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Connecting ALS is a weekly podcast produced by The ALS Association in partnership with CitizenRacecar. We aim to discuss research and technology developments, highlight advocacy efforts, and share the personal stories woven through the community.
Dr. Michael Cartwright:
If you look at our patients that are white versus our patients that are other ethnicities and races, they do seem to be a little bit different in how the disease affects them and how they live with the disease. And again, this is challenging to look at, but several studies have shown that maybe black patients with ALS, their disease progresses slower and they might live longer than white patients with ALS.
Jeremy Holden:
Hello everyone, and welcome to Connecting ALS. I am your host Jeremy Holden. On June 2nd baseball fans packed stadiums across the country to cheer on their local ball clubs and to celebrate Lou Gehrig Day, an annual event honoring the life and legacy of the Iron Horse. It's one of just three league-wide days celebrated annually honoring legendary players along with Jackie Robinson and Roberto Clemente.
Two of those fans were Matt and Laurel Kluth, who took a family trip from Kansas City to watch a Houston Astros game at Minute Maid Park. The couple share not just the love of the Astros, but a connection to ALS. Check out the link in the show notes to read more about their story. Well, every year the ALS Association recognizes people living with ALS, or those who have lived with the disease and who have made a significant impact in the fight against ALS through the Hero Award. This year's honorees, Patrick Dolan, Steve Kowalski, Joel Shamaskin, and David Tomassoni have all made a lasting impact for the ALS community. You can learn more about this year's heroes by going to the link in the show notes.
Meanwhile, the ALS association has been working with coalition partners across the country to pass legislation that would require insurance providers to cover biomarker testing. A biomarker test is a diagnostic tool that identifies specific biological indicators in the body, playing a crucial role in early detection, monitoring, disease progression, and tailoring personalized treatment approaches, thereby enhancing patient outcomes. The ALS Association believes that once biomarker tests become available for ALS, everyone should have access without delays or hurdles. Texas became the latest state to pass biomarker legislation after Maryland, Arkansas, Georgia, Kentucky, and New Mexico earlier this year.
Also on the advocacy front, lawmakers in Congress recently introduced the Justice for ALS Veterans Act. For veterans who die as a result of a service-related disease, their families are eligible for an increased compensation benefit. However, to be eligible, the veteran must live with the service-related disease for a period of eight years. This is unfair to the families of veterans living with ALS who are given a life expectancy of two to five years. To learn more about this important piece of legislation, check out our episode, The Fight for Justice for ALS Veterans at connectingals.org, or wherever you listen to a podcast, and click the link in the show notes to become an advocate.
While Monday is Juneteenth, also known as Freedom Day, it is a celebration of resilience marking the day when nearly two years after President Abraham Lincoln emancipated enslaved Africans in America, union troops arrived in Galveston Bay, Texas with news of freedom. Juneteenth was established as a Federal holiday in 2021. This day is an opportunity to recognize the ongoing fight for human rights inequality.
And according to the CDC, racial and ethnic minorities throughout the United States experience higher rates of illness and death across a wide range of health conditions. Additionally, the agency notes the life expectancy of non-Hispanic Black Americans is four years lower than that of white Americans. In recognition of Juneteenth, this week we are looking back on a conversation we had with Dr. Michael Cartwright, co-author of a study on racial differences in ALS interventions and talk about some of the racial disparities research has uncovered in the ALS journey and the need for more research to understand why.
Dr. Cartwright, thanks for being with us this morning.
Dr. Michael Cartwright:
Yeah, thank you for inviting me.
Jeremy Holden:
What do we know about the ALS community and the racial breakdown of access to healthcare diagnosis? Is there a difference that is meaningful?
Dr. Michael Cartwright:
We are pretty sure, we're not certain, but we are pretty sure that ALS affects people of different ethnicities at different rates. We're not certain about that, but that does seem to be the case. And in the United States, we think that white individuals are affected more often than black individuals, Hispanic individuals, or other ethnicities in the United States. And so we're not certain about that, but we're pretty sure that's the case. There's questions about, could there be under reporting in minority populations? Which is certainly possible. They may have different access, less access to healthcare, and so they're not captured in some of the databases that we have. But some of the better databases like some that the U.S. military maintain, where we think we capture everybody, we do think that there's higher rates of ALS in white individuals than in other ethnic or racial groups in the United States.
I guess I'd start there. I would then say that we know even less about this, but we do think that, if you look at our patients that are white versus our patients that are black or other ethnicities and races, that they do seem to be a little bit different in how the disease affects them and how they live with the disease. And again, this is challenging to look at, but several studies have shown that maybe black patients with ALS, their disease progresses slower and they might live longer than white patients with ALS. And again, we're not certain about this. There's there's lots of reasons that could be incorrect, but we think that's probably correct. We don't really necessarily think that this is something that is as part of our DNA or something that's necessarily a biological factor, that maybe there is more of a social component to this, or maybe there's something different in these groups as far as healthcare access and seeing physicians and how frequently they're seeing, all these kind of questions. I guess that would be my second answer.
What we wanted to do is we wanted to look at that question about, do our black patients live longer? Does their disease progress more slowly than our white patients in our clinic? And we particularly had this question, because we had several patients that were black in our clinic that had undergone a tracheostomy and had mechanical ventilation. And we thought maybe that was the reason that they were living longer, because they were making different care choices than non-black patients in our clinic. And so that's sort of where our study came from.
Our first author, Simone Cadre was a student, we have a health disparities neuroscience program at Wake Forest, and she was in that program at the time. She's a medical student now. She was the lead on this project and she had a great interest in health disparities and how this affects different communities in the United States. And so that's why she wanted to undertake this project to try and answer this question of why, if it's true that our black patients live longer than white patients, why is that, and how do we understand that? Is there is something we need to learn from that so that we can treat all of our patients in a different manner? And so that's I guess the background on how we came in into doing this project.
Speaker 3:
Dr. Cartwright, you mentioned your research and how African-Americans are more likely to get tracheostomies than Caucasians, and noting that earlier interventions actually might slow the rate of decline and give patients more time and options. To that point, what are some of those earlier interventions? What does that look like for the African-American population?
Dr. Michael Cartwright:
Yeah, that's a great question. And again, we did this study to try to answer those questions. And I'm not sure we 100% answered them, but we did get some insight into this question. For the ALS community, a lot of people know this, but there are different things that people choose, and they're not necessarily right or wrong, they aren't right or wrong, they're just different choices that people make in regards to this disease. Some people choose to take the FDA-approved medications, at the time it was riluzole. We now have riluzole, edaravone or Radicava. Some choose to take those medications, some choose not. Some choose one or both. Others choose not to take either one. Some of our patients will choose to have, if they have trouble swallowing, may have a gastrostomy for feeding purposes to increase their caloric intake and make it more easy to get medications and calories than taking it by mouth.
Some of our patients may choose to use non-invasive ventilation, so we sometimes call this BiPAP or there's different brands that are used to deliver this positive airway pressure. But we call it noninvasive ventilation and some of our patients will choose to use a noninvasive ventilatory mask and some choose not to. And then tracheostomy. And so some patients will choose to have a tracheostomy, which is a direct connection to the trachea and usually almost always involves mechanical ventilation along with the tracheostomy. And so we do know that those choices are very different in the United States, certainly in other countries. There are other countries where tracheostomies are much more common than they are in the United States. And that's partly the healthcare system and partly the support system and partly the culture and values and different values placed in different areas. And so we know that there are these choices that can be made that do affect the disease and how long people live with the disease.
And so those were some of the things that we looked at. Your question was specifically about our study. We looked at those questions in our populations. Again, what we did is we looked in our clinic from 2012 to 2016 and look at the people that had reported their race, and I think we ended up with 49 patients that had reported that they were black. And then we did matching. And so we took those patients, those 49 patients and then matched white patients that were similar age at onset and similar sight of onset. Was it their foot or their hand or their speech and breathing. And so then we ended up matching those 49 patients, like 137 white patients that matched similarly.
And so then we looked at those two groups to figure out, we've matched them for several aspects, but let's look at some other questions about some of these choices, feeding tubes and tracheostomies and noninvasive ventilation, these questions to see if there was a difference between those two groups. And so there was a bit of a difference. What we were mostly looking at, or one of the big questions we had was this question of tracheostomy. And it was around 5% of our white patients and around 15 or 16% of our black patients that had had a tracheostomy. If you look at some of those other questions, there didn't after we control for some variables, didn't look like there was a difference in riluzole use, Rilutek or riluzole use between the two groups.
Didn't look like there was a difference in the feeding tube use between the two groups. It did look like the white group might use non-invasive ventilation at a higher rate than the black group in our clinic data. And so that may affect ultimate choice of using a tracheostomy and invasive ventilation if they use non-invasive ventilation first. They tried to look into that question, but that's where the initial run through our data left us is that it did look like the black patients used the tracheostomy more frequently and also used noninvasive ventilation less frequently than our comparison white patients in the study.
Jeremy Holden:
Another finding that jumped out at me is the time to diagnosis, obviously a big issue in the ALS community. How quickly from onset of symptoms to diagnosis? Black patients about a year longer to diagnosis from system onset, any insight into what's causing that time gap?
Dr. Michael Cartwright:
Well, maybe, I'm not sure I know the answer, but it is important, you bringing it up is important because it's true. It was one of the main findings that we saw and it's been reported in other studies as well, that at least in the United States, it does appear that there is a delay to diagnosis in the black patients compared to the white patients. And that is worrisome, for sure. Certainly makes us think about healthcare access and if there are limitations to the black patients compared to the other group that we compared them to. Why that might be? It might just be less access to primary care physicians. It could be less access to neurologists, it could be less access to a second neurologist that's going to solidify that diagnosis or clarify that diagnosis of ALS. I think all of those are possibilities.
And so, those are certainly, I think those are things to investigate further, try to understand, try to eliminate those barriers if there are barriers, because we certainly want patients ... We want to figure this out early. If somebody has ALS, we want to know soon because we can start some of our interventions soon that we can't do later. We can involve patients in clinical trials early, and sometimes we can't if they've been living at the disease for too long because of the limitations of the clinical trial. And so we really do want to want patients to get their diagnosis quickly. We don't want them to have to spend extra time having unnecessary surgeries or diagnostic procedures or other things that could happen if there's diagnostic delay. So yes, we definitely saw that, it's an issue. It's something that we need to continue to try to improve, to understand so we can improve it and eliminate any barriers that may be out there for these patients to get the correct diagnosis.
Speaker 3:
Dr. Cartwright, in addition to needing to shorten the time to diagnose, what are some other areas in which we can better eliminate the gap between African-Americans and Caucasians when it comes to receiving care?
Dr. Michael Cartwright:
Sure, that's a great question. As I noted, we did note that a lower percentage of our African-American and black patients were using noninvasive ventilation compared to our white patients. And that is something that probably should be looked into further and try to address that, why is that occurring and does that ultimately result in our black patients using a invasive tracheostomy and invasive ventilation, mechanical ventilation? Again, not saying that one or the other choice is right or wrong, but why are those choices, why are those percentages different between the two groups?
Some of the stuff that we mentioned, I think probably plays into it. Longer time to diagnosis, maybe a slower disease progression perhaps, it's not entirely clear. We looked at our clinic and said, "Well, is there medical mistrust amongst our black patients?" I'm white. The other physician in our clinic is white as well, and so maybe there's an issue there. We looked at the other fantastic providers we have in our clinic, our respiratory therapists and physical and occupational therapists, and most of the people that work in our clinic are white. And maybe if we had more minority representation, more black professionals in our clinic, maybe we would connect differently with our patients patients and have different outcomes with our patients. And we certainly think about that. We've recently hired a new study coordinator who's black, and that I think that's fantastic and we would like to have more professionals that are of all different races and ethnicities in our clinic. And I think that will just improve care, not only in ALS clinic but across all of healthcare in the United States.
And so we've certainly looked at those issues in our own clinic and hopefully maybe our study brought some attention to that and other folks might think about that in their clinic. And again, I think about that as we do our other clinics, not just our ALS clinic, but maybe our MDA clinic and our pediatric neuromuscular disease clinic and some of our other populations and how we can improve. Connections and interactions and just therapeutic medical relationships with our patients as far as that goes.
Jeremy Holden:
Are you hopeful that the healthcare system at large is moving toward trying to chip away at some of these disparities?
Dr. Michael Cartwright:
Yeah, I'm hopeful, for sure. It's one thing to talk about it, another thing to do it. And so we certainly started our process by looking into it, examining it, looking at our clinic in particular, and maybe there's some lessons that could be learned from our clinic, maybe others could use in their clinic, maybe we can use in our clinic. And so that's important, for sure. I think that real change, which almost always involves money, I think needs to occur so that we can, as we said, improve access, improve access to medications, access to different devices and specialists. I'm hopeful that that will improve, and I do think we're moving in that direction. It would be great to see it happen quickly. Lots of things in medicine move slowly, and so it would be nice to see it happen quickly and to see real meaningful change for our patients, for people that are not our patients, but maybe in the future I think that would be, hopefully we'll see that in the next couple years.
Speaker 3:
Dr. Cartwright, I understand this was one of the first studies to really understand the relationship between race, disease, severity and intervention choice in ALS patients. What would be your recommendation for future researchers on what they should tackle next in respect to these topics?
Dr. Michael Cartwright:
That's a great question. There was a study after ours that was published out of the Emory Group in Atlanta looking at similar questions, not exactly the same way that we looked at them, but a similar idea of looking at differences between white patients, black patients. I think that's how they split up their groups, their racial and ethnic groups. And that was a great study. It was large. It looked at maybe 15 to 20 years of data. And so that was really a large study looking at that. I guess next steps, more studies certainly like the one that they did down in Emory in Atlanta, I think looking at this, we looked at it retrospectively, so we looked at our ... In 2018 we went back and looked at our patients from 2012 to 2016. We probably get more information as we do prospective studies. Someone, a patient shows up and we enroll them in the study and then we follow them going forward, instead of looking backwards. And so I think some prospective studies would be helpful.
I think trying to get more racial and ethnic minority individuals into research studies, clinical trials, outcome studies, biomarker studies, I think would be a great area of focus for the ALS community. And so I think those would be, from a research standpoint that would be a really great thing to do. And certainly, a lot of clinical trials are trying to do that. They're trying to involve less homogeneous and more heterogeneous population, people from different backgrounds. And so that will give us more information about these diseases. And even a clinical trial, as we look at a medication, we look at other things in that clinical trial. We do look at patients' breathing status and their weight or weight loss, and then we will look at their ethnicity and race and how does that differ amongst the two different groups.
And so, I think we can learn a lot by having more diverse patients in our clinical trials. I'm not sure we completely answered our question about if our black patients live longer, if it is because of tracheostomy. And so I think looking at larger numbers, again, prospectively looking at these questions would really help us to understand that. Quantitative research is what we did. Looking at numbers and outcomes. There's also qualitative research, talking to patients and actually sitting down with patients and families and asking how these decisions were made. It's hard to do qualitative research, but it's important. And so that research I think would be really interesting to actually sit down and get a narrative from patients as to how they chose to have a gastrostomy tube, a feeding tube or how they chose to use noninvasive ventilation or to get or not get a tracheostomy. I think that would be really enlightening as well.
Jeremy Holden:
Dr. Cartwright, really appreciate your time today. Thanks for stopping by.
Dr. Michael Cartwright:
Sure. Thank you so much for having me.
Jeremy Holden:
If you like this episode, share it with a friend. And while you're at it, please rate and review connecting ALS wherever you listen to podcasts. It is a great way for us to connect with more listeners. Our production partner for this series is CitizenRacecar. Post-production by Alex Brower, production management by Gabrielle [inaudible 00:19:54], supervised by David Hoffman. That's going to do it for this week. Thanks for tuning in. We'll connect with you again soon.