fbpx
About PH Care Centers2020-10-19T21:41:43-04:00

The Pulmonary Hypertension Association’s Scientific Leadership Council, 28 global leaders in the field of pulmonary hypertension, have spearheaded the PHA-Accredited PH Care Centers (PHCC) initiative to establish a program for accreditation of centers with special expertise in pulmonary hypertension (PH), particularly pulmonary arterial hypertension (PAH), to raise the overall quality of care and outcomes in patients with this life-threatening disease.

Why Accreditation is Needed

Once considered rapidly fatal, PAH can now be treated with many medications, all developed in just the past two decades. Despite medical advances, the median time from onset of symptoms to PAH diagnosis is still 1.1 years, and many patients will see three or more different physicians over this period before they are properly diagnosed. Since early 2011, PHA’s Scientific Leadership Council has developed the PHCC initiative to assure outstanding care in pulmonary hypertension.

More Information

Doctor with patient

The PHA-Accredited PH Care Centers (PHCC) program is an initiative of PHA’s Scientific Leadership Council to accredit centers in the U.S. in order to raise the level of care for individuals with pulmonary hypertension (PH). Accreditation is based on a center’s overall commitment to PH patients, breadth of involved health care professionals and scope of services provided.

How to Find a PH Specialist In the PHCC Network

PHA has created a map to assist in locating a PHCC near you.

Map of accredited PH care centers

PH specialists in the PHCC network also can be found in our Doctors Who Treat PH directory. They will be designated as part of an accredited PH program in your search.

How PH Care Centers Are Expected to Improve Your Medical Care

  • Patients are better informed about comprehensive PH care
  • Patients have improved access to Centers with expertise in PH
  • Patients experience less time between symptom onset and diagnosis
  • A medical community better informed about standards of PH care
  • Therapies are appropriately used to improve long-term outcomes
  • Increased opportunities for collaboration between Centers for clinical care and PH research

The Two Types of Centers

Two types of centers are accredited: Centers of Comprehensive Care (CCC) and Regional Clinical Programs (RCP). Both accredited CCCs and RCPs will have demonstrated a commitment to providing expert-level care based on pulmonary arterial hypertension (PAH) consensus guidelines.

PHA Centers of Comprehensive Care

Centers of Comprehensive Care

A PHA-Accredited Center of Comprehensive Care is a highly organized, full-time PH Center that proficiently evaluates PH patients based on published evidence-based guidelines and also provides expert treatment of pulmonary arterial hypertension (PAH) patients with all of the FDA-approved therapies. CCCs also make important contributions to PH research and education.

PHA Regional Clinical Program

Regional Clinical Programs

A PHA-Accredited Regional Clinical Program is a regional PH Center that proficiently evaluates PH patients based on published evidence-based guidelines and also provides expert treatment of PAH patients with all non-parenteral therapies. An RCP must collaborate with its regional CCCs by referring patients that may benefit from opportunities unavailable at the RCP, including the initiation of advanced parenteral therapies and participation in clinical research protocols.

Developing and Implementing the PHCC Program

In September 2011, members of the PHA Board of Trustees, the PHA Scientific Leadership Council, and other key stakeholders in the PH community approved the PHCC initiative in concept. A steering committee and task forces were organized and staffed to address accreditation criteria, program implementation, registry development, communication to key stakeholders and financial sustainability. The members below provided valuable contributions, which include: researching, accumulating and documenting information, developing logic models, defining action steps, building financial projections and validating the program content.

Murali Chakinala, MD (PHCC Chair) Washington University in Saint Louis
Rino Aldrighetti PHA
Richard Channick, MD Harvard Medical School
C. Gregory Elliott, MD University of Utah
Serpil Erzurum, MD The Cleveland Clinic Foundation
Karen Fagan, MD University of South Alabama
Bob Gray PHA
Michael Patrick Gray, MPH PHA
Carl Hicks PHA
Wendy Hill, RN, MSN VA Greater LA Healthcare System
Steven Kawut, MD, MS (Patient Registry Task Force Chair) University of Pennsylvania
Vallerie McLaughlin, MD University of Michigan
Stephen Mathai, MD, MHS Johns Hopkins University
Olivia Onyeador, MHA PHA
Ron Oudiz, MD (Criteria Task Force Chair) Harbor UCLA Medical Center
Abby Poms, RRT, RCP (Implementation Task Force Co-Chair) Duke University
Jeffrey Sager, MD, MSCE Cottage Hospital
Robert Schilz, DO, PhD Case Western Reserve University
Traci Stewart, RN, MSN University of Iowa
Darren Taichman, MD University of Pennsylvania
Victor Tapson, MD Cedars-Sinai
Corey Ventetuolo, MD, MS Brown University
Joel Wirth, MD (Implementation Task Force Co-Chair) Maine Medical Center
Roham Zamanian, MD (Funding Task Force Chair) Stanford University

PHCC Initiative Mission Statement

The purpose of the PHA-Accredited Pulmonary Hypertension Care Centers (PHCC) initiative is to establish a program of accredited centers with expertise in pulmonary hypertension that aspires to improve overall quality of care and ultimately improve outcomes of patients with pulmonary hypertension, particularly pulmonary arterial hypertension, a rare and life-threatening group of diseases.

Why the Need for Accreditation?

Despite the availability and success of PAH-targeted therapeutic options over the past two decades, there are still shortcomings with the diagnosis and management of PAH. One recent study observed that expert recommended diagnostic algorithms were not being followed to completion in up to 94% of PAH patients, and nearly 60% of PAH referrals to expert centers already on therapy were on so contrary to published guidelines. In addition, despite the available medical therapies, long-term outcomes are still not optimal as many patients still die from PH, require transplantation or require hospitalization.

PH Care Centers: What You Need to Know

Two types of centers are be accredited: Centers of Comprehensive Care (CCC) and Regional Clinical Programs (RCP). Please note that applications for Pediatric Regional Clinical Programs are not currently being accepted. Learn more about the PH Care Centers initiative:

PHCC News and Research

San Diego Workshop Provides Opportunities To Connect, Learn and Share

More than over 80 people attended the Pulmonary Hypertension Association’s recent education workshop. PHA Connects: PH Community Workshop addressed medication side effects, chronic thromboembolic pulmonary hypertension and blood abnormalities associated with PH, among other topics. The free, daylong event, formerly known as PHA On the Road, also included support group meetings.

Discover Tips to Care for Your Child with PH

Join our panel of experts at 2 p.m. EDT Thursday, June 22 as they share their experiences treating and caring for children with PH. Panelists include health care professionals Rachel Sullivan, M.D., and Melissa Magness, M.S.N., APRN, CNP-AC, and parents Jayna Wall and Jeff Harpp. Discover practical advice related to school, activities, health care and more.

United to Cure PH: World PH Day 2023

The pulmonary hypertension community observed World PH Day by sharing social media posts about symptoms, related conditions and facts about PH. Additionally, the Pulmonary Hypertension Association observed World PH Day with two in-person events May 6 and will continue its global awareness efforts throughout May.

What You Need to Know About Medicaid Changes

Learn how to maintain insurance coverage now that the COVID-19 public health emergency is over. Join the Pulmonary Hypertension Association (PHA) at 2 p.m. EDT, Wednesday, May 31, for a free webinar on Medicaid disenrollment. Jaeger Spratt, PHA’s advocacy and treatment access manager, will explain how states are removing beneficiaries from Medicaid plans and how you can navigate the system.

Support Group Forms Book Club

The New York City-Manhattan Support Group recently launched a book club to provide new opportunities for people with pulmonary hypertension (PH) to engage online. Leader Alicia Kubes started the support group in 2018 and has been expanding its focus since the pandemic began. The online group aims to discuss books through the lens of living with PH; patients throughout the U.S. are welcome to attend the June 9 meeting.

PHA Updates its COVID-19 Policy

The Pulmonary Hypertension Association (PHA) recently updated its COVID-19 policy to reflect the Centers for Disease Control and Prevention guidelines. The policy focuses on individual responsibility at PHA events to use proven methods to reduce and prevent transmission.

Connect with PHA at ATS 2023

Join the Pulmonary Hypertension Association (PHA) at the American Thoracic Society International Conference May 19-24 in Washington, D.C. Meet our staff in person, and learn more about the exciting things happening at PHA. We look forward to connecting with health care professionals to share our passion for improving the lives of those affected by pulmonary hypertension. Visit us at Booth 916 when the exhibit hall is open.

CEO Update: Join Us for World PH Day 2023

Please join the Pulmonary Hypertension Association and more than 80 other patient organizations next week in observing World PH Day. Since 2012, the global pulmonary hypertension (PH) community has come together May 5 to bring attention to this rare lung disease. Whether you have PH, care for someone with PH or are a health care professional, please help us mark this important day.

What to Do When You’re Running Out of Medication

Like many in the pulmonary hypertension community, you know the stress of waiting for prescription refills and worrying whether they will arrive in time. Although specialty pharmacies try to avoid medication disruptions, errors sometimes happen. The Pulmonary Hypertension Association (PHA) asked several specialty pharmacies about what to do when you’re at risk of missing a dose or need an early refill. Visit the new resource page in PHA’s Insurance Guide.

Title