Hap Farber, MD - phaware® interview 511
Mar 11, 2025
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.
Learn more about pulmonary hypertension
trials at www.phaware.global/clinicaltrials.
Follow us on social @phaware Engage for a cure: www.phaware.global/donate #phaware
Share your story: info@phaware.com #phawareMD
@teamphhope