PHA News
For patients, families, caregivers and health care professionals
The Right Heart
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.
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.
As Diagnosis Shock Wanes, Jessica Williams Learns Hope and Gratitude
Jessica Williams felt like she lost everything she’d ever worked for when she was diagnosed with pulmonary hypertension in February 2020. Williams had to give up the cleaning company she started so to manage her disease. Williams, who lives with her parents in Omaha, shares her journey with the Pulmonary Hypertension Association’s Right Heart Blog.
Shannon Munson soars beyond tough times
Shannon Munson of San Clemente, California, makes the most of living with pulmonary hypertension. Diagnosed in 2006, Munson lives an active lifestyle and volunteers at her children’s schools. “Over the last 17 years, I have continued to do all the things I was told I would never do again.”
‘Legislation Should be Passed Today for Accessible Oxygen’
Cris Dingman was diagnosed with pulmonary arterial hypertension in December 2016, and was immediately put on oxygen.
The Case for Portable Liquid Oxygen
Transitioning to liquid oxygen was challenging. My oxygen needs increased requiring me to learn a new system. This change forced me to admit that my progressive disease was progressing.
Oxygen Users ‘Desperately Need More Options’
Nancy Zeppa, 60, is a leader of the Pulmonary Hypertension Association South Jersey Support Group. Her journey with oxygen began in August 2019 when she was diagnosed with pulmonary arterial hypertension.
How Ron Ancrum Found Strength to ‘Keep On Moving’
Ron Ancrum was 25 when he learned he had sarcoidosis. Three decades later, he learned the condition had caused pulmonary arterial hypertension. He shares his path to positivity and self-publishing in the Pulmonary Hypertension Association’s Right Heart Blog. Read his story.
Featured News
New PAH Treatments Increase Patient Options
Pulmonary hypertension treatment has come a long way since PHA’s founding in 1991. In the past week, the Food and Drug Administration approved the 15th and 16th treatments for pulmonary arterial hypertension. Read about the new treatments in PHA's CEO Update.
PHA 2024 Registration Opens March 29
Registration opens Friday, March 29, for PHA 2024 International PH Conference and Scientific Sessions. Take advantage of early registration discounts for the Aug. 15-18 event in Indianapolis. Make sure your Pulmonary Hypertension Association membership is up to date to receive the discounted member rate and apply for scholarships to further reduce conference costs. Scholarships will be available on a first-come, first-served basis until June 15.
Hear Coach Bear Recount His PH Comeback at Houston Workshop
Former basketball coach Barron "Coach Bear" Honea knows the importance of resilience on and off the court. But his most formidable challenge didn’t come from a rival team – it came in the form of pulmonary arterial hypertension. Honea will share his PH comeback at the PHA Connects: PH Community Workshop in Houston. Join us April 6 for his keynote speech and other invaluable sessions.
Discover These Must-Read Stories in New Pathlight
The most recent issue of Pathlight explores how access to PH care has grown by focusing on PHA’s 10-year-old accreditation program. Our quarterly member magazine also looks ahead at PHA 2024, including tips for traveling with oxygen, eight fun reasons to visit Indianapolis and insight from past attendees. Our cover story takes us behind the scenes of performing with PH with Steve Smith from Colorado.
PH Professionals: Help Us Create a New Advanced Practice Nursing Certificate
The Pulmonary Hypertension Association is developing a certificate program to support advanced practice providers and nurses who work with PH patients. Help shape this educational program by sharing your educational requirements and preferences. Your input will guide us in developing tailored learning opportunities to support your professional growth and advancement. Complete this brief survey by April 1.
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.
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.
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.
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.
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.
Discover New Estate-Planning Tool
The Pulmonary Hypertension Association has a new resource called FreeWill to help you arrange your future and support the people and causes closest to your heart. The online tool guides you through the process of creating your will or trust. It’s easy to use, free and takes about 20 minutes to complete.
PHANews.org, a publication of the Pulmonary Hypertension Association (PHA), is the trusted source of up-to-date news, community events listings and lifesaving information about pulmonary hypertension for patients, families and caregivers, healthcare professionals and supporters.
Pulmonary Hypertension Education Event, PH Community Workshop, Comes to San Diego on May 6
PHA Connects: PH Community Workshops offer in-person free education for anyone affected by pulmonary hypertension (PH), including patients, families, friends and health care professionals.
Pulmonary Hypertension Related to Interstitial Lung Disease (Patients)
Pulmonary Hypertension Related to Interstitial Lung Disease What is pulmonary hypertension? Pulmonary hypertension is
Pulmonary hypertension related to interstitial lung disease (hcps)
Patients with Group 3 pulmonary hypertension related to interstitial lung disease are at an increased risk of mortality and morbidity including higher supplemental O2 requirements, reduced functional capacity and health related quality of life compared to those with ILD alone (Nikkho et al., 2022; Klinger, 2016). Median survival among patients with PH-ILD may be as low as 0.7 years among those with severe PH (Hassan, 2005).