PH Care for All

Breaking Barriers: Improving Health Care Access for Patients with Pulmonary Hypertension Webinar Presentation

An upcoming webinar presentation by Dr. Vinicio de Jesus Perez of Stanford University and Dr. Arunabh Talwar of Northwell Health System will provide an overview of PHA's exciting new PH Care for All initiative, which seeks to identify and address barriers to PH diagnosis and treatment for minority and low-income patients. Join us Weds., Nov. 30 at 3 p.m. EST/noon PST. Click here to register now.

PH Care for All

Progress 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, which is as many or more than for all but two of the roughly 7,000 rare diseases. Medical research and knowledge in the field is expanding rapidly.

Early data collected through PHA’s Envelope of Hope program are beginning to show that the Pulmonary Hypertension Association’s (PHA) Early Diagnosis Campaign is making headway in terms of the average time from onset of symptoms to point of diagnosis. However, a recently published study by Dr. Arunabh Talwar and colleagues indicates that underrepresented minorities and socioeconomically disadvantaged patients 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 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 mean of 2.8 years indicated by REVEAL, the concern is that many of these patients are missing the window for treatment and intervention entirely. As PHA continues to positively impact the average time to PH diagnosis, we must ensure that the additional needs of ethnic minorities and socioeconomically disadvantaged patients are met.

From this desire PH Care for All was born. The committee, consisting of 25 expert clinicians and academics committed to reaching these vulnerable patients, is led by Vinicio de Jesus Perez, MD, and Arunabh Talwar, MD. With this initiative, PHA continues to advocate for PH patients by educating healthcare providers and building a foundation for new health policies that will favor 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!

[1] Talwar A, Sahni S, Talwar A, Kohn N, Klinger, J. PC  2016. [Epub ahead of print]

PH Care for All Goals:

  1. Identify specific barriers unique to ethnic minorities and socioeconomically disadvantaged patients.
  2. Evaluate 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.
  3. Identify populations at greatest risk of receiving inappropriate and inadequate PH care.
  4. Advocate at the federal, state and local levels to ensure awareness of the needs of disadvantaged populations and drive legislative change in favor of improved care for these populations.
  5. Drive institutional change within medical practice to remove barriers and improve treatment access for these patients.

Medical Leadership:

Chair: Vinicio de Jesus Perez, MD, FCCP, FAHA – Stanford University
Co-Chair: Anunabh Talwar, MD, FCCP - Northwell Health System (New York)
Ian Adatia, MBChB, FRCP – University of Alberta (Canada)
Alvaro Aranda, MD – Hospital Auxilio Mutuo (Puerto Rico)
Richard Channick, MD – Massachusetts General Hospital
Laura D'Anna, DrPH – California State University, Long Beach
David de la Zerda, MD – University of Miami (Florida)
Karen Fagan, MD – University of South Alabama
Veronica Franco, MD – Ohio State University
Joseph Garcia, MD – University of Arizona
Gustavo Heresi-Davila, MD - The Cleveland Clinic
Adolfo Kaplan, MD – Knapp Medical Center, Lifecare Hospital of South Texas
Steven Kawut, MD, MS – University of Pennsylvania
Tim Lahm, MD – Indiana University
Roberto Machado, MD – University of Illinois at Chicago
Steve Mathai, MD, MHS - Johns Hopkins University
Vallerie McLaughlin, MD – University of Michigan
Matt Moreno - University of Kansas
Nancy Quesada-Rodriguez, MD – John H. Stroger, Jr. Hospital of Cook County (Illinois)
Erik Rodriguez, PhD, MPH - University of California, San Francisco
Josanna Rodriguez-Lopez, MD - Harvard University
Allison Rupp, LCSW – Stanford University
Sonu Sahni, MD - Northwell Health System (New York)
Mona Selej, MD - Actelion Pharmaceuticals US, Inc.
Melisa Wilson, ARNP, ACNP-BC – Orlando Regional Medical Center
Roham Zamanian, MD - Stanford University

To learn more about PH Care for All, contact:

Read the press release

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.