How to Achieve Health Equity

In this lesson, we'll be discussing the challenges in achieving health equity, what steps are being taken, and how decentralizing clinical trials plays a part. So health equity involves just thinking about having everyone have equal access to the same opportunities so as to have the best possible health outcomes. In order to think about health equity as it relates to multiple myeloma, this means that we need to be thinking about the factors that are driving disparities for this population. As long as we have those disparities present and not addressing those factors, then that means that we can never achieve health equity. So essentially when I think about health equity in myeloma and its relevance, I think about meeting patients where they are, recognizing what their unique barriers are, and providing personalized care that can help them overcome those barriers in a way that we then see that everybody has a level playing field and that outcomes are equivalent between different groups of individuals. I think the most important piece of health equity is a realization that if some groups benefit more than others, and especially as myeloma therapies get more expensive and some of the new therapies get centralized into larger centers, then that creates a health inequity because not everyone has access to those centers and to those clinical trials and to some of those benefits of those drugs. And so we're working really hard at creating health equity in cancer so that the screening is uniform. If you get screened in Alaska, get screened in Detroit, or if you get screened in Indianapolis, that the screening is equal and have equal access. Why is it so challenging to achieve health equity? So reasons why health equity is just so challenging is because it's hard to, in any individual or even at a population level, to identify all of the factors that are contributing to these gaps in care or these disparities. And so one of the challenges is that there isn't a single fix, meaning there isn't a single individual level intervention or even an interpersonal intervention that is going to lead us towards health equity. There needs to be a concerted effort by multiple people dedicated to doing this work and addressing problems on multiple levels. So when I say multiple levels, I always frame this in the manner of the socio-ecological model where we're thinking about individual determinants, interpersonal, then we're moving up, we're thinking about health system, and then we're thinking about the community as well as policy level. So unless we are addressing all of those determinants, then we can never truly achieve health equity because there's always going to be another factor in one of those circles that will continue to worsen these gaps that we currently see. Let's go into what's being done to achieve health equity. A lot of focus is on how is making care more equitable. And I think the biggest thing is for us re-examining how we're doing things, re-examining the access to drugs and especially how we design clinical trials. I would say one of the biggest breakthroughs is that we realize that we've been, that not only have people of different ethnicities and backgrounds not been involved in clinical trials, but a lot of the clinical trials we've been doing have been exclusionary to them. So when you look at neutrophil counts and anemia, black people have lower neutrophil counts for more anemia when they have myeloma. We've been cutting and pasting clinical trials over the decades using cutoffs for neutrophil counts of 2.0 and anemia being a hemoglobin of A, which has excluded a lot of people of different ethnicities in our clinical trials when you set those boundaries. So we've now realized that we need to rewrite clinical trials to be more inclusionary to be able to get more diverse populations in clinical trials. So one of the big initiatives has happened with the FDA and happening at the ground level of the investigators to change the way we write clinical trials to be more inclusionary and to be thoughtful of it. And so I would say that this one of the biggest initiatives has been how everyone has realized that there's a problem, has realized that we haven't reached out and now we're reaching out and being welcome. Myeloma can be very isolating to have. And now all the non-for-profits and the health tree and everyone has been reaching out and they have myeloma chapters for different ethnicities. I mean, where everyone is now has this idea and awareness and which has really transformed the way that we do clinical trials. And the benefit of that is that having diverse populations of clinical trials benefits everybody. And then the, again, trying to decentralize the clinical trials I think is important and has been an initiative. What is a decentralized clinical trial? So there are clinical trials at Carmanos Cancer Institute in Detroit, University of Michigan, Michigan State, some on the west coast of Michigan. So there are a lot of people who are excluded. Not everybody that has myeloma goes to those four centers. And therefore, if they don't go to those four centers, they don't have access to those clinical trials. And so if you want to go on a clinical trial for myeloma, then you'd have to travel all the way to those centers. I had a patient who was on a clinical trial who lived in Detroit, took a taxi to the train station, took the train to Ann Arbor, then took a bus from the train station to the university and did that for a clinical trial. And it took her two hours to go, four hours round trip for a clinical trial. Why can't we bring that clinical trial to her? It would be way easier for me to get our clinical trial coordinator and a lab kit to her, you know, to a clinic closer to her home or just have FedEx send the lab kit to a clinic closer to her where she doesn't have to drive or, you know, take a taxi, train, and bus to be involved in the clinical trial. So decentralized clinical trials is a way to bring the clinical trials to the community. Where people don't have to travel as much and to partner with people that are in the community that are already embedded in the community that where they already know the doctors, they already know the clinic because the clinic is like, you know, five minutes away from them. So instead of taking, you know, a taxi, train, and bus to a doctor that they only see every once in a while, they go right down the street and they have access to the same clinical trials that the big center does. And so that is really a paradigm shift because we have been using centralized clinical trials for, you know, a hundred years. And to change it and bring those really exciting clinical trials to the community is decentralized clinical trials, which gives us a wealth of information because only a fraction of patients, you know, can make it to the centers for these clinical trials. If we can decentralize it, that just brings it to rural communities, it brings the benefits of rural communities to Native American communities, to, you know, communities of color in the inner city and people in the suburbs. And bringing that, bringing all those people in would be, you know, would give us such good information about what is the real world like. Why aren't all clinical trials already decentralized at this time? Why don't we decentralize clinical trials right now? Because there isn't the infrastructure yet to do that. Is that the community hospitals that we have been in these silos for, you know, decades to have them cross-pollinate, to share our resources with other centers that aren't part of a consortium and to bring it there to the community requires a bit of work to build that infrastructure. The good thing is, is that some of that infrastructure is there and with really with the electronic medical records. So some of the decentralized clinical trials are already happening, but we want to bring, you know, a lab test for decentralized clinical trial versus a therapeutic doing therapeutic trials that are decentralized requires infrastructure that we're currently working on. One thing that we need to understand is how does this disease work? And if you look at how this disease work in a microcosm and just one set of people, you miss the broader picture of how multiple myeloma works. When we get more diverse population clinical trials, our understanding of the disease will be so much better. It will bring us that much closer to our cure. How can a community oncologist help increase health equity? I think the other important thing is understanding some of the disparities in care and knowing for a community doctor to say, you know, maybe I should talk to a myeloma specialist. I don't see this disease all the time. Maybe I should ask for a second opinion. Maybe I should. That helps level the playing field because while things are still very siloed in myeloma and centralized in myeloma, you can decentralize a lot of that care because of telehealth, because of phone calls. What is the Patient Advocate Foundation's Multiple Myeloma Health Equity Fund? The Patient Advocate Foundation's Multiple Myeloma Health Equity Fund is a financial assistance program designed to help multiple myeloma patients who are facing financial hardships. The fund aims to address health disparities and ensure that patients from underserved communities can access necessary medical treatments and services. The fund provides support for various needs including copays, deductibles, prescription medication, transportation costs, and other related health care expenses. The initiative is part of the Patient Advocate Foundation's broader mission to provide case management and financial aid to patients with chronic, life-threatening, and debilitating illnesses.