Hap Farber, MD - phaware® interview 511

Harrison "Hap" Farber, MD gives a recap of PHenomenal Hope 2024, emphasizing its patient-centered approach to pulmonary hypertension (PH) research. He highlights patient stories, particularly Eric Borstein's inspiring journey of recovery and advocacy, and underscores the importance of patient-provider collaboration. Additionally, he addresses challenges in PH care, such as inclusivity in clinical trials, the role of AI in medicine, and the complexities of treating patients with substance use disorders.

I’m Hap Farber. I do pulmonary hypertension at TUFTS Medical Center in Boston. This is the second edition of Team Phenomenal Hope Research Symposium. It’s different than other symposia in that it’s much more focused on patient needs, patient opinions, patient outcomes, and what we can do in the future to improve all of those rather than just basic science or clinical science that most PH symposia cover. For example, in this year, we had a patient come talk to us about what the journey’s like for a patient, which was just incredible. People just were picking their jaws up off the floor. It was just amazing. This patient, Eric Borstein, is like the perfect patient. He’s the perfect patient in part because he has the resources to be the perfect patient. Part of the problem is the bulk of our patients don’t have the resources to be the perfect patient.
 
Eric’s had a remarkable response to drugs, thank God. Secondly, he’s incredibly articulate about the journey he’s gone through. Thirdly, for those of us who do this a lot, he’s like the perfect PH patient that we never have, but it then sets a bar for us and our patients to try and reach that bar. As he said in his talk, he was a typical male. He disregarded or didn’t pay any attention to his symptoms, which went on for multiple years before he actually almost died because he’s a typical guy. You know, “It’ll go away.” He ended up initially diagnosed at such a severity that he ended up in an ICU, almost died from right heart failure, ended up on systemic therapy and had a remarkable response to it such that over time his right ventricle got better, he got better, and he was able to transition off onto oral meds.
 
In this whole time, he had come to the conclusion he was going to somehow beat this disease. Through his wife, they assembled basically a team. He’s got a sports psychologist, he’s got chefs, he’s got physical therapists, but he has the wherewithal to be able to do that. Then, he started walking. By walking, he could convince himself that he was getting better and that every step he took was another step towards beating this disease as he says. In addition, for him, it seemed like that walking mitigated the side effects from the drugs. He just kept walking farther and farther. The guy walks about 12 to 15 miles a day. He doesn’t just walk, he walks four miles an hour. I mean, he’s doing a mile in like 14, 15 minutes. I mean, he chugs right along there. There’s no facade here. He realizes that he was incredibly fortunate to have survived and to have the response he did. As he says when he talks, what he wants to do now is basically devote whatever time he thinks he has left to patient education, patient advocacy, stuff like that. 
 
I think in the past, one of the biggest problems is there’s a disconnect between patients and their providers. And a lot of the talks (at PHenomenal Hope 2024), showed you that there’s a disconnect. Not only showed you, but tried to investigate why there’s a disconnect. Part of going forward with PAH is in a way to make it a more perfect patient, you need the patient to understand why you do what you do, explain to them why you do what you do, and have them work with you as a team, which is something that we at TUFTS have done for years. You can’t treat the patient as a number. Despite the fact that in a lot of practices now because of the volumes or the constraints, they’re considered a covered life or a number or whatever you want to call, they’re not.
 
You have to think about, if I were that patient, what would I want to know? How would I want to be treated, and what input should or would I have as to what happens to me? Unfortunately, in a lot of situations, that’s not done. None of the three are done. It works better when all three aspects are done because then you get to this issue that you’re working as a team. Patients understand more of why you’re doing what you’re doing, what you’re doing, what you expect to happen, how you’re going to manage their side effects from the drugs, et cetera, et cetera. As I said at the beginning today, when we did the first one last year, I was scared that nobody was going to show up. Then this year, I looked out there, and I was like, “Oh, my God, look at how many people have actually shown up.”
 
We actually have to keep getting better and better and upping in our game. So far, at least the feedback that I’ve gotten over the course of the two symposia has been nothing but positive. Nobody said anything negative. Part of that is the fact that we touch on subjects that most PH symposiums don’t touch. We are dedicated to patients and the advocacy and all that stuff. It’s interesting now though, since we started doing it, like at the World Symposium this year, they actually had patient input for the first time ever in their 25 years of doing it. So this first time they’ve actually asked patients to give their opinions and stuff like that. I think a lot of it goes to the idea that despite what we believe or some of us believe, patients actually want to be part of this team and want to feel like their opinion and/or their thoughts of what happens to them is actually valued, which it should be.
 
My nurse practitioner and my fellow could tell you we go through everything with the patients, and then we go, “So what do you think?” And see what they say. Then, I’ll go, “Well, it’s okay. We can do that. But you might want to expand that horizon a little.” That’s important. The patient wants to be included. No matter what docs think, patients don’t want to be talked to. They want to be included in the discussion. It’s not happening uniformly. Some of the same problems that we had 10 years ago, we still have. 
 
You have to realize that this symposium is also very different than others in that this is driven by the abstracts that are submitted, not by my want as to who, whatever. So depending on whoever’s writing the abstracts puts in, then we decide. The one topic which I put in there because I knew it would be above everybody but within five years clearly will not be was the discussion of bioinformatics and AI. Like it or not, that’s where not only the world, but the world of medicine is headed. You can’t stop it. It’s like a tsunami. Now, the question really is going to be, how do you harness it for good and not bad? There’s going to come a point where depending on how good these machines are, they’re going to know more than we do. You have to understand that as much as you may or may not like AI and bioinformatics and all this stuff, you’re not stopping it. There’s too much momentum and too much money involved in it. 
 
In simplistic terms, medicine has tried to simplify things. You have a disease, you think you have the cause or the etiology, and you make a drug to treat it. Well, PAH is not that simple. It’s multiple different pathways that probably lead to the same node that then from that node pathology develops. The question really is, what’s upstream from that node? Are there pathways, molecules, enzymes, whatever, that you could exploit either with currently available drugs that you reposition for this or new drugs that target these pathways? That’s what it’s trying to tell you. 
 
Or the other possibility is that there’s so much overlap that you never realize between this and disease Y, that you can take the things you’ve learned from disease Y and apply it to PAH. The closest analogies are, if you look now at the neoplastic drugs, the cancer drugs, those guys are 10, 15 years ahead of us easily. But they do have the advantage of they have tissue. They can sequence tissue. You get a chunk of tumor, you sequence it, you find out where the abnormalities are, then you make a drug. 
 
When you see all those ads on TV, that’s where those things came from. They’ve got an antibody that just blasts that mutation. That’s good because it’s more specific, it reduces side effects, it decreases off-target effects and stuff like that. We don’t have that yet, but we will if they keep going like this. So since we don’t have tissue, we have to make our own tissue by computational biology and with computers and AI and all this, figure out if we had this chunk of tissue, what it would look like. 
 
One of the areas that we focus on now on both years we’ve done this as unmet needs is the patient who does meth. The biggest problem with meth, aside from the fact that their pulmonary hypertension tends to be pretty severe by the time they’re actually diagnosed, is the fact that you not only have to deal with the pulmonary hypertension, but you have to deal with addiction and other social issues that come along with addiction and things like that. Unless you can navigate those waters at the same time, it’s hard. It’s especially hard in a way because in the U.S, not so much in Massachusetts, but in the U.S, the access to mental health care, it’s just pathetic. It’s been cut and cut and cut and cut such that to get somebody into a mental health program with some expediency is really difficult. It probably depends on where you are. 
 
It’s clear that out in the West, meth is a huge issue. However, there’s meth in New England, Western Mass, Northern Vermont, Northern New Hampshire, it’s there. Part of the problem is I think they’re used to looking for it. People in the Northeast are not so used to looking for it because we don’t believe that it’s here, but it is. We’re more used to looking for cocaine whereas in the West, they have almost no cocaine. Everybody’s doing meth. 
 
In the West, if you don’t think of meth and you don’t screen your patients for meth, or God forbid, you don’t even ask them about it, you’re never going to find it. In New England, for example, I think fewer physicians actually ask about meth or actually do tox screens for meth or stuff like that. We ask every patient, every new patient about meth. We do. It’s surprising how if you ask, you’re surprised. All of a sudden this person goes, and you’re like, “Whoa, okay.” I always use this example. I saw this woman with idiopathic PH, was sent down from New Hampshire, suburban housewife, two kids, picket fence, dog, station wagon. So we’re in there, and I go through my spiel and go, “So any history of meth?” She goes, “Yeah, I used to be a total meth head.” Her husband obviously knew nothing about this. He’s looking at her like, “Say, what?” I said to my nurse practitioner at the time, would you love to be a fly on the window on that car ride on the way home? 
 
Part of the issue that’s been raised not only in PAH but in other disease states about clinical trials, clinical trial designs, registries, are the fact that they’re not inclusive. That presents several problems. One is since drugs are approved based on clinical trials, if the clinical trials are not inclusive, you then don’t know if the drug works across the board or did you just happen to hit an ethnic population in whom it works? There are multiple reasons why clinical trials and stuff have not been inclusive. We went through a lot of them. Some of it has to do with physician bias. Some of it has to do with patient bias. Some of it has to do with the economics of clinical trials. A lot of patients who work can’t just take the day off and come in and do their clinical trial visit, even if you do buy them lunch or pay for their parking, because their boss doesn’t understand. They’re risking their job. Then, there are the people who have tremendous suspicion about the medical community based on previous clinical trials to say the least unethical. 
 
A lot of these all lead up to the fact that it makes it difficult in some places to recruit minorities into clinical trials so that you get those data that you actually need to know. It’s clear now that some of the pharma companies are actually trying to, in their trials, which they never did before, report actually the ethnicity of the people who are being or have enrolled in the trials in a way to hopefully mitigate some of these issues. But, again, we still have a long way to go. 
 
Some of the stuff we’ve covered a couple years in a row, because we want to see if there’s been advances in a year. Some of them, yes. A lot of them, unfortunately, there hasn’t been any. I think should we do this again? Yes, we probably will. Most of the people who’ve at least given us feedback, enjoy it, think it’s worthwhile. Let’s think ahead to Team PAH 2025. We’ll put out the topics, but it’s up to the people who are out there to send in abstracts to fill those topics. Then, we decide who we’re going to pick, what the order, stuff like that, which I think that’s clearly unique. There’s no other symposium that does it this way. Other symposiums, which I either do or organize or whatever, you pick a topic, you go, “Okay, we’ll invite Joe Blow,” and whatever. This is very different. We’re really dependent on the abstracts that people send in. We make that pretty clear. I think I said that by closing arguments. If you don’t like the topics, blame yourself because you send in the abstracts. 
 
I’m Hap Farber. I’m aware my patients are rare.

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