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.
Try a Healthful Holiday Recipe
As Pulmonary Hypertension Awareness Month continues, help us raise awareness by downloading and sharing today’s PH Awareness Month Calendar activity. Try a new recipe or share your favorite tips to help you eat healthfully during the holidays. A low-sodium diet can help people prevent fluid retention or edema.
PH Professionals: Submit Your Proposals for 2023 PHPN Symposium
The Pulmonary Hypertension Association is accepting abstract and speaker proposals for the 2023 PH Professional Network Symposium. The event is set for Sept. 28-30, 2023, in Arlington, Virginia. Submit proposals by Jan. 16, 2023.
Hundreds Gather at California Walks to Raise Awareness
Health care professionals, patients, families, caregivers and industry supporters celebrated the start of Pulmonary Hypertension Awareness Month Nov. 5 at California O2breathe walks in Fresno and Monrovia. More than 225 attendees participated in the Central California O2breathe Walk at the UCSF-Fresno Community Regional Medical Center. The ninth annual Monrovia O2breathe PHun Walk attracted more than 200 attendees.
How a New Jersey Support Group Leader Honors Her Late Son
Bonnie Patricelli memorializes her son Ryan Juntti through her volunteer work for the Pulmonary Hypertension Association (PHA). She and Ryan revived PHA’s South Jersey Support Group in 2008, and she continues to co-lead the group since Ryan’s 2015 death. Bonnie’s story appears in the fall issue of Pathlight, PHA’s quarterly member magazine.
Join the Liu Family in Supporting PHA
The Liu family was vacationing in the Netherlands in 2012 when their 2-year-old daughter, Esther, had a heart attack. Two days later, she was diagnosed with pulmonary arterial hypertension, with an unknown cause. Since then, she has received a double lung transplant and travels all over the world with her mother Michelle, a physician and Pulmonary Hypertension Association (PHA) board member, to share their PH journey. Dr. Liu, shares that story as part of PHA’s fall fundraising campaign.
Press Release: November is PH Awareness Month
The Pulmonary Hypertension Association’s “PHacing the Future Day by Day” campaign strives to educate people about pulmonary hypertension.
It’s Pulmonary Awareness Month. Help spread the word about PH!
Join the Pulmonary Hypertension Association in November by promoting Pulmonary Hypertension awareness. Visit our PH Awareness Month calendar and toolkit to download shareable resources. This year’s theme is “PHacing the Future Day by Day.” Help us spread the word by sharing our social media posts and resources.
Raise Awareness for Pediatric PH
October is Children’s Health Awareness Month, so we’re promoting awareness of pediatric pulmonary hypertension (PH), which affects children under 18. Parents and children with PH often need to learn special considerations for attending school, transitioning to adult PH care and more.
Right Heart Fight Raises $39K in Oklahoma City
The Oklahoma City pulmonary hypertension (PH) community raised more than $39,000 for the Pulmonary Hypertension Association at the sixth annual Right Heart Fight. The Oct. 22 event attracted people with PH, families, friends and health care professionals. The event featured lunch, dessert, yard games, a silent auction and a remembrance walk.
PHA Journal Covers CTEPH-Related Issues
The newest issue of Advances in Pulmonary Hypertension is now online. Volume 21, Issue 3 is guest-edited by Gustavo Heresi, M.D., M.S., and Richard Krasuski, M.D. The issue focuses on chronic thromboembolic pulmonary hypertension challenges, such as under-recognition of the disease and delayed diagnosis.
Study: Sotatercept in Combined Therapy Can Improve PAH Outcomes
Results of a Phase 3 study showed that sotatercept added to FDA-approved therapy improved the primary endpoint in six-minute walk distance and secondary efficacy outcome measures. The Phase 3 STELLAR trial evaluated the safety and efficacy of sotatercept for adults with pulmonary arterial hypertension.
Support Group Leaders Participate in Regional Training
Leaders from Pulmonary Hypertension Association support groups in Ohio, Kentucky, Michigan and Indiana recently participated in a regional training summit. The Sept. 18 event in Louisville, Kentucky, was an opportunity for leaders to meet, share information and support each other. Leaders discussed confidentiality, welcoming and supporting attendees, how to ensure everyone has a chance to share, managing difficult situations, and other key aspects of support group meetings.
How You Can Raise PH Awareness in November
Join the Pulmonary Hypertension Association (PHA) in November to celebrate Pulmonary Hypertension Awareness Month. Help us raise awareness about PH with downloadable tools and shareable resources. This year’s theme is “PHacing the Future Day by Day.” Throughout November, PHA will share information about pulmonary hypertension risk factors and symptoms through its award-winning interactive, PH Awareness Month calendar.
Do You Use a CADD Legacy Pump? Be Aware of Potential Cassette Issues
Some people who use CADD Legacy pumps for Remodulin, Veletri or Flolan have encountered unpredictable “no disposable” alarms. The no disposable alarm is supposed to show that no medication cassette is present. However, the alarms sometimes go off when cassettes are correctly loaded.
New Pathlight Reflects PH-Related Transitions
If you’re a member of the Pulmonary Hypertension Association (PHA), you should have received the September 2022 issue of Pathlight, our member magazine. The September cover story recaps the joy and excitement of PHA 2022 International PH Conference and Scientific Sessions. As our first in-person event since 2019, PHA 2022 reflects September issue’s theme, transition. The issue also recognizes the many kinds of transitions our community encounters with pulmonary hypertension.
Philadelphia Walk Raises $30K for PHA
The Philadelphia-area pulmonary hypertension community raised $30,000 at its first in-person O2breathe walk since the pandemic began. The Oct. 8 event in Philadelphia’s South Street Headhouse District featured a celebration of the participants and top fundraising teams and individuals.
Learn the Connection Between the Lungs and Liver
October is Liver Disease Awareness Month. This month, the Pulmonary Hypertension Association spreads awareness of liver health, including symptoms of portopulmonary hypertension. Download about brochure and view our videos to learn more.
Get Ready for Our Open Enrollment Webinars in October
Get your questions on insurance and Medicare answered in our PHA Live webinars on open enrollment. The webinar series begins Oct. 6 and continues every Thursday in October. Danielle Burkett, C.M.A, of Duke University, will present two webinars on Medicare and participate in the final Q&A session with PHA’s Jaeger Spratt, M.S.W., who also will present the first session.