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Peter Leary, MD - phaware® interview 443

Nov 21, 2023

Peter Leary, MD talks about factors that might lead to over-treatment, under-treatment, or "just-right" treatment and emphasizes that guidelines are important but there is no "one-size fits all" approach to treatment of pulmonary hypertension. 

Peter Leary is the director of the pulmonary vascular disease program at the University of Washington. He also has a PhD in epidemiology and is very interested in clinical and translational research for patients with pulmonary hypertension locally, nationally, and internationally. 

Hi, I am Peter Leary. I am a pulmonologist in sunny Seattle, Washington, focused on pulmonary vascular disease. I direct the pulmonary vascular disease program up here in Seattle, and I'm also a scientist really focused on clinical and translational research for patients with pulmonary hypertension.

I'm excited today to talk about treatment. So at the end of the day, the entirety of my life is really focused on ways to try and help make life better for people with pulmonary hypertension in their families. Treatment is really central in that entire discussion. There has been an increasing push really over the last several guidelines to think about whether or not we're under-treating patients with pulmonary hypertension. Are we not putting them on enough medication to get good control of their disease and really get as much as we can out of the current drugs that we already have developed in pulmonary hypertension?

I think that that is an important push. I think that there is data that has supported that. But I think at the end of the day, it's also important to realize that treatment decisions in pulmonary hypertension are incredibly patient-specific. There is not a cookie cutter answer that says this combination, this drug, this approach is going to work for every single person that walks in the door. So my goal today is to really think about those treatment approaches, think about those treatment decisions, think about where we may do better as individual patient and provider groups and where we may do better as a field moving forward in terms of thinking about this.

I think any conversation about treatment really starts with are you treating the right thing? If you're treating the right thing, then you know the roadmap moving forward. I cannot stress how important this is. I cannot stress how often this gets confused in pulmonary hypertension. I think there are a couple big situations where this happens. I think there's a situation where people think that they have PAH and they don't have PAH, or their physicians think that they have PAH and they don't have PAH. In that scenario, you can add all the treatments for PAH that you like as aggressively as you want to be, and you will get all the side effects of those treatments and none of the benefit, because you're not treating the disease that you think you are.

I would say that I see patients every week as new referrals who have been started on regimens for PAH, have gotten a lot of side effects, don't feel any better. Really the answer is taking treatments away rather than adding treatments for PAH and then trying to get them plugged in with the right doctor for their disease, whether that be COPD or emphysema or left heart failure, or any of these other things that masquerade with high pulmonary pressures.

Part of the reason why started with this group in a conversation about PAH treatment is I already said that there's been a push to be more aggressive with our treatments for PAH. Part of that has meant a lot of patients who don't have PAH getting put on aggressive treatments. I think it's important as you're working with your doctor, as your doctor is thinking about things that may or may not help you to keep central that sometimes the right answer is not adding therapy. Sometimes the right answer is taking it away. That is very patient-specific, very individual and hard to put into a single mold.

Moving on from that and saying, "All right, do we have the right disease? It is PAH. We think that PAH drugs are going to help a patient with PAH." Now it gets into a conversation about whether or not someone is sick enough to need additional therapy and whether or not they're comfortable with those therapies. At the end of the day, every drug is part cure or part poison. It's going to have some things that help your heart, some things that help your breathing, some things that give you more energy and feel better if you're treating the right disease. Then it's going to have side effects, those things that make you feel crummy, that give you a headache, that make you nauseated, that give you diarrhea. Some patients are comfortable with their quality of life and their disease control, even if their numbers are not where we want them as a doctor and they're more willing to take on what we would call poor disease control than take on additional side effects. That is a delicate balance.

I would say my job as a physician is to paint as realistic of a picture as I can and say, "Your disease may not be under as good a control as we like. These are the options we have. These are the side effects." I have a lot of patients who go on these medications, feel better and find the side effects to be very tolerable. But at the end of the day, this is a decision that patients and their families and their doctor all need to work together to make because there's nothing worse than going on a therapy that you were unprepared for the side effects, you feel miserable, you stop, and then you have not really succeeded. That tolerance for side effects is another big part of the decision about therapy.

Then are you sick enough to need that therapy? We have a number of risk scores that people have developed over time. You can look at the REVEAL risk score, the ERS risk score and try and decide, does the disease warrant additional treatment? If your disease is under great control, you might not need additional treatment. So this is the big overarching bin of how we think about adding treatment, how really there's not a cookie cutter and how working together you can come to a place where everyone feels comfortable with the path they've chosen, whether that be more aggressive treatment or whether that be less aggressive treatment.

That said, taking a step back, that's what I do in clinic. That's the individual patient that I'm looking at. That's the conversation that I have a billion times a year. Taking a step back and looking at this as a researcher, we look back and we say, you know what? There are a lot of people that have PAH, that have severe PAH and aren't on all the drugs for PAH that might make them feel better. The question is, why? Why is it that that is the case? I think that that comes into a couple different reasons.

Some of them are the nuances of that patient-physician interaction than I just described. Patients that say, "Ah, you know what? I don't want another medication. I don't want more side effects." So some of them are "undertreated" with the disease, really thoughtful, well-reasoned decisions of why somebody might not choose to do something. I think that's very defensible. I think these personal decisions that you make with your physicians are incredibly important. I don't discount those in the least.

Sometimes though it's not that. Sometimes it's that a patient or a physician doesn't recognize how serious their disease is or how advanced it has gotten. So one reason for undertreatment may be that people aren't seeing their physicians enough or their physicians aren't ordering the tests; six-minute walk, BNP, echocardiograms, that really can kind of help identify how well the disease is controlled.

If you don't see how serious it is, it's very easy to fall into a mantra of, "Oh, I'm feeling fine," even if everyone around you knows that you're walking slower than you did last year, or you're walking less far than you did last year, or you're not really doing those activities that you wanted to do as much.

So one reason why people are under-treated is failure to recognize that the disease has progressed or acknowledge that the disease has progressed. I think that's a gap that we should be working to correct. Part of that is being in a group and seeing a provider that really knows to say, "You know what? We need to check all of these objective metrics. It's a pain, but there's probably going to be blood work with every visit. It's a pain, but there's probably going to be a walk test with every visit. It's a pain, but there's probably going to be an echo at least once or twice a year. It's a pain, but sometimes we need to repeat that right heart catheterization." Really those are making sure we don't miss the fact that the disease is progressing and might benefit from extra treatment.

Then I would say a final piece of really why people are undertreated may just be the fact that pulmonary hypertension as a field is still not where we want to be, but there have been a lot of developments that have happened over the last 10 to 20 years. So the reality is that there are a lot of physicians that don't even understand the full range of treatment options that are available in pulmonary hypertension. So really making sure that you're seeing a physician not only that knows what pulmonary hypertension is, that knows what pulmonary arterial hypertension is, but is also seeing enough patients with pulmonary arterial hypertension that they know all the treatments that are out there. They know the ones that are currently FDA approved. They know the ones that might be being studied. They know the ones that might be about to be approved, so that they can know to reach for those therapies.

So I think that is kind of that third leg of the stool right there. A lot of that really hinges on being tucked in with a group that knows pulmonary hypertension, being self-aware enough to know what your goals are. Do you want to walk further, have more energy, feel better? Are you willing to take on some side effects with that to get there? Really just kind of being open to the idea that the disease might progress and that you might have to check in and the approach might need to change and your meds might need to change. These are hard things to do, but important things to do.

That really kind of pulls it together for me. So when I think about treatment, it's really not a cookie cutter approach. I don't ever look at a patient and say, "Oh my goodness, why are they not on two drugs or three drugs?" I always start from the place of, is it the right disease? Is that disease under control? How does this patient feel about that balance between side effects and aggressiveness of treatment? I think that when you do that, you can't go wrong as long as you have a good knowledge and a good background of what treatments are available. I really think the only places where people go wrong are if either they or their physician don't recognize that the disease is getting worse or they or their physician don't know the range of options that might be available for treatment. Thank you so much for listening.

I am Peter Leary, and I am totally aware that my patients are rare and awesome.

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