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About PH Care Centers2023-09-26T11:12:13-04:00

Pulmonary Hypertension Care Centers

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

Michigan Family Shares Daughter’s PH Journey

Cheryl Wegener felt grateful when her daughter’s former classmates chose PHA as a recipient of their senior class fundraiser. She thought the donation was a fitting tribute to Madison, who died during her freshman year of high school. Cheryl shares Madison’s story for PHA's spring fundraising campaign. She and her husband will present the check from the fundraiser at PHA 2022 International PH Conference and Scientific Sessions, Aug. 15-18 in Indianapolis.

Oxygen Access Bill Introduced in Senate

Thanks to PHA and other patient organizations, a bill to improve oxygen access has been introduced in Congress. The legislation would remove supplemental oxygen from Medicare’s competitive bidding process, among other reforms. The bill’s introduction in the Senate is just the first step,” says Katie Kroner, the Pulmonary Hypertension Association’s vice president of advocacy and patient engagement. “Advocate voices are essential to drive the new bill through the legislative process.”

2 Papers That Show How PHA Supports PH Research

New research papers that increase understanding of pulmonary hypertension are linked to PHA research initiatives. One paper was authored by Catherine Simpson of Johns Hopkins University, the recipient of a Pulmonary Hypertension Association research grant. The other, by Jacqueline DesJardin of University of California-San Francisco and colleagues, was based on data from the PHA Registry.

Start a PHA Support Group

Leading a support has more benefits than you might expect. “I wanted to help bring hope to PH patients, but what I learned is that they actually have given me hope,” says Monica Penaranda, leader of PHA’s Greater Los Angeles Support Group. “It’s a beautiful thing.” Learn how to start a PHA support group in your area.

Tampa Walk Raises $20K

The sixth annual Tampa O2breathe 5K and Walk was raised more than $20,000 for the Pulmonary Hypertension Association. The Feb. 18 event at Al Lopez Park in Tampa, Florida, memorialized Missy Stok Rizzo.

Insurers Must Apply Copay Assistance Toward Your Health Care Costs

Insurance companies must now count copay assistance toward deductibles and out-of-pocket costs. Health and Human Services recently stopped fighting a 2020 federal court ruling that prevents insurance companies from shifting health care costs on patients through copay accumulators. The Pulmonary Hypertension Association has worked for years to end copay accumulators, which allowed insurance companies to profit from copay assistance without reducing patients’ financial burdens.

Get in Rhythm with American Heart Month

For those with pulmonary hypertension, paying close attention to your cardiovascular health can be vital to longevity. Up to 60% of people with PH can attribute their condition to left heart disease, and nearly 10% of people diagnosed with congenital heart disease will develop PH. This month is a good time to make smart choices for your long-term health.

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