone and everyone could understand that.
Now, the truth of the matter is that those negative social drivers are clustered and disproportionately impact communities of color, thus, leading to greater disparities and a greater impact on them. Now we tie it back to some of those policies I talked about. Those social drivers that impact communities of color weren’t created by chance or by coincidence. Oftentimes there were very deliberate policies about how neighborhoods were established, where highways would go, where schools were placed, the type of funding that was provided to certain communities. So we need to understand these things are all connected.
So yes, the social drivers impact everyone. Yes, they disproportionately impact communities of color. No, it wasn’t–and it isn’t by chance people don’t choose to live in bad places, and we do need to understand the balance between personal responsibility and responsible options. But the social drivers, the social determinants are the single largest contributor to these very large disparities that we’re trying to tackle today.
MS. JOHNSON: And so then I was going to say, right, so how does the social determinant of health affect cancer and cancer disparities and cancer outcomes?
DR. BETANCOURT: Absolutely. When you think about cancers like colorectal cancer, even research that we’ve done on breast cancer, we understand that eating well, having a healthy lifestyle is going to be important from the standpoint of prevention. So these social drivers aren’t only connected to things that we commonly talk about, which is, for example, things like cardiometabolic disease, diabetes, which people can make a very clear connection, right–not eating right, diabetes; high blood pressure, not eating right, not being able to exercise, being overweight–high blood pressure, but they also connect to cancer. They absolutely connect to cancer. So you have the social drivers impacting these cancer disparities.
You also have some of the access issues, having lower levels of insurance that then limit your ability to get a mammogram, a GYN exam and PAP smear to address–to prevent cervical cancer, you know, blood tests and a digital rectal exam to prevent and identify prostate cancer. We now have technologies, high-resolution CT scans that allow us to detect lung cancer in smokers at very early rates. All these things become unavailable to large populations.
And so not only are they not able to do the things that focus on prevention, but then when we think about the common things that are recommended for everyone around screening, they’re less accessible and less available. And I would further add that even when you have insurance, oftentimes not all insurance is alike, and some of these technologies diffuse years later into communities of color, further contributing to these disparities.
So, you know, it’s a series of steps here, but we need to account for all of them, and we need to address all of them. We can’t just address one or two along that continuum.
MS. JOHNSON: And so I’m wondering if you can leave us with a concluding thought when we think about–you know, we’ve touched on chronic conditions, and we’ve touched on cancer, which are two of the factors that are driving premature death in the United States. And when you think about life expectancy in the U.S. and how it has dropped for two years consecutively while other countries have rebounded since covid, the big kind of concluding question that I’m wanting to know is, what is going on in America, the richest kind of country on earth, that we are failing to do something so fundamental as keep our citizens alive?
DR. BETANCOURT: You know, it’s a tragic reality that we see at The Commonwealth Fund, in our kind of international comparison, year after year. We pay the most. We get the less for our dollar. We have seen decreases in life expectancy, largest avoidable hospitalizations. And we have, you know, many would argue, some of the best minds in health care, the best minds in science, the best technology. But I think our nation, sadly, has failed to have the moral courage to really deploy these resources in an equitable way, absent the political conversations about socializing medicine and all these different factors, which, quite frankly, are a distraction to the realities that we’re calling out here.
An equitable distribution of these resources will allow for the improvement of the health and well-being of all Americans and will narrow these disparities. And so the pandemic, again, taught us this lesson. We had people, my patients, who weren’t able to come in for care for a year with diabetes. Of course, they did less well, and so that–you know, we see that here and–
MS. JOHNSON: Absolutely. And I don’t mean to cut you off, but we are out of time, and I feel like I could talk to you about this all day. Twenty minutes is not enough, but that’s what we have. So I want to say thank you for this fascinating conversation.
MS. JOHNSON: Dr. Joseph Betancourt, we appreciate your time.
DR. BETANCOURT: Thank you so much, and I appreciate your time as well and wish everybody all the best.
MS. JOHNSON: And I want to thank all of you for joining us. To check out what interviews we have coming up, please head to WashingtonPostLive.com and register to find out more information about all of our upcoming programs.
I’m Akilah Johnson, a national health care reporter, and again, thank you for joining us.
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