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.
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|
|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|
|Michael Patrick Gray, MPH||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.
Coming Soon: PHA 2024 Theme Contest
Start brainstorming ideas for the PHA 2024 theme. Our theme contest kickoff is right around the corner for PHA 2024 International PH Conference and Scientific Sessions. Starting June 22, you can submit theme ideas and help set the tone for PHA 2024. The winner will receive unlimited bragging rights, a $25 Amazon gift card, PHA swag and a free one-year individual Pulmonary Hypertension Association membership.
Advocates Make an Impact with World PH Day Legislative Visits
Pulmonary hypertension advocates met with congressional offices in May to request support for health care reforms. The advocates urged legislators to cosponsor the Safe Step and the H.E.L.P. Copays acts. They also discussed the need for supplemental oxygen access reform. Find out which senator signed on to the Safe Step Act a few days after hearing from a PHA advocate.
PHA Comments on ICER Review of Sotatercept
The Pulmonary Hypertension Association recently asked the Institute for Clinical and Economic Review to modify its draft document about sotatercept for pulmonary arterial hypertension (PAH). PHA seeks changes to language about medication side effects, supplemental oxygen access and sotatercept’s unique characteristics to potentially treat PAH. ICER, a private, non-governmental organization, regularly reviews new prescription drugs and issues recommendations about value and pricing.
Help Us Learn About People with PH and HHT
During HHT Awareness Month, the Pulmonary Hypertension Association joins Cure HHT to raise awareness of hereditary hemorrhagic telangiectasia, a condition that can cause pulmonary hypertension. We need your help to help educate others about PH and HHT. If you have HHT-related pulmonary arterial hypertension or want to understand your risks, complete our brief survey.
Support Group Leaders Enhance Skills at Training Workshop
Support group leaders from California and Arizona participated in the Pulmonary Hypertension Association’s most recent Support Group Leader Training Institute. The May 7 event in San Diego featured interactive activities to enhance participants’ skills in planning, promoting, hosting and managing support group meetings.
Advocacy Pays Off Now That Full Senate Will Consider Safe Step Act
Thanks to Pulmonary Hypertension Association (PHA) advocacy efforts, the Safe Step Act moves to the full Senate floor for the first time. “This is a huge step in the legislative process. While there is more work before this bill becomes law, PHA celebrates this milestone achievement,” says PHA President and CEO Matt Granato.
PHA Participates in World Heart Federation Forum
Pulmonary Hypertension Association President and CEO Matt Granato recently participated in the World Heart Federation forum on rare cardiovascular diseases. Matt represented PHA and the pulmonary hypertension community at the event in Geneva, Switzerland, with Lauren Janzen, a patient and advocate from Wisconsin.
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.
PHA Educates Health Care Providers at ATS Conference
The Pulmonary Hypertension Association participated in the American Thoracic Society Conference this week to educate attendees about PHA resources and benefits for patients and professionals. PHA also met with industry partners and soaked science (including clinical trial results) presented at sessions. Learn more about benefits for health care professionals.
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.
Texas Third Graders Rally for Classmate With PH
Hughes Elementary School showed its true colors for World PH Day when students and staff dressed in purple to support third-grader Isla Grey, who has PH. Isla’s class also raised $660 in quarters in April for pulmonary hypertension research. Isla’s mom Jennifer Morrow shares their story in the Right Heart Blog.
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.
Pandemic Didn’t Impede PAH Patients Enrolled in PHA Registry
A new-peer reviewed research paper showed that people with pulmonary arterial hypertension enrolled in the PHA Registry didn’t experience medication delays, increased emergency room visits or more hospital stays. The paper, which appeared in the April 18 issue of the Pulmonary Circulation Journal, is the 15th published paper based on PHA Registry data.
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.
Detroit Walk Raises Almost $7K for PHA
The Detroit pulmonary hypertension (PH) community raised $6,795 for the Pulmonary Hypertension Association O2breathe walk on May 6. The event featured Tammera Tubolino, who recounted her sister Kristy’s CTEPH journey. The event also featured longtime support group leader Carla Kinsey.
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.
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.