Medical Professionals
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:
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.