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I'm Aware That I'm Rare: the phaware® podcast

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Vinicio A. de Jesus Perez, MD - phaware® interview 165

Jun 22, 2018

In this episode, Dr. Perez discusses health inequality and ways to improve access of care for patients with disadvantageous ethnic backgrounds. Vinicio de Jesus Perez, MD is Assistant Professor of Medicine (Pulmonary and Critical Care Medicine) at the Stanford Adult PH Clinic where he trains fellows pursuing careers in PH and IPF. 

My name is Vinicio de Jesus Perez. I am an assistant professor in the division of pulmonary critical medicine at Stanford University. I'm also a staff physician in the adult pulmonary hypertension clinic also at Stanford.

Health inequality is a big topic in the current environment of our health system. What that means is that there is a segment of the population in the United States who's not receiving the same level of care as others. What does that mean? It means that there are patients from vulnerable populations, and this can be lower social economic status. Patients who are for example immigrants, illegal immigrants. These patients who don't speak English, they may actually be reaching health care centers to receive care for chronic conditions like diabetes, stroke, heart disease. But when you compare the outcomes of these patients, they have a much worse clinical outcome compared to patients who are on a different bracket on social economic or income.

This is a big problem, because what this means is that our current health care system is not treating everybody the same, and there are some people who are actually being relegated to the side lines, and they're really getting the quality of care that they need.

Let's dig into pulmonary hypertension. Now, pulmonary hypertension is a rare disorder. It's not cancer, it's not coronary artery disease. It's a rare disorder. That's a given. But it is a disorder that can be treated. I think out of the many rare diseases that are there, I think we should feel privileged that we can offer many therapies to this patient population. If you can do this, then we should be able to be aggressive about helping patients who are affected with this devastating disease.

Our concern comes from some studies that have been published along with a lot of my own personal experience seeing patients here in clinic. I'm a native Spanish speaker. I'm originally from Puerto Rico. In our PH clinic, I am the only one of the pulmonary hypertension attendings who can speak the native language, so I end up seeing a lot of Hispanic patients. A lot of these patients, I can tell you are from Mexico. Some of them have been living in the States for many years. They don't speak English. Some of them are not legal. They come to our center with very severe disease, very little understanding. They've been in the system, and they've been told that they have asthma, they've been told that they're anxious, they've been given anti-depressants. Ultimately, somebody does an echo and they find PH. At the time, they come to me and if this had been somebody else with better access to care, better insurance coverage, they will have been able to come sooner. That's one concern.

The other problem comes when we have to prescribe the medication, and then we have to work with the medical insurance. These patients don't necessarily come with medical insurance. We have to work with Medi-Cal. Insurance is a problem, receiving support from society, from the medical establishment so that they can actually come routinely that they can receive education. Very limited. I think Stanford in many ways has great resources, and I'm actually very privileged to work in this place because we recognize this to be a challenge.

When it came to thinking, "Well, what can we do to sort of improve the conditions of healthcare delivery to these patients?" The first thing we did was to look to the literature and see what's been published. We were quite disappointed when we saw that there had not been much being published in the field. There was some papers by Dr. Steve Kawut for example, and some other small studies that really didn't give a whole vision of what this is.

I met Dr. Arunabh Talwar from the East Coast. What Dr. Talwar had done is he had actually identified socioeconomic status as a predictor for patients that will come. They will be at the worst functional status if their social economic status was low. Obviously, the worst functional status means that they're at a greater risk of complications, and even dying from pulmonary hypertension. He and I decided to put together a group that is devoted to finding ways to address the problem of health disparities in PH, raise awareness, conduct research. The first priority was we needed to put a research statement out there. We need to put it in a high profile journal, so that the community out there knows that this is a problem that needs to be addressed. We need solutions, we need research, but people need to know.

During the past two years, we worked on this statement. 15 colleagues from different centers across the United States gathered together at the American Thoracic Society for a face-to-face meeting where every group was assigned a topic. Topics ranging from genetic determinants in minorities for pulmonary hypertension, socioeconomic status, healthcare inequality. In other words, how much discrimination from the healthcare side may be playing a role. How patient perceptions may influence healthcare. In other words, do patients come to us already with a sense of distrust? What may affect their perception of what we're trying to do? And ultimately, healthcare policy, like if we need to work with the government to change healthcare in favor, like health policy.

I think this is now going to become part of the discussion that we as a professional community need to engage upon. I also want to celebrate the fact that before our statement came in, there's been some studies published by several groups in the literature looking at the impact of racial, ethnic profile, socioeconomic status in pulmonary hypertension.

I think we have hit the ground running. There's a lot of work to be done. But, I think at this point in time, I will settle with the fact that awareness needs to be had. And this needs to be studied so that we can intervene and hopefully improve the quality of care for this vulnerable population which includes African-Americans, Hispanics, LGBT, as well as Native Americans, Pacific Islanders, et cetera.

My name is Vinicio de Jesus Perez, and I am aware that I'm rare.

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