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.
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.
Risk and Resilience in Pulmonary Arterial Hypertension and Genetically Susceptible Individuals (RARE PAH)
Population: Individuals with HPAH and their family members Start Date: March 5, 2024 End Date: April 1, 2024 Phase: N/A Institution: Vanderbilt University Medical Center Study Website: https://redcap.vanderbilt.edu/surveys/?s=87Y9YYAW9Y7WWT88 Vanderbilt University Medical Center seeks individuals with HPAH and their family members to participate in
Insurers Must Apply Copay Assistance Toward Your Health Care Costs
Insurance companies must now count copay assistance toward deductibles and out-of-pocket costs. Health and Human Services recently stopped fighting a 2020 federal court ruling that prevents insurance companies from shifting health care costs on patients through copay accumulators. The Pulmonary Hypertension Association has worked for years to end copay accumulators, which allowed insurance companies to profit from copay assistance without reducing patients’ financial burdens.
Game, Set, Match: Tennis Buff ‘Smashes’ PH
When Kathryn Buffington was diagnosed with PH, a doctor said she’d never play tennis again. Her response? “Watch me.” Buffington, 73, shares her exercise and medication regimens and positive thinking with the Pulmonary Hypertension Association’s Right Heart Blog.
New Fundraising Walk Among PHA Events in April
A new Pulmonary Hypertension Association fundraising event is coming to South Carolina. The May 4 event in Anderson, South Carolina, is among several PHA fundraising events this spring. Other upcoming walks include O2breathe walks in Southern California and Houston.
Explore PH Advocacy in New Town Hall
Interested in advocating for the pulmonary hypertension community? Learn how to turn your story into a powerful advocacy tool that can make a difference for the PH community. Join PHA’s virtual advocacy town hall on Wednesday, March 27, at 2 p.m. EST.
PH researchers: Apply for Clinical Data From PVDomics Study
The deadline is to apply for clinical data from the groundbreaking PVDomics study is March 1. Proposed projects should reflect the PVDomics goal to identify pulmonary vascular disease sub phenotypes and biomarkers to improve diagnosis and treatment. No funding is available.
PHA Continues Oxygen-Access Advocacy With Targeted Event
People with various lung diseases came together Jan. 31 to advocate for supplemental oxygen reform. The Pulmonary Hypertension Association collaborated with the American Lung Association, Pulmonary Fibrosis Foundation and COPD Foundation for a virtual Oxygen Hill Day.
Houston Area: Join PHA for an Action-Packed, Informative Weekend
The Pulmonary Hypertension Association is coming to Houston for a weekend of education, support and empowerment. Join us for the PHA Connects: PH Community Workshop on Saturday, April 6 and the Houston O2breathe Walk on Sunday, April 7.
Pediatric, Early Career Research Grants Open
The Pulmonary Hypertension Association is accepting applications for two research grants. Apply for the Pediatric Research Award by March 13 or the Early Career Mentored Scientist Award by April 3. PHA will start accepting applications for its Innovation in PH Research Award in March.
Get in Rhythm with American Heart Month
For those with pulmonary hypertension, paying close attention to your cardiovascular health can be vital to longevity. Up to 60% of people with PH can attribute their condition to left heart disease, and nearly 10% of people diagnosed with congenital heart disease will develop PH. This month is a good time to make smart choices for your long-term health.
PHA Support Groups Share Their Holiday Celebrations
Pulmonary Hypertension Association support groups recognized members and marked the holidays in year-end celebrations. Here’s a snapshot of some of their celebrations.
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.