Peter J. Leary, MD - phaware® interview 540

How Stigma Blocks Meth-PAH Treatment and How to Stop It

Patients with methamphetamine-associated-PAH often arrive at clinics already carrying heavy shame. But shame shouldn’t be part of their medical history. In this compelling episode, Dr. Peter Leary explains how stigma—from both society and providers—can delay life-saving care. Learn how a change in mindset, language, and compassion can transform outcomes for a neglected and growing patient population.

This Special Edition Episode Sponsored by: Johnson & Johnson

My name is Peter Leary. I direct the pulmonary hypertension program at the University of Washington and have been taking care of patients with pulmonary hypertension, in one form or another, for about 20 years. I’m really deeply focused both on the clinical care for patients with pulmonary hypertension, but also research that is important to patients with pulmonary hypertension.

My mandate here today is really to think about and talk a little bit about methamphetamine-associated pulmonary arterial hypertension. I kind of want to think about this from two perspectives. I think those two perspectives are complementary, in most cases, but in some ways can also be in a little bit of conflict, and I hope to explain really what I mean by that.

I'm going to start with thinking about methamphetamine-associated pulmonary hypertension from the lens of research. This is something that a lot of us are interested in. A lot of us are devoting time to. There's a multi-institution study that's funded by the NIH, that includes several of us, to try and understand a lot of those questions in methamphetamine-associated PAH that we don't really have a good handle on. We know now that methamphetamine causes PAH. We don't know a lot of things beyond that. We don't know how much methamphetamine it takes. We don't know whether or not there are characteristics of patients that make them more susceptible or more vulnerable to methamphetamine-associated PAH when they use methamphetamine. We don't know whether or not there are specific drugs that may be more helpful or less helpful in methamphetamine-associated PAH.

I think all of these questions really are fueling a number of research efforts. I think that those are important. I think that those are valuable. I think that those are going to be the seeds of tools that we may use and think about in the future. I don't, at any point, want to lessen or minimize the importance of the research around methamphetamine PAH. In fact, we partnered not only in terms of this observational registry, we partnered with patients that have methamphetamine-associated PAH in our clinical trials of H2 blockers, of Valsartan, other trials that we're working on repurposing drugs, and have found really a lot of enthusiasm in that community and excitement about trying to make the life better and improve treatments for all patients with pulmonary arterial hypertension. I think that research is good, and that's important.

The other side of this, though, is the clinical care. I always feel like I'm a doctor first. I would say that one of the worries is that we have increasingly, as a field, really had this kind of research focus on methamphetamine PAH. I think that that's good, like I said, but it runs the risk of making it seem methamphetamine-associated PAH may be somehow unusual, or a different group, or requires really special consideration.

I think that the reality is, in our practice, at the University of Washington, we really view methamphetamine-associated PAH like we view all of the flavors of PAH. We think about methamphetamine much like a comorbidity, something that that patient is wrestling with, like diabetes, or obesity, or whatever else the pieces are on their individual repertoire that add complexity and require consideration as we're thinking about how to move forward.

We don't think about methamphetamine PAH as some kind of weird, unusual, or distinct group that requires a totally different playbook. I feel like that is really, really, really important. The reason why I say that is that, unlike some of the other comorbidities that I've mentioned, there are many places throughout society and throughout the medical system that really stigmatize methamphetamine use or drug use of any kind. I think a lot of patients, when they get to us, are worried about being open and honest about the challenges that they've face.

No one would ever be worried about telling us that they had diabetes, but people are very worried, oftentimes, about telling us that they've wrestled with methamphetamine in the past. I think that that's a shame, because it reflects this experience of having been treated differently, having been stigmatized, having been pushed to the side, or otherwise felt to be lesser other than because of their addiction. I think it limits a lot of aspects of care. To be honest, it also makes research more complicated. A lot of our questions are harder to answer when we don't have those kind of open honest dialogues with each other.

So we really, in our practice, spend a lot of time trying to break down that sense of difference with methamphetamine-associated PAH, trying to remind our patients coming in the door that, hey, just because your PAH may have come from methamphetamine does not mean that we're going to treat you differently. We're not going to use different drugs. We're not going to put you through different tests. We're not going to have you do things different than we would for the broader PAH population. We may suggest, if you're still wrestling with addiction, that there are extra tools that can help you live a healthier and happier life by partnering with our friends in substance abuse, and thinking about other tools that are there. Just like if somebody had diabetes, we would partner with endocrinology to help manage that comorbidity. I think it's important to recognize that our mental model is not to think about methamphetamine PAH as something different.

I've had this conversation with colleagues, and I think a lot of intelligent people have a lot of thoughts, and I think that it's okay for people to disagree. I think some programs really lean into the idea that part of a treatment plan has to be stopping methamphetamine. I think that that general feeling is rooted in the idea that we are fairly confident that if a patient can put methamphetamine in their rear view mirror, they are very likely to do better over time than somebody who keeps using methamphetamine, because methamphetamine is probably a little bit like throwing gasoline on the fire when you already have PAH. I don't disagree, even for a second, with the idea that it is a hugely important part of treatment to treat the addiction, to stay abstinent from methamphetamine, and use that as one of the tools to promote health.

That said, we also know that methamphetamine addiction is incredibly difficult to treat. The medical community has tried a lot of solutions, and it can be very difficult to overcome this addiction. So, our personal approach is not to make PAH treatment dependent on staying abstinent from methamphetamine. We oftentimes feel as though we can use PAH treatment as a bridge to sobriety. If we can get people feeling good enough, doing well enough, and improving from the standpoint of their pulmonary hypertension and their heart failure, we oftentimes provide them enough time to beat their addiction.

I can think of lots of my patients who have come in and have really been struggling with addiction, were not able to give it up in the early stages. But as we got them onto better regimens for PAH, as they were feeling less short of breath, as they were feeling kind of more optimistic about all those aspects, they then had the time, the effort, and the support, really, to help them get through their addiction, and then have been abstinent for many, many years after that.

Obviously, this is a very personal journey. Like anything else in medicine, there are some successes and there are some failures. There are setbacks, and there are pieces that move forward, but I would say our personal philosophy on this clinical care, while we think it's important to separate out methamphetamine-associated PAH for research to see whether there are things that we need to be unique and doing differently, our mindset on the clinical side really is to say, nope, this is just like everyone else we take care of. Everyone we take care of has individual nuances, pieces that fit together in different ways, but that global approach to how we care for their PAH tends to be fairly similar regardless of what the source of their PAH is.

The idea that there are lots of biases that come into addiction, both on the society side, the patient side, and the provider side are huge. It is not uncommon. We probably get one to two referrals a month from an outside pulmonologist or cardiologist that kind of asks us, almost apologetically, would you consider treating this patient with pulmonary arterial hypertension, oh, even though they're still using methamphetamine? I would say there is still a perception among a lot of providers that this is a group that we wouldn't provide these standard medical treatments for. I think that some of the arguments that I hear from friends and colleagues are that PAH care is expensive, and that part of the buy-in on the patient side really are to do all the things they possibly can to support their health, and that's part of going into a course of PAH treatment.

My gentle pushback on that always is yes, but we don't have these contracts with the rest of our patients. If somebody comes in with diabetes or obesity, we don't require their hemoglobin A1C to be below a certain level before we'll treat with them with PAH. We don't require their obesity to be below a certain BMI before we will treat them for PAH. While I can understand the rationale and I can understand the motivation, and I think everyone's heart is in the right place and kind of recognizes the idea that successfully treating the addiction is as important as anything we do for the pulmonary arterial hypertension. I agree with all of that. The idea of restricting care in methamphetamine-associated PAH is something that I personally don't agree with. I don't think it's really fair kind of within the spectrum of comorbidities that we wrestle with with PAH.

I still like the people that have these views. I understand where they're coming from, but that certainly is not our philosophy of what to do. We've seen a lot of patients who, when you go into it with that philosophy of supporting them medically through their addiction using all the tools we have, including treating their PAH, we find a lot of people are able to pull everything together and really build the building blocks of a healthy life that starts getting better and better as all of these pieces fall into place.

The other thing that comes up, and I think this is also a real question, is, what about advanced therapies? I did much of my early training in a part of the country where heroin addiction was very common. There was rightly a lot of concern, at that time, about, can you send somebody out of the hospital with an IV in place? Can you put them on long-dwelling infusion therapies?

Our experience with methamphetamine, for what it's worth, is very different. Very few people have substance use disorder with methamphetamine where they use it intravenously. So, those concerns, while I understand where they're coming from, in our experience, don't apply as often. We'll normally have a frank conversation with patients, if they're in a place where they are needing advanced therapy, perineural therapy, and we will say, do you think that you can manage a pump? Have you ever used your methamphetamine IV, or is this something that's always been inhaled? Then, like we would with any other treatment, we will work with them and think about all those personal factors to think about, hey, well, what is the next best step? Does this feel like something that you can do? Should we think about IV therapy or sub-Q therapy? Or now, maybe, should we think about sotatercept? Those pieces are present in all conversations, and so I don't want to overweight them for patients that have meth-PAH, even though I understand the hesitation that many physicians have when thinking about those conversations.

In our experience, we have really seen what we would call kind of an explosion of new diagnoses of meth PAH. When I first started at the University of Washington, if you had asked me this question, I would've probably said 5% to 10% of our referrals were for a new diagnosis of meth-associated PAH. What we realized over time is 5% to 10% of those referrals were for people that fit our stereotype of what methamphetamine use disorder looked like. We had to recognize our own bias in that, and we started screening everyone.

So, part of our standard new patient blood work is looking for autoimmune disease, and HIV, and hep C, and all these things we've always looked for, but also doing a tox screen on everybody who comes in, and getting really, really comfortable talking about methamphetamine and the challenges it is, and the fact that it may be treating undiagnosed ADHD or anxiety, or all these other things that people may have been self-medicating for with methamphetamine. So, building kind of comfort, both with the conversations around meth, as well as screening everyone, we quickly recognized that, no, it wasn't 5% to 10% of our new referrals for PAH had methamphetamine-association. It was probably closer to 35% to 40% of our new referrals. Over time, that number is probably only creeping up. It certainly is a very big fraction of the care that we provide and has been one of the factors that has made the number of patients that we serve get larger and larger over time.

It's also a part that's easy to miss if you're not thinking about it for everybody who comes in. I think it takes a little while to be able to have that conversation and kind of do that testing, because of the stigma around addiction, that doesn't make people feel devalued or judged, regardless of whether or not they've ever used meth.

I think on a forward-looking basis, I think that the research piece... and this is one of the wonderful things about research, is that we're going to go into it with some ideas. I would say some of those ideas are thinking about trying to understand how meth translates into pulmonary atrial hypertension. If we can understand that pathway... And Dr. Vinicio de Jesus Perez and the folks at Stanford have implicated CESI and some of these other pathways. If we can understand that, maybe we can have these personalized targets and precision targets that help pause, or even reverse the damage from methamphetamine, even in those folks that are still working on overcoming their addiction.

Those questions, I think, are ones that I can conceptualize right now. But I think the reality is, as with anything in science, as we peel back the layers of the onion, we find other layers of the onion. So, I think that the research around methamphetamine-associated PAH may have benefit for folks that have methamphetamine-associated PAH. It may have benefit for the broader spectrum of PAH. For instance, I oftentimes feel like I see patients that have wrestled with methamphetamine that have really high pulmonary artery pressures, and that tells me two things. One, they may have severe disease in their blood vessels, but two, the right side of their heart really rose to meet that challenge. So, understanding what it is that may be adaptive for the right side of the heart may have kind of ripple effects of therapies that we can think about across the spectrum of PAH.

As with so many areas in science, a rising tide raises all ships. The more we understand about the pulmonary vasculature and the right heart, and all the ways that it can go wrong and can go right, the better we're going to be able to do for all patients with PAH.

I oftentimes tell patients with meth-PAH that are worried about whether or not we're going to treat them differently, hey, I love you the same as all my patients, and I really do. I really, really care deeply for all of my patients, and that is totally independent of what their pathway through life has been.

That's probably kind of the meat and potatoes of how we approach it. I will say the final piece is really just to recognize, and I think that this is something that pulmonary hypertension docs in the West have known here for a long time, and as the methamphetamine epidemic has spread East, is really to recognize that I think a lot of people have a picture in their mind of what methamphetamine addiction looks like. That picture in their mind may be informed by what they've seen on TV. It may be informed by patients that they've seen in the hospital. It may be informed by family members or loved ones.

But I would say the reality is that, now having taken care of lots of people who have wrestled with methamphetamine addiction, there is no single picture of what that looks like. I've seen patients that have wrestled with methamphetamine that are very high powered professionals and run what otherwise, to an outside perspective, would seem like a totally addiction free life. They're going to work, they're taking care of their families, they're helping their parents who are aging, they are kind of doing all of these pieces. I've seen patients that are wrestling with meth addiction that are working long hours and doing all those pieces. I have seen patients who are wrestling with meth addiction that have a lot of social vulnerability, who may have wrestled with homelessness. So, I think all of these things are true.

I think one of the biggest things, getting back to that idea that we treat patients with methamphetamine-associated PAH like everyone else, is to realize that methamphetamine addiction doesn't define somebody. It doesn't tell us what they look like or how they behave, or what they're doing in society. So, that kind of recognition and observation, I think, is a key way to kind of break down some of those barriers that stand in the way of really caring for this patient population. Yes, some people do have social vulnerability, but that's true whether or not they're wrestling with methamphetamine or whether they're not wrestling with methamphetamine. I think when we find those pieces, homelessness, all those other pieces, we, as a society, need to do better with trying to figure out how we can support patients in the setting of these vulnerabilities, but I don't think that that's something that's unique or specific to methamphetamine-associated PAH.

My name is Peter Leary, and I'm aware that my patients are rare.

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