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
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.
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.
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:
- Application Process
- Accreditation Criteria
- Frequently Asked Questions
- Informational Webinars
- PHCC Medical Leadership
- Get Involved
PHCC News and Research
Advisory: Reproductive Health and Pulmonary Hypertension
Pregnancy is considered high risk for people with pulmonary hypertension because their heart and lungs can’t easily adjust to the demands of pregnancy and childbirth.
New PAH Treatments Increase Patient Options
Pulmonary hypertension treatment has come a long way since PHA’s founding in 1991. In the past week, the Food and Drug Administration approved the 15th and 16th treatments for pulmonary arterial hypertension. Read about the new treatments in PHA's CEO Update.
Marla O (she/her)
Marla was diagnosed with PH in 2008 and works full-time. She lives in the US Southeast.
Karen D (she/her)
Karen has been a PH patient since 2019 and lives in the US Southeast.
Jane N (she/her)
Jane is a caregiver to her child who was diagnosed with PH in 2010. She lives in the US Southeast.
Cathy C (she/her)
Cathy was diagnosed with PH in 2010 and lives in the US West. Cathy is retired from work.
Allison D (she/her)
Allison was diagnosed with PH when she was a senior in high school in 2015.
Doug T (he/him)
Doug has been a PH patient since 2003. He lives in the US Southeast and is retired.
PHA 2024 Registration Opens March 29
Registration opens Friday, March 29, for PHA 2024 International PH Conference and Scientific Sessions. Take advantage of early registration discounts for the Aug. 15-18 event in Indianapolis. Make sure your Pulmonary Hypertension Association membership is up to date to receive the discounted member rate and apply for scholarships to further reduce conference costs. Scholarships will be available on a first-come, first-served basis until June 15.
Hear Coach Bear Recount His PH Comeback at Houston Workshop
Former basketball coach Barron "Coach Bear" Honea knows the importance of resilience on and off the court. But his most formidable challenge didn’t come from a rival team – it came in the form of pulmonary arterial hypertension. Honea will share his PH comeback at the PHA Connects: PH Community Workshop in Houston. Join us April 6 for his keynote speech and other invaluable sessions.
Discover These Must-Read Stories in New Pathlight
The most recent issue of Pathlight explores how access to PH care has grown by focusing on PHA’s 10-year-old accreditation program. Our quarterly member magazine also looks ahead at PHA 2024, including tips for traveling with oxygen, eight fun reasons to visit Indianapolis and insight from past attendees. Our cover story takes us behind the scenes of performing with PH with Steve Smith from Colorado.
PH Professionals: Help Us Create a New Advanced Practice Nursing Certificate
The Pulmonary Hypertension Association is developing a certificate program to support advanced practice providers and nurses who work with PH patients. Help shape this educational program by sharing your educational requirements and preferences. Your input will guide us in developing tailored learning opportunities to support your professional growth and advancement. Complete this brief survey by April 1.
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.
PHA 2024 Scientific Sessions You Don’t Want to Miss
Mark your calendars for PHA 2024 International PH Conference and Scientific Sessions, Aug. 15-18 in Indianapolis. Themed “Stronger Together,” the conference is a large gathering of health care professionals, patients and caregivers.
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.
Don’t Snooze on This: March 10-16 is Sleep Awareness Week
This week, the Pulmonary Hypertension Association partners with the National Sleep Foundation and Project Sleep to spread sleep apnea awareness. Learn more about sleep apnea and its connection to PH.
Accredited PHCCs have the opportunity to enroll PH patients into the Pulmonary Hypertension Association Registry (PHAR). A patient registry is an organized system that collects data to evaluate certain outcomes for a population of people with a medical condition (like PH) and is a useful tool for learning more about rare diseases.