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.
Read “Finding Hope Through Devastation” and Other Inspirational Stories in Pathlight
The winter 2022 issue of Pathlight deals with growth. This issue’s articles recount the many ways the pulmonary hypertension community has grown as patients manage their disease. Discover inspiration from volunteers, advocates, fundraisers and young parents confronting loss and PH. These stories are available only in Pathlight magazine, a benefit of your PHA membership.
PHA Works to Address CADD MS-3 Pump Shortages
Since becoming aware of disruptions in CADD-MS3 access earlier this year, the Pulmonary Hypertension Association (PHA) has been advocating for prompt access to treprostinil. Supply chain disruptions have affected supply of the pump’s LCD screen and slowed the manufacturer’s ability to service pumps for reuse. As a result, specialty pharmacies halted new patient starts on the MS3, and eligible patients may have been shifted to a delivery system for Remodulin.
PHA Names 2022 PHA Innovation Research Awardee
Csaba Galambos, M.D., Ph.D. is the first recipient of the Pulmonary Hypertension Association (PHA) Innovation Research Award. Dr. Galambos is the director of pediatric pulmonary research at Children’s Hospital Colorado. His research seeks to understand lung vascular development to develop new strategies for earlier diagnosis, prevention and potential cures for infants and children with pulmonary disease and PH.
PH Awareness Month Resources Reach Nearly 300,000 in November
Throughout November, the Pulmonary Hypertension Association educated people about risk pulmonary hypertension risk factors and symptoms. Our award-winning interactive PH Awareness Month calendar received more than 3,000 visits in November, and our social media posts reached 285,435 people, garnering more than 8,000 comments, likes and shares.
Matching Gift Inspires Increased Monthly Donations
Thanks to the GivingTuesday donations, we can support more people with pulmonary hypertension (PH). Your donation helps the Pulmonary Hypertension Association promote PH awareness, support research and ensure earlier diagnosis. This year, a $10,000 matching gift inspired many to join or upgrade their Sustainers Circle monthly contributions.
Prevent Treatment Disruptions in the New Year
Is your insurance changing in 2023? If so, make sure to update your care team and specialty pharmacy. Give your health care team plenty of time to tackle potential obstacles by notifying them right away of any insurance changes. Don’t wait till the new year.
Thank you for Advocating for Improved Oxygen Access
Thanks to the pulmonary hypertension (PH) community for participating in this year’s PH Awareness Month Day of Action. People with PH and their loved ones answered the Pulmonary Hypertension Association’s call to sign a petition to improve access to supplemental oxygen.
CTEPH Patient Finds Community Through PHA Facebook Group
Karly Loree, 30, felt isolated after her chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis. But when she discovered a Pulmonary Hypertension Association support group for people with CTEPH, she found support, hope and community. As she awaits surgery this month, she shares her story for the Pulmonary Hypertension Association’s end-of-year fundraising campaign.
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.