Pathlight Summer 2016 - (Page 25)

HEALTH MATTERS RESEARCH CORNER PH Care for All Addressing U.S. Healthcare Disparities By Arunabh Talwar, M.D., FCC; Sonu Sahni, M.D.; Edmund J. Miller, Ph.D., Department of Pulmonary, Critical Care and Sleep Medicine, Northwell Health System, New Hyde Park, N.Y. P rogress in treatment of pulmonary hypertension (PH) and the organization of the PH community has been substantial over the past 25 years. The number of PH treatments has grown from zero to 14. Medical research and knowledge in the field is expanding rapidly. Despite this progress, a recently published study by Dr. Arunabh Talwar and colleagues indicates that patients of low socioeconomic status (SES) are impacted disproportionately by the most common barriers to PH diagnosis, as well as by a number of additional barriers unique to these populations.1 These barriers not only adversely affect making the PH diagnosis itself, but also impact patients' ability to receive treatment once the diagnosis has been made. With preliminary data indicating that these patients experience diagnostic delays beyond the average of 2.8 years indicated by the REVEAL RegistryTM, the concern is that many of these patients are missing the window for treatment and intervention entirely. MORE ABOUT THE STUDY... At the advanced lung disease center at Northwell Health System doctors began to notice trends among PAH patients which led to the question, "Does socioeconomic status affect PAH disease severity at first presentation?" In other words, they wondered if PH patients of lower income were typically diagnosed even later than other PH patients. This research led the doctors to take the approach of using zip code-derived median household income to help standardize SES determination, a methodology that has been validated by the Agency for Healthcare Research and Quality ( As for PAH disease severity, the physicians used subjective measurements, taking into account how much the disease affected patients' daily life and their overall physical functional abilities. The study included 116 consecutive patients with PAH. Findings suggested that patients with low SES, as adjudicated by zip code-based median household income, have more advanced disease at time of diagnosis than patients with higher SES. A lower SES has been associated with worse outcomes in PAH, and the findings from the study suggest that this may be due to more advanced disease at the time of initial diagnosis. This discovery has led the researchers to believe that despite there being sufficient knowledge of this disease, many patients are falling victim to the healthcare disparity and attendant barriers to care that come with a lower SES. Interestingly, although this particular study was focused on pulmonary arterial hypertension, or WHO group 1 PH, their research ultimately showed that SES and delay in diagnosis is present across all five pulmonary hypertension WHO groups. Above all, the study further reinforces the hypothesis that, despite best efforts, many patients still fall through the cracks. Inspired by this study, PHA's newest program, PH Care for All was born of our desire to ensure that the needs of these underserved patient groups are being met. The committee, consisting of 25 expert clinicians and academics committed to reaching these vulnerable patients, is led by Vinicio de Jesus Perez, MD, of Stanford University, and Arunabh Talwar, MD, of Northwell Health System. With this initiative, PHA continues to advocate for PH patients by educating healthcare providers and building a foundation for new health policies that will support this patient population. Our ultimate goal is to ensure that all PH patients receive the same level of care regardless of ethnicity, socioeconomic status or race. In short, we'd like to ensure PH care for all! One of the most exciting things about the PH Care for All program is that it has begun to inspire new research in the field of pulmonary hypertension which, over the next several years, will have investigators taking a closer look at: 1. 2. 3. Specific barriers unique to ethnic minorities and socioeconomically disadvantaged patients. The impact of social and economic disparities within the United States, focusing on how these factors may impede access to PH care and lead to delays in diagnosis. The populations at greatest risk of receiving inappropriate and inadequate PH care for social reasons, including income level, race, and ethnicity. Pathlight will continue to report on progress that results from PH Care for All. For more information, and updates about PH Care for All, please visit 1 Talwar A, Sahni S, Talwar A, Kohn N, Klinger, J. PC 2016. [Epub ahead of print] WWW.PHASSOCIATION.ORG 25 http://WWW.PHASSOCIATION.ORG

Table of Contents for the Digital Edition of Pathlight Summer 2016

Message from the Chair
Message from the SLC Chair
Quick Takes
PHenomenal Lives
Family PHocus
A Day in the Life of a PH Physician
Research Corner
GO PHAR Research
Ask the Expert: Post-PE Monitoring
End-of-Life Conversations: Tough Questions & Important Answers
Lantos Highlight
Conference & Leadership Changes
Chapter News
Advocacy PHact or PHiction? Test Your Knowledge of PH Advocacy
Calendar of Events
Question of the Quarter:

Pathlight Summer 2016