Pathlight Summer 2016 - (Page 25)
PH Care for All Addressing U.S.
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.
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
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
(www.ahrq.gov). 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:
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 www.PHAssociation.org/PH-Care-for-All.
Talwar A, Sahni S, Talwar A, Kohn N, Klinger, J. PC 2016.
[Epub ahead of print]
Table of Contents for the Digital Edition of Pathlight Summer 2016
Message from the Chair
Message from the SLC Chair
A Day in the Life of a PH Physician
GO PHAR Research
Ask the Expert: Post-PE Monitoring
End-of-Life Conversations: Tough Questions & Important Answers
Conference & Leadership Changes
Advocacy PHact or PHiction? Test Your Knowledge of PH Advocacy
Calendar of Events
Question of the Quarter:
Pathlight Summer 2016