Nicholas Kolaitis, MD - phaware® interview 541

The Face of Addiction Isn’t Who You Think It Is

Once thought to be a West Coast issue, methamphetamine-associated pulmonary hypertension is now a nationwide and global crisis. Dr. Nicholas Kolaitis reveals how building trust with meth associated-PAH patients can lead to incredible turnarounds, including sobriety, trial participation, and successful transplant.

This Special Edition Episode Sponsored by: Johnson & Johnson

I am Nicholas Kolaitis. I am a pulmonologist at UC San Francisco. I primarily focus on pulmonary hypertension and lung transplantation. I have been interested in this space for quite a long time since I was in training as a resident at UCLA where I was training with Rajan Saggar and learned a little bit about the impact that pulmonary hypertension can have on patients. I'm pretty passionate about the way that we can actually improve lives for patients with pulmonary hypertension and the field of methamphetamine-associated pulmonary hypertension is something that is quite unique in the sense that it is very regional, historically.

In California, where I've done all of my training, we see a lot of methamphetamine-associated pulmonary hypertension. So, this has been something that has been ingrained in me, the care of these patients from the time that I was a medical student, because I've seen these patients from medical school, to residency, to fellowship, to being an attending and throughout my career. Seeing the impact that this highly addictive substance can have on people and seeing the way that it can cause pulmonary hypertension, but then also seeing the uplifting side of it when you can actually get people better and get people to stop and impact their lives for the better is pretty dramatic and pretty incredible.

With methamphetamine-associated pulmonary hypertension, the change in the field has been that it's becoming more prevalent and it's also moving. As I mentioned, I practice primarily in California and I've been in California my entire life. I did my medical school in UC San Diego, and then I was at UCLA for residency and UCSF for fellowship and had been exposed to it multiple times throughout my training. Then when I was in fellowship with Teresa De Marco at UCSF, we honed in on this idea that methamphetamine is really a western regional phenomenon.

We were able to use data from the Pulmonary Hypertension Association Registry to look at the distribution of methamphetamine-associated PH throughout the United States. We looked at this registry, which is this large 72-center registry throughout the US from patients that are seen at expert care centers. There's currently about 3,000 people in the registry. At the time we did our analysis, is was closer to about 1,500, but at the time that we did our analysis, we looked at the distribution of methamphetamine-associated pulmonary hypertension throughout the US, and we saw that 83% of all methamphetamine-associated pulmonary hypertension is in the Western US Census region.

This makes a lot of sense if you sort of think about where methamphetamine has historically come from. Initially, the history of it is that the Hells Angels, which is a motorcycle gang native to sort of Northern California trafficked methamphetamine throughout the Western US, and then as we started getting more addiction to methamphetamine as a population, a lot of meth has started coming from the southern border, and so it's been come up through the southern border, then it's trafficked mostly through the West Coast of the United States. That's why we've seen so much of it here.

In training, this is one of the things that I queued in with either, whether it was with Raj or with Teresa, seeing how much of their patient cohort is patients with methamphetamine-associated pulmonary hypertension. Then what I've seen over time, is that we're seeing not necessarily more of it in the Western US, because it's always been very prevalent here, but what we're seeing is that methamphetamine-associated pulmonary hypertension is becoming more common outside of the Western United States census region.

It's going south, it's going to the Midwest, and it's starting, occasionally, to make its way to the east. One of our colleagues who many of you probably know, Rich Channick at UCLA, he was in San Diego then he was in Boston and then he was back in Los Angeles. I was talking to him about this and he told me that when he was in San Diego, about half his practice was methamphetamine-associated pulmonary hypertension. Then he moves to Boston and he said he asked every single patient for the years and years that he was there and not a single one had methamphetamine-associated pulmonary hypertension. He moves back to Los Angeles, and there it is again, about half his practice is methamphetamine-associated pulmonary hypertension.

It is a very common thing where meth use is prevalent, but it is moving. If you look at diagnoses of methamphetamine-associated PH, whether it's in sort of the updated PHAR registry or whether it's through claims, you're actually seeing more claims in the south now than before. You're seeing more claims in the Midwest than before. Then outside of the United States, it's actually a problem. People don't really realize this because people think of this as really just, oh, this is a California or Arizona problem, but it's actually much bigger than that.

We have colleagues that are in Australia and they're commenting that meth use there is rampant and meth-associated PH there is rampant. This drug is trafficked typically through Myanmar, down into Oceania. Then, we're also seeing it in parts of Europe, as well. There's a whole population in Spain that's actually using a drug that they're calling Shabu that's similar, that's basically methamphetamines. You're seeing it over multiple countries throughout the world. The problem with this is that it's incredibly addictive and it's very easy to use and it's very, very cheap. The time from first use to compulsive behavior with methamphetamine is incredibly short, and that leads to the development of addiction quite easily, which can then lead to pulmonary hypertension.

I think that there's a couple of interesting aspects to it. One is the people who don't see it. There are a lot of people who don't see it in their practice. It's not that they're not looking for it, I don't think. Maybe, historically, that was the case because they didn't really know about it as much. But now, at least in the United States, people know that this is a problem, so they ask about it.

I have many colleagues from the eastern part of the United States that ask me, "What do you do? Do you screen all of your patients for meth? How do you find it?" For the most part, the people that are coming to see us in the clinic are people that have understood that there's a problem that's causing them to be short of breath, understood that there's a problem that's limiting their ability to live their life as full as they can and they want help and that's why they're coming to see us. For the most part, these patients are pretty open about it. I have not had a whole lot of patients where you ask them, "Could methamphetamine be causing your symptoms or how much methamphetamine do you use?" and then they lie about it. Sometimes, it might take a coaxing to get the information out, but for the most part, patients are very upfront about it.

I think there's a misconception there that I hear sometimes is that they're not going to tell me about it, so what should we do? Well, a lot of the patients will actually tell you about it because they're coming to you because they are seeking help. I think that's one thing. I think the other thing is that approaches to care for these patients is different. They're coming to us because they would need help and they're coming to us because they want to get better. They're not coming to the doctor because they don't want to be adherent to medication. They're not coming to the doctor because they are doing it for fun. They're coming because they realize something's wrong and they want to get better. Pairing with them has actually made a big difference in terms of getting them to buy into the therapy and buy into the treatment.

There is some conceptions out there that we shouldn't be treating these people because ongoing substance abuse can then lead to worsening outcomes. Certainly, if you look at it from an economic standpoint, you might say that this is bad to give expensive therapies to people that are actively using drugs that are causing the disease to get worse. I'll counter with that with this is somebody who, again, is coming to you because they need help. They're coming to you because there's a problem and they're coming to you because they want to get better. If you actually focus on the fact that they are there because they are seeking care and you give them the option for being heard, number one, not brushing their symptoms under the rug and options of therapy to maybe make them better, they'll buy into you as a provider and then you have your in to try to get them actually better.

I've had patients that we've seen that have been using for decades. They've been told by other people, "We're not going to take care of you because you keep using drugs." I've had patients that have been seen and they've been using for decades and they've been told, "You're going to die and there's nothing we can do about it." Then they come to see us and we tell them, "Look, I really don't care if you're using right now. What I want you to do is take our meds and here's what's wrong with you and here's why. It's because of the drugs and if you stop, we can get you better. We might not be able to fix everything, but we can get you a lot better. If you don't stop and you take the drugs, you're going to continue to get worse. I don't really care either way, but I'm going to take care of you regardless, because you're my patient and you're sitting in front of me and I want you to be better."

That has worked a number of times. Examples… Patients that live for decades with meth use came to me on active drug now on therapy, stop using because they believe that this is actually getting them better. All it really takes is one or two times that they actually stop for a couple weeks and then they realize, "Hey, I'm breathing a lot better," and then they start using again and they go, "Oh my gosh, actually this is making me so much worse." I've had patients that were former meth addicts that have been in randomized clinical trials and were amazing participants in these trials, coming to every clinic visit on time, coming to every randomized clinical trial visit on time. I've had patients that have been active users of methamphetamine when I met them with horrible pulmonary hypertension that go on parenteral therapy after we get them to stop using. They manage parenteral therapy just as well, if not better than many other patients.

I've had patients come and they're active meth users and we get them to stop and then we offer them therapy including parenteral, and for whatever reason they get worse and they're on maximum therapy including three, four drugs, and they continue to get worse and we offer them transplant and guess what? They do really well with transplant and they take excellent care of the organ after transplant. The option of looking somebody in the face and saying, "I'm not going to take care of you because you're using meth," is not an option in my mind. I think that we need to pair with patients to get them better, and the first step is to tell them that we are here for you and we're going to work with you to get you better, and these therapies can work. I think we should offer them to people to give them the chance to get better, because I've seen what it can do.

There is a conception with substance abuse disorders that this is a certain subset of society that is not representative of many people out there, but actually it's everyone. It's soccer moms, it's grandparents. It's being used as a stimulant during romantic encounters to sort of heighten the enjoyment of the romantic encounters. It's being used in many different populations throughout all society. Again, it's incredibly addictive, so it's used a few times and then it becomes compulsive. If you go back to the historical aspect of it, meth was given to our soldiers in the World War to keep them active for battle readiness, right? That's where it came from. It was used as weight loss therapy, so people might be using some of it related to that. It was used for students that are trying to study for tests, so it can be anybody. I think that the idea that it's people that are coming from a part of the society that's constantly using drugs is sort of a fallacy here. It is the functioning members that are going to work every day just as well as everybody else. I think that you can't say it's one size fits all in terms of who the users are.

For everybody that remembers their first few weeks and their first big job, it's always a bit nerve-racking. You walk in and you're hoping that everything's going to go well and you have a lot of imposter syndrome at the time. My first week, this young gentleman walks in, we did an echo on him and his heart was enormous. His right ventricle was three times the size of the left ventricle. I talked to him a little bit about methamphetamine use, and he told me that he had been using for decades. He was in his forties, and this was he'd been using since he was in high school. He was unable to walk across the room. He was syncopizing when he would walk.

We talked about meth use. Since he was actively using, we elected to put him on two-drug oral initially and brought him back in a month to see that he was actually taking the two-drug oral and then put him on three-drug oral initially and told him consistently, "You need to stop."  This was the approach with him, "If you stop using, I can actually use a lot more of the tools I have in my tool chest to get you better. If you keep using, these are basically the tools I have and you're on them. I'll keep you on these, but I can't do the other things." We don't give parenteral, in my practice, to active meth users. We will offer them three-drug oral, and now with the advent of a fourth pathway, we will offer them injectable therapy, but we don't offer continuous parenteral therapy just because of the risks of patients coming off of it and that causing sort of an acute RV failure.

He was on three-drug oral. This was at the time we did not have sotatercept approved at the time. So, now he's on three drugs and he comes back and he tells me he's cutting back, but he's still pretty short of breath. He's no longer syncopizing, but he's having difficulty still walking and doing his activities of daily living. His kids are seeing him wither away. We sit and we have this 30-minute conversation about methamphetamine use, and sometimes in these conversations it just clicks. The light bulb turns on, and you could just see it in his eyes that in that moment it clicked.

People that are trying to quit, they'll stop and they'll feel better and then they'll use again and then they'll feel worse. That was what was happening with him. He trusted me because I was the first person in his medical life that believed that there was something wrong with him and told him that his drug use was not something I cared about, but that I was going to get him better and we were going to work together. He believed me and it takes a lot from him. It's not me. I'm not the one that stopped. It's him and he stopped. Then, when he stopped and we showed a couple months of abstinence, we evaluated him for parenteral therapy and he was put on parenteral therapy. At the time that we put him on though his RV was still not functioning very well and he was having difficulty with the parenteral dosing and having difficulty with side effects, although we cranked it up, having difficulty still with his breathing being worse.

So, we evaluated him for lung transplant and during the evaluation for lung transplant, he started developing issues with fluid retention despite our best efforts with therapies. Clearly, his RV was already failing at the time that I met him. We weren't going to make a whole lot of progress there. He ends up finishing his work up, but still having ongoing right ventricular failure and goes to the hospital and ends up getting transplanted.

He's years out of his transplant, he's doing fantastic. He's running, spending time with his kids. I would call that a success, and this is somebody who if I had in that day when I saw him, brushed him off and said, "You're a meth user. This is from your meth use, come back when you've stopped using." I don't think he would've ever stopped because nobody bought into him as a person and nobody believed in him as a person, but here he is.

My name is Nicholas Kolaitis and I'm aware that my patients are rare.

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