Lana Melendres-Groves, MD - phaware® interview 528

Dr. Lana Melendres-Groves dives into her research on racial and ethnic disparities in PAH treatment. From differences in medication access to the role of social determinants of health, she explores how systemic barriers impact care and what steps can be taken to ensure equity and inclusivity in PAH management.

Hi, I am Lana Melendres-Groves. I'm at the University of New Mexico. I’m the Pulmonary Hypertension Medical Director of our Comprehensive Care Center. Today, I hope to dive into a little bit of the information that we have regarding how we care for different subgroups of our patients with pulmonary arterial hypertension. Often we are just struggling to understand the disease state and how to manage our patients. Now that we have really started to understand the disease better and have more modalities of treatments for our patients, it's really come to the forefront that there are potential differences in how we are managing different ethnicities races. So, some of the areas that I have really had a substantial amount of interest in looking into is are there differences and disparities in how we're managing patients? If so, what might those be? And how might we create more equity and inclusivity when we're talking about taking care of our patients?

In today's world, we have only a little bit of information from prior studies and registries where we are able to collect information on subsets of patients such as Hispanic patients versus non-Hispanic white patients. In that specific instance, what we saw was that there might be a potential difference in the types of therapies that the patients were receiving. Then, when we look at other registries, that doesn't seem to play out the same. So, as part of some of my recent publications and research has shown, our patient populations really just need more investigation.

My recent presentation on Hispanic versus non-Hispanic white patients in pulmonary arterial hypertension showed that first the claims database that we use, that our patient population that were Hispanic tended to be a younger population of patients. They tended to be of a lower economic status. They also tended to have a lower educational level. So, trying to understand if that may impact the type of care that they're receiving or what type of care they're receiving. And looking then into what medications these patients were being prescribed, how quickly after their diagnosis were they being prescribed and maybe even how many therapies at one time they would be getting as their initial therapies were of great interest to me.

We were able to collect data that indicated that not just the Hispanic population, but both the Hispanic and non-Hispanic white populations actually were not receiving what we would consider the standard of care, meaning giving them combinations of therapies, knowing that that will improve outcomes in terms of how long they live and how they feel and how many hospitalizations they may have.

In that situation, that brings up a completely different concern about how we are able to access medications. Are there barriers because of insurance and payers? Is it barriers because of access to follow up and management by experts? Then, when we look a little bit further into some of the results more specific to the Hispanic population, we found that what we think of as our sort of most robust medical therapy, which is a prostacyclin therapy, that they were much less likely to receive that as their initial therapy compared to their counterparts that were white.

It's a great question as to why they may be identified at a younger age. Some of it is that they also tend to be more likely to have a congenital heart defect. So, that's somebody who has been living with this defect since birth. So, [the patient is] probably is presenting earlier because of that. So, that may be one component of it.

We also, at least in New Mexico, see that there is a lot higher rate of connective tissue disease, which we know can be a risk factor for developing PAH. We still know that from the time of symptoms to their actual diagnosis is getting longer as opposed to recognizing those symptoms sooner and earlier and being able to diagnose it. But on the flip side, despite the Hispanic population being sort of younger at diagnosis, one of the recent posters that I presented at CHEST 2024 indicated that there was actually a substantial delay in initiation of therapies. So, comparing them to the white cohort, there was almost double in terms of the time to getting started on therapies for a first therapy and then double the time that it would take to get to a second therapy added on. And the difference, when we looked at triple therapy patients for the white population, it was about a year and a half from time of diagnosis to initiation of a third therapy. For the Hispanic population, it was three years. So, you may say they're being identified earlier because their symptoms are earlier because of other reasons, but yet they still are not being necessarily treated in the same manner.

And again, a lot of the individuals, especially in the claims database would say, well, we can't assess the severity of the disease and their risk status. However, in the poster that I presented, the data that was complete looking at the risk status for those patients, they were showing that they were in an intermediate or higher risk status. Meaning that you should be adding therapies to their regimen if you're following the guidelines.

So, of course, there are limitations to how we gathered this data through the claims database, which is really utilizing coding and payer information. But if it does play out that the Hispanic population is maybe not receiving prostacyclins, which tend to be a little bit more intensive in terms of care and needs, is that related to ethnicity or is that related to social determinants of health?

The other thing that we found was that the Hispanic population also tended to have an increased number of other disease processes, or we call them comorbidities. So, how does that play into our management of our patients? I think that for me, the most important thing is that we recognize that there may be differences in how we are approaching management of our patients, that we try to start to understand if that's related to race, ethnicity, social determinants of health, or something else, because it's only an acknowledging and understanding that that we would be able to move forward in a more inclusive and equitable manner.

What I will say is New Mexico is a minority majority state where upwards close to 40% of our population would identify as Hispanic. We also know that as of the census in the United States of 2020, we were approaching about 20% of the population in the country as being Hispanic with the anticipation that by 2050 we'll be closer to 40 to 50% Hispanic. So, even though in the current day, not every state may be the same in terms of the diversity that they experience, we are seeing that this is increasing. If we're not in a position to start understanding that now, in 25 years, we're going to be way behind.

I would say that in New Mexico we face many barriers. I think my colleagues would agree frequently, there is sort of a rural population that it's more difficult to access healthcare. There are multi-generational homes where often individuals aren't able to come in to be seen due to needing to care for children or for their elders. There are also the issues with just coverage.

When we look at the Hispanic population, and this has been shown on multiple occasions, is that it tends to be a younger age with which they're diagnosed as compared to the white population. Whether that means they have less access to certain types of insurances and payers, and if that could be a barrier. The continued cost of these therapies, which are very high, we're fortunate that there are a lot of opportunities for grants. But whether it could be language barriers that prevent individuals from being able to access those types of grants or understand them, as well.

So for us in New Mexico, we really look to implement a multidisciplinary approach, which includes a social worker who is working directly with the patient and their caregivers to understand what those barriers might be. And how can we work with them and through those barriers to still give them the care that they deserve. So those are, I think quite a number of the barriers we are seeing. We really are diving a lot more into social determinants income and education level, and when did somebody potentially come to the United States and what is their comfort level with accessing care? So, those I think are a few things that myself and my colleagues have been attempting to get more information on.

I would say that thus far in the studies that I've looked at, we haven't necessarily included drugs and toxins as sort of a specific measure. If it is captured, then it can be included, but there is a lot of missing data in terms of that. I will say that it's an area of tremendous interest and currently being looked at and studied through NIH funding. Hopefully there will be further information when it comes to methamphetamines and how that may impact potentially certain demographics of patients versus not.

One of the biggest concerns that I have for any patient is that they don't feel that they have the right or ability to advocate for themselves. We also know that often, women are less likely to be able to be heard and feel empowered to ask questions of their providers, specifically if they are of a different gender. Because this is a disease that tends to affect women more predominantly than men, my recommendation is take someone with you. Make sure that you have people who support you and that you yourself can advocate.

These types of podcasts and many of the other initiatives that are out there try and teach patients the information that they need to be able to then stand up and speak for themselves. That's huge, because I think that we look at PAH and in this situation, the way that we gage how severe someone's disease is in terms of how likely they're to survive for a certain period of time is often based off of what their functional exercise capacity is. That comes from what they tell me. So, there has to be transparency with your provider. You have to feel that you are being supported and that that isn't just you standing up for yourself, but the person you're going to is advocating for you as well. I think the more we can educate, the more we can advise and support these patients and anyone caring for these patients is the way that we move this forward.

I think that research and clinical trials are tremendously important. I will say that when I started the Pulmonary Hypertension program at UNM back in 2012, I was not per se what you would consider a research oriented clinician. I really was all about taking care of the patient feet on the ground, managing those patients until I recognized that if I wasn't working to provide opportunities to expand our knowledge and include my patient population in research studies, that I really wasn't doing everything I could for my community. So with that, it took go and learn, really becoming a researcher, because that's what the patients deserve. They should get to choose if they wanted to be part of a clinical trial, it shouldn't be because they couldn't be part of a clinical trial because it wasn't offered. One of the things at UNM that we have work to do is to build into the budget of our trials for being able to translate all consents into Spanish. So that isn't a barrier that if you speak English, you speak Spanish, you still have an opportunity to participate if you want. To make sure that our research coordinators, that we have someone who is bilingual so that they can actually communicate in their own language with the patient without those types of barriers, because we know that that excludes people.

I think that those are areas in terms of research and clinical trials that we need to do better, but we also just have to present it to patients. I think there's still a sense that maybe somebody is not getting the best care because they're being treated as a subject, but in reality, I think that I know my patients receive more care, more touch points, opportunities to be able to be heard, speak up, and then be included in the overall results so we understand better how to care for that population. Maybe it's no different, but if we don't have that cohort in the clinical trial, then we would never know. If we are not including these patients in our clinical trials and our research that we'll never understand how best to care for them.

One other piece that I would say is that we continue to look at our management of PAH patients. Even though our guidelines and the recommendations coming out from not only the United States, but our European cohorts say combination therapy, potentially triple therapy treat until someone's risk status is low. If that means they need three or four medications, that's what we should do. We still continue to see that patients are under treated and that we are not managing them despite knowing the information in terms of improved outcomes if we manage them appropriately. I think we ourselves, as the clinicians, continue to need to reassess how we're managing our patients and maybe why we aren't giving them more therapies.

Thanks so much for listening. My name is Dr. Lana Melendres-Groves, and I'm aware that my patients are rare.

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