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.
Avenues to Adoption: PH and Paths to Parenthood
Three months before Kellie and Paula Tasto got married, Kellie learned that she had pulmonary hypertension (PH). She was critically ill with severe right heart failure, and she was devastated to learn that PH would affect their plans to start a family. “I knew there was a greater risk
My Miracle Baby: A Story of Surrogacy
Skye Ellison will never forget the day she found out she and her husband and I were going to have a baby. Their fertility clinic called to let them know their surrogate’s pregnancy test had come back positive. After almost a lifetime of hearing, “You won’t be able to have children,” Skye felt like she had achieved the impossible.
Share Your Story for American Heart Month
Spread pulmonary hypertension (PH) awareness by sharing your story for American Heart Month in February. Heart disease can lead to PH or exacerbate symptoms. Help us call attention to the importance of cardiovascular health. Share how you manage your PH and heart disease or your tips for improving heart health.
Ask New Congress to Support PH Issues
Now that the 118th Congress is in session, the Pulmonary Hypertension Association urges Congress to work across the aisle. We need bipartisan legislation to improve health care for people with pulmonary hypertension and other serious and chronic health conditions.
Find Resources for Copay Assistance
The new year can be challenging for finding financial assistance for pulmonary hypertension (PH) medications. Although charitable assistance foundations with PH funds currently are closed, other avenues for assistance are available. Visit the Pulmonary Hypertension Association’s financial assistance page for more information.
PHPN Symposium to Feature Lead Author of New PH Guidelines
Pulmonary hypertension (PH) health professionals can meet the primary author of recently released PH guidelines at the PH Professional Network Symposium. Dr. Marc Humbert will discuss the new PH guidelines during the Sept. 28-30 PHA event in Arlington, Virginia. The guidelines, developed by a taskforce from the European Society of Cardiology and European Respiratory Society, were published in August 2022.
PH Professionals: Check Out Genetics and PH Courses on PHA Online University
The Pulmonary Hypertension Association added three new courses on Genetics and PH to its Online University. Watch the videos to earn 2.75 continuing education credits.
CEO Update: Seeking New Possibilities in a New Year
While the world seems to have moved on from the pandemic, many in the pulmonary hypertension community are trying to catch up. Because PH makes people more vulnerable to serious COVID side effects, the community remains cautious about how to proceed. This year, the Pulmonary Hypertension Association wants to help you transition from pandemic mode to more familiar routines.
Familial PAH Affects 4 Generations
Whitney Whited was 10 when her father died of pulmonary arterial hypertension (PAH) complications. Recently, she learned about the BMPR2 gene and sought genetic testing for her 11-year-old daughter. Whitney, 34, who doesn’t have PAH, shared her family’s story in the winter 2022 issue of Pathlight, the Pulmonary Hypertension Association’s member magazine.
Apply for new PHA Research Grant
The Pulmonary Hypertension Association is accepting applications for a new grant to support junior pulmonary hypertension researchers. Apply now, or spread the word about PHA’s Early Career Mentored Scientist Award. The one-year grant covers up to $65,000 for PH-related research projects that have been favorably reviewed but not funded by the National Institutes of Health. Apply by March 20.
Retiree Stays Active as She Adapts to CTEPH
Joyce Sandberg of Port St. Lucie, Florida, noticed shortness of breath nine years ago while biking. A few years later, she developed blood clots and chronic thromboembolic pulmonary hypertension. But she doesn’t let her conditions stop her from enjoying life, taking cruises and attending classic car shows with her husband.
Fulfill a New Year’s Resolution: Become a PHA Support Volunteer
The Pulmonary Hypertension Association seeks empathetic volunteers eager to support their peers in the pulmonary hypertension community. As the year begins, we have several volunteer shifts for our in-person, phone and online support services. Tiffany Gunville of Minot, North Dakota, encourages others to get involved. “Others were there for me. Now it’s my turn to give back.”
Recall of CADD Infusion Systems Impacts Many PH Patients
A manufacturer recall of specific lots of CADD infusion systems recommends against using the affected systems for life-sustaining medication including brand and generic treprostinil (Remodulin) and epoprostenol (Veletri, Flolan).Patients contacted by their specialty pharmacy or PH care team about the issues described below should follow the provided directions immediately.
Important Update for the PH Community Regarding CADD Infusion Systems
Specialty pharmacies that distribute pulmonary hypertension (PH) medications are currently reaching out to patients and health care professionals to provide an urgent update about specific lots of CADD infusion systems. If you receive a call or email from your specialty pharmacy about this issue, please respond as soon as possible. PHA is actively monitoring this situation and will provide additional information as it becomes available.
PHA 2022 Courses Available on PHA Online University
Sessions from the PHA 2022 International PH Conference and Scientific Sessions are now available as courses in PHA Online University.
How to Manage Staff Changes for PHAR
Your PHA Registry (PHAR) team may change over time with new staff coming onboard and others rotating off. Here are three tips for a smooth transition.
Join a PHA PHPN Committee
The Pulmonary Hypertension Association is seeking volunteers to participate in its PH Professional Network (PHPN) committees. Committee membership is a great way to give back to the pulmonary hypertension (PH) community and to connect with peers.
Financial Assistance Resources for Your Patients
The start of a new year can be a challenging time for patients as they look for assistance to afford copayments. Direct your patients to these resources for financial assistance.