the phaware® interview
Harrison “Hap” Farber, MD discusses PHenomenal Hope 2023.
Join renowned experts as well as rising young investigators and allied healthcare providers as they share original research.
This symposium offers a combination of oral presentations, expert panel discussions, and poster sessions in an environment that encourages collaboration and a deeper exploration of patient-centered research.
This event takes place December 15, 2023 Omni Boston Hotel at the Seaport For more info and to register, visit: www.PAH2023.com
Hi everybody. I’m Hap Farber. I am a pulmonary hypertension doctor at Tufts Medical Center in Boston. I’m also the President and the Chairman of the Board of Team Phenomenal Hope. In both of those capacities, I would love to invite everybody to come to Boston on December 15th for the first annual Team Phenomenal Hope PAH Research Day.
So what is it you ask? It’s going to be a day with research presentations, posters, and other presentations of topics that are not usually covered in most symposia or are covered in most registries. For example, we will talk about diversity and inclusion in registries and clinical trials. Not only that, but how do we get people who are not usually included in either registries or clinical trials into said registries and clinical trials? We need strategies to diversify our field, because if you look, all of the data so far, and this has actually been published of PAH registries and clinical trials are overwhelmingly Caucasian. There’s very little representation of any other ethnic groups, et cetera.
Other things are unmet needs for patients with pulmonary hypertension. This can be anything from an air conditioner to a way to get a ride to go to a transplant evaluation. These are not covered in most cases by any form of insurance. They’re certainly not covered in any symposia you will ever listen to.
Other things we can talk about, which are covered to some degree, but we’re going to delve into them, are substance abuse and PAH, especially with the meth epidemic on the West Coast and the cocaine epidemic on the East Coast and somewhere in between both of them. We’re now running into people in Boston who have both. It turns out, I was reading something very interesting, I believe it was in the New York Times, that currently in the United States, drug abuse and drug fatalities are the leading cause of death for people under the age of 45, which is frightening if you think about it.
We’re also going to talk about a hot topic at the moment that probably can’t be talked about enough is what is exactly a disease modifying agent in PAH? What does it mean? Do we have one? Are we going to have some on the horizon? If we do, how do they work and what do we expect from them?
Other things would be clinical trial designs and improving data quality. I mean, obviously we’re dealing with a disease entity in which the number of patients we can recruit is relatively small compared to other diseases. For example, you can do a cardiology trial and get 20,000 patients in a week. We can’t get 20,000 patients in the whole history of PAH. So how do we use these patients, especially in the age of presumably sotatercept, to find clinical trials and ways to design clinical trials that will be meaningful and that will add to our drugs or other treatments that will improve the outcome of pulmonary hypertension?
The other parts of this that are important is this symposia is open not only to physicians, but also to ancillary people who are interested in PAH, such as nurses, nurse practitioners, respiratory therapists, medical students, fellows, and patients. Especially the unmet need portion, we’d like to have patients involved.
Another sort of unique aspect of this symposium is the fact that each one of these subtopics will generate a white paper that hopefully will be published, or at least for sure will be kept as an archive, as a resource for everybody involved. Not just the people who were in the symposium, but anybody who wants to have access to that.
This symposium will take place on December 15th. It’s at the Omni Hotel in the Seaport of Boston, so it’s very close to the airport. It’s a great location. The other thing of importance, is it takes place the day after the Tufts Symposium, so you can go to both of them. They’re both in the same hotel.
If you go to sign up, there are multiple ways to sign up. One is you can go onto the Team Phenomenal Hope website, look under events, and it’ll be there. If you sign up for the Tufts Symposium, at the bottom of your registration, there’s a link to sign up for the Team Phenomenal Hope Symposium. Or you can go directly to www.PAH2023.com.