Victor Test, MD - phaware® interview 545

The Diagnosis Delay That’s Still Hurting Patients

Despite better tools and more awareness, people with PH are still being diagnosed too late. Dr. Victor Test opens up about the biggest barrier in PH today: getting diagnosed on time. Learn why shortness of breath is often dismissed and how both patients and doctors can work together to catch pulmonary hypertension earlier.

I'm Dr. Victor Test, the Chief of Pulmonary Medicine and Critical Care at Texas Tech University in Lubbock, Texas, and Director of the Pulmonary Vascular Program. I've been a pulmonary hypertension doctor since the year 2000. I began my journey as a pulmonary hypertension specialist as a fellow at the University of California at San Diego, where I was influenced by Dr. Lewis Rubin and Dr. Richard Channick, as well as Dr. William Auger and Dr. Peter Fedullo, and developed a love for pulmonary hypertension and pulmonary hypertension patients.

I'd like to take a little bit of time to tell you about the current state of pulmonary hypertension. We are in a very exciting time in pulmonary hypertension. From a therapeutic standpoint, we have a new medication that was recently approved that may alter our future methods and tactics in treating this complicated disease. We're hopeful that in the very near future, we'll have even more choices than we have today.

When I started in pulmonary hypertension, we had one medication. The conversation about that medication was long, but the time to choice was pretty short. You either got it or you did not, and fortunately that medicine was a life-saving medication.

Rapidly after I became a PH doctor, we'd had one medication after the other to their current state where we are now over 14 medicines to treat pulmonary hypertension. We're hopeful there'll be more. We hope that it will change the landscape in the future for PH patients forever.

My own personal crusade is that we will make the recognition and early treatment of the disease a continued priority because we continue to struggle with time to diagnosis and inadequate access to appropriate diagnosis and medications.

When I started in medicine, it was so long ago that, for example, one of the training facilities I worked at as a surgical trainee, we did four echocardiograms every Wednesday, and now echocardiogram is widely available.

It's difficult for me to understand why the time to diagnosis has changed for the negative. It seems like we should be getting better at that. I think physicians and healthcare people are more aware of the disease, but I think we all have run into the issue where patients can present with shortness of breath, and there's a lack of realization of the importance of that, both from a patient standpoint, where they tend to associate that with their weight or conditioning or asthma or some other diagnosis. Physicians, of course, do the same thing, so they tend to treat the much more common disorders. I think the biggest pitfall there is if you treat for a common disorder and the patient doesn't improve, you have to start looking for a different diagnosis. That's what I preach or at least try to spread the word about when I go out and speak to physicians about our disease of pulmonary hypertension.

When we started, we saw people with very advanced state of disease. We still see people with very advanced state of disease at the time of diagnosis. Now, we see a broader spectrum of patients, so whereas we would traditionally see people who had pulmonary arterial hypertension, now we see people with lung disease-associated pulmonary hypertension. Thus, the outcomes and the treatment that we have made a significant difference in decreasing the need and progression to transplant. But transplant is still a big part of what we do, particularly for people with advanced pulmonary hypertension and heart failure.

The access to transplant is even more complex than the access to pulmonary hypertension therapies, which is challenging. We're all looking anxiously for more information, particularly about pulmonary hypertension associated with lung disease and what are the best ways to diagnose and treat that disorder, which patients benefit, which patients do not. Do patients with pulmonary fibrosis respond the same as patients with obstructive lung disease? Because if we think about the diagnosis of Group 3 pulmonary hypertension, which is lung disease associated, we now have an approved therapy for interstitial lung disease. But what about those patients with obstructive lung disease, which are quite common. We're hoping that this (CHEST) meeting or in future meetings, we'll have clarity about how to approach those patients.

When I started in pulmonary hypertension, we really only used pulmonary hypertension therapies for patients with pulmonary arterial hypertension or Group 1 PH. In the last several years, with the evolution of our therapies and studies that have shown that we can help outcomes in patients with pulmonary fibrosis to have improved quality of life and exercise capacity with pulmonary hypertension therapies, that has changed everything about how we do things.

Over time, I've come to realize that patients are always more complicated than I thought they were when I was younger. Pulmonary hypertension patients and particularly pulmonary hypertension patients with lung disease are clearly in that category.

The pulmonary hypertension expert, the future, the physicians that we're training now, their outlook is going to be much broader than what mine was. Again, when I started, we had one therapy, it was for one class of pulmonary hypertension. We're now seeing what I hope is to be an explosion of new therapies, which give us all kinds of alternatives about how we manage other groups of pulmonary hypertension. The physician coming up and training today is far more facile, and bedside echocardiography, for example, is a way of diagnosing heart and lung disease, including pulmonary hypertension. I think that the future is bright for those physicians that are interested, intrigued, and dedicated to the treatment of pulmonary vascular disorders.

I think for our patients now, we do have more hope than we did. We went for a number of years where we had essentially the same medications. Things are changing rapidly, and that does give us hope that perhaps if we aren't getting closer to a cure necessarily, that we're getting closer to better and more patient-friendly therapies than we've had in the past. I believe a patient today, what I express to them when I see them is, while we would never choose for you to have pulmonary arterial hypertension, that we have more choices than we could ever have, and so there is hope for the future.

I'm Dr. Victor Test, and I'm aware that my patients are rare.

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