Pathlight - Autumn 2023

A publication of the Pulmonary Hypertension Association

Investment in Patient Care

PLUS PUTTING NURSING EXPERIENCE TO WORK

LIVING PHEARLESSLY To Raise Awareness

Author’s

‘Survival Guide’ To Longevity

2023 // Volume 33 // No. 4

Life With PAH Can Be Challenging.

Learning About PAH Shouldn’t Be. Join a free, educational webinar in the comfort and safety of your home

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Understanding. Empowerment. important to you. treatment goals. community.

Webinars are available at various dates and times so you can register for one that best fits your schedule.

Register today at PAHregister.com or call 1-888-370-8111 Your PAH healthcare team should always be your main source of information. This program is not intended to provide medical advice or address specific medical concerns.

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PAH=pulmonary arterial hypertension. *The speaker is a paid consultant presenting on behalf of Actelion, a Janssen Pharmaceutical Company, and must present information in compliance with FDA requirements applicable to Actelion, a Janssen Pharmaceutical Company.

This program is sponsored by Janssen Pharmaceuticals, Inc. ©2021 Actelion Pharmaceuticals US, Inc. All rights reserved. cp-201358v1 0121

Knowledge. Understanding. Empowerment.

IN THIS ISSUE 2023 // VOLUME 33 // NO. 4

8

7

PHA Connects Hub Highlights Community Resources

8

PHPN Symposium: Investment in Patient Care

13 Patient Concerns, PHA Priorities Come to Life on Capitol Hill 15 Improve Your Specialty Pharmacy Experiences

13

16 How the Community ‘Lives PHearlessly’ and Raises PH Awareness 18 An Author’s ‘Survival Guide’ to Longevity 22 Support Group Moderator Helps Others Find Answers

16

26 Community Workshops Teach Attendees To Manage Disease 28 Empowerment Through Education and Peer Support 30 A Passion for Patient Education

ON OUR COVER 26

18 30

Gail Boyer Hayes authored the first three editions of PHA’s “Pulmonary Hypertension: A Patient’s Survival Guide,” the precursor to “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients.” Diagnosed in 1983, Hayes is one of the few persons who have lived 40 years with PH.

IN EVERY ISSUE 5

Letter From the Chair

32 Calendar 33 Quick Takes 34 Passages

PHASSOCIATION.ORG 3

PUBLISHER

BOARD OF TRUSTEES

Matt J. Granato (he/him) President & CEO

Officers Tony Lahnston, chair Traci Stewart, RSN, CSN, CHFN, chair elect Nicole Creech, treasurer Colleen Connor, secretary Colleen Brunetti, MEd, CHC, immediate past chair Matt J. Granato, LLM, MBA, president and CEO, ex officio

STAFF Linda Busche (she/her) Editor-in-Chief Karen Smaalders (she/her) Vice President, Communications and Marketing

CONTRIBUTORS

Trustees

Mia Chiarelli, Danielle Clement, Jen Cueva, Jenny Erico, Angela Golden, Haley Johnson, Zan Laughlin, Daniel Layton, Vicky Peterson, Abby Sickles, Jaeger Spratt. Cover story images: Erica Urech Photography

Todd Bull, MD, Scientific Leadership Council chair elect Murali Chakinala, MD, FCCP, Scientific Leadership Council immediate past chair Ramona Doyle, MD, MSc Anna R. Hemnes, MD, Scientific Leadership Council chair Kimberly Jackson, RN, BSN, PH Professional Network chair Mitch Koppelman, PhD Michelle Ferdinand Liu, MD, MPH, FAAOA Mike Lentz Melissa Magness, MSN, APRN, CNP-AC, PH Professional Network chair elect Mike Naple Monica M. Penaranda Diane Ramirez Doug Taylor Matt Wall Delphine Yung, MD, Accreditation and Registry Committee chair

Mary Beth Ramsey (she/her) Graphic Design

CONTACT 301-565-3004 PHAssociation.org

SUPPORT LINE 800-748-7274 We’re here to support anyone with a connection to PH. (Daytime, please.)

Submissions to Pathlight are welcome.

Please email your articles, photos and queries to Communications@ PHAssociation.org.

HEADQUARTERS

Emeriti ex officio

1629 K St. NW, Suite 300 Washington DC, 20006

C. Gregory Elliott, MD, FCCP, MACP Michael D. McGoon, MD Edwin Simpson Judith Simpson, RN, EdS

BILLING AND MAILING ADDRESS

Honorary

8401 Colesville Road, Suite 200 Silver Spring, MD 20910

Carl Hicks PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE Kimberly Jackson, RN, BSN, chair Cheri Abbott, RN, CCRP April Blakley, RN, BSN Jessie Dunne, PharmD, BCPS, BCCP Loida A. Johnson, CRNP Tisha Kivett, RN, BSN Melissa Magness, MSN, APRN, CNP-AC, chair-elect

SCIENTIFIC LEADERSHIP COUNCIL Anna R. Hemnes, MD, chair Todd M. Bull, MD, chair-elect Murali M. Chakinala, MD, FCCP, immediate past chair Eric D. Austin, MD, MSCI Sonja Bartolome, MD Vinicio A. de Jesus Perez, MD, FCCP Teresa De Marco, MD Ankit A. Desai, MD, FACC, FAHA Jeffrey Fineman, MD Robert P. Frantz, MD Mardi Gomberg-Maitland, MD, MSc Daniel Grinnan, MD Gustavo A. Heresi, MD, MSci Kristin B. Highland, MD, MSCR Nicholas Kolaitis, MD, MAS Matthew R. Lammi, MD, MSCR Peter Leary M.D., PhD Deborah J. Levine, MD Wes McConnell, MD Lana D. Melendres-Groves, MD Josanna Rodriguez-Lopez, MD John J. Ryan, MD, MB, BCh, BAO Sandeep Sahay, MD Thenappan Thenappan, MD Anjali Vaidya, MD, FACC, FASE, FACP Nidhy Varghese, MD Corey E. Ventetuolo, MD, MS R. James White, MD, PhD Distinguished Advisers David B. Badesch, MD Erika S. Berman Rosenzweig, MD Bruce H. Brundage, MD Richard Channick, MD C. Gregory Elliott, MD, FCCP, MACP Karen A. Fagan, MD Michael D. McGoon, MD Vallerie V. McLaughlin, MD John H. Newman, MD Ron Oudiz, MD

LETTER from the

CHAIR A

s the days get shorter and the warm sun of the summer feels distant, I find myself reflecting on important events of 2023.

Most recently, we celebrated Pulmonary Hypertension Awareness month by calling attention to those who “Live PHearlessly.” Over the past 16 years that I’ve been involved with this organization, the Pulmonary Hypertension Association has made great strides in creating PH awareness.

This year, we gathered and are sharing the stories of many resilient people with PH, including several from around the world. You can see a sample on Pages 16 and 17. Thanks to those who shared their stories, we continue to draw attention to this disease, its risks and the need for early diagnosis. I hope that misdiagnosis will soon become a thing of the past, due to the efforts of all those involved with PHA. PHA’s work to increase understanding of PH is a yearround effort, and part of that work is providing continuing education opportunities for health care professionals.

In September, we gathered in Arlington, Virginia, for the PH Professional Network Symposium. I had the pleasure of participating in the opening reception, and I could could feel the excitement in the air. This year drew more than 600 health care professionals, including doctors, nurses, pharmacists, respiratory therapists and researchers. They came from nearly every state and several countries.

PHA events and programs, such as PHPN Symposium, are made possible by the dedication of our volunteers, and I would like to recognize two former members of the PHA board.

It is with great sadness that PHA offers condolences to the families of Frank H. Cann Jr. and William “Bill” Hoff. I admire and respect both men for their hard work on behalf of the PH community. We have lost two wonderful gentlemen.

Cann, 58, stepped down from the board as the codevelopment chair in 2020. He was very jovial, loved to have a good time and got things done. He was committed to charities that touched his heart, and he advocated for the

legislative changes in Massachusetts to benefit people with PH in honor of his son-in-law, Ernesto, who has PH. Cann treasured his family, especially his wife, Sheri, whom he called his “rock.” He truly loved the PH community and wanted to be a force for good, and he was. Being a fellow Bostonian, I loved catching up with him on the Celtics and Red Sox. Cann died peacefully at home on Aug. 10.

Hoff was a long-time finance committee member and later served as the PHA treasurer. During his time with PHA, Hoff was critical to guiding the organization’s financial planning and success. He was a great asset and supporter of PHA, as well as a wonderful person with great financial acumen. He was a keen observer of detail and financial dynamics and always asked insightful, challenging questions.

I worked side-by-side with him for many years on the finance committee and after he took over for me as treasurer.

I learned a lot from him and am very saddened to learn of his passing on Sept. 25.

As we look ahead to 2024, I hope you will continue to share our resources and information about PH. As a patientfocused organization, PHA relies on members to help us fulfill our mission to extend and improve the lives of those affected by PH. Please enjoy this issue of Pathlight magazine in gratitude for your membership. As always, it includes the inspirational stories of people with PH and their caregivers, as well as health information and news.

As we look forward to 2024, I wish everyone a happy and beautiful holiday season.

Tony Lahnston Chair, Pulmonary Hypertension Association Board of Trustees PHASSOCIATION.ORG 5

Navigating Pulmonary Hypertension A Guide for Newly Diagnosed Patients NEW!

ORDER YOUR FREE COPY — IN SPANISH OR ENGLISH 301-565-3004 PHAssociation.org/NavigatingPH Support@PHAssociation.org 6 PATHLIGHT ISSUE 4

NEWS

PHA Connects Hub Highlights Community Resources

T

Mail

Face every day empowered by hope PHA unites patients, health care providers, loved ones and advocates, empowering our entire network with support to manage their condition and thrive in life beyond a pulmonary hypertension diagnosis.

he Pulmonary Hypertension Association aims to connect more members of the PH community to PHA’s plethora of resources.

Whether you’re an individual looking for support and information after a pulmonary hypertension diagnosis or a health care professional seeking education to share with a patient, the PHA Connects Hub offers an easier way to find what you need.

While working on a comprehensive website redesign and technical systems upgrade, PHA wanted to share the power of its community and simplify access to its resources.

PHA Connects Hub includes a form to order or download “Navigating PH: A Guide for Newly Diagnosed Patients”, as well as resources for caregivers, parents, teens and long-term survivors.

The PHA Connects Hub also includes links to associated conditions and diseases that increase the risk of PH, ways to exercise and how to prepare for emergencies.

Visitors to the new landing page can find resources on comprehensive care through the PHA-accredited PH Care Centers, locate support groups and fundraising events near them, and read inspiring blog posts by others living with PH on PHA’s award-winning Right Heart Blog.

Along with the new landing page, PHA is sharing information about PHA Connects Hub through its email communications, social media posts and website ads. PHA offered a sneak peak of the PHA Connects Hub to health care professionals at its recent PHPN Symposium in Arlington, Virgina.

The imagery used on the new landing page features the PHA flame along with a mosaic theme that represents how individuals who connect with PHA are strengthened by community. The theme dovetails nicely with PHA’s PHA2024 Conference theme, “Stronger Together.” PHA 2024 International PH Conference and Scientific Sessions takes place August 15-18 in Indianapolis. The PHA Connects Hub campaign launched for PH Awareness Month.

Visit connects.phassociation.org to easily find and download resources on PHA Connects Hub.

PHASSOCIATION.ORG 7

PHPN SYMPOSIUM

INVESTMENT IN PATIENT CARE

Professionals Advance PH Knowledge To Apply to Their Practices

8 PATHLIGHT ISSUE 4

PHPN SYMPOSIUM

A

fter attending his sixth PH Professional Network Symposium, nurse practitioner Steve Walker is still amazed by new advancements in pulmonary hypertension therapy and care.

“Each change improves the way [health care professionals] work and the lives of our patients,” says Walker, who works at Children’s Hospital Philadelphia.

“Each change means we’re making progress.”

Walker was among more than 600 health care professionals who attended the Pulmonary Hypertension Association’s PHPN Symposium Sept. 28-30 in Arlington, Virginia. The attendees came from nearly every state and several countries, including Lebanon, Saudi Arabia, Germany and France, to learn the latest in PH research, treatment and care.

Themed “PHoundation for a Brighter Future,” the symposium allowed attendees to network and build longlasting relationships with peers, as well as advance their PH knowledge to apply to their practices.

Advocacy Day kicked off the three-day event. More than 80 health care professionals and PHA staff visited legislative offices on Capitol Hill to educate Congress about PH and patients’ needs. They asked senators to support the Safe Step and HELP Copays acts and proposed the introduction of supplemental oxygen access legislation. [See story, Page 12]. “[Lawmakers] need to know that our patients are suffering,” says Robert Scott, a cardiologist at Mayo Clinic in Arizona and third-time attendee. “They need to know that our patients have difficulty getting access to effective medical therapy, are underinsured or oftentimes can’t afford to continue their medications because it’s too expensive.

Anything we can do to raise awareness is a step in the right direction of attaining accessible health care.”

‘[Lawmakers] need to know that our patients are suffering.

They need to know that our patients have difficulty getting access to effective medical therapy, are underinsured or oftentimes can’t afford to continue their medications because it’s too expensive.’

ROBERT SCOTT, MAYO CLINIC

Pictured: Andrew Kolodziej, University of Kentucky.

PHASSOCIATION.ORG 9

PHPN SYMPOSIUM

Above: Health care professionals network with exhibitors and colleagues in the exhibit hall.

10 PATHLIGHT ISSUE 4

INVALUABLE TAKEAWAYS

The next two days of PHPN Symposium featured a range of sessions where attendees could learn and reflect on inequalities in PH treatment, provider compassion, building a successful care team, oxygen concentrators, technical guidelines to follow for best practices and more.

Marc Humbert, MD, PhD, director of respiratory and intensive care at the French Pulmonary Hypertension

Reference Centre, shared the new 2022 European Society of Cardiology and European Respiratory Society guidelines for treatment and diagnosis.

Attendees learned early detection strategies from Humbert, who is the primary author of the new guidelines, as well as therapy recommendations and how to use a new tool to assess patients’ risks.

Another session highlight was “Foundation of a Successful Care

PHPN SYMPOSIUM

Team,” where panelists from four Pulmonary Hypertension Care Centers discussed the similarities and differences in their care team models. Panelists Michael Eggert, MD, FCCP; Melisa Wilson, DNP, APRN, ANCP, BC; Diahann Wilcox, DNP, APRN; and Elise Whalen, DNP, MSN, APRN, FNP-C, CPN, explored frequent challenges faced by their teams and strategies to resolve them.

Vicki Shin, a therapy access manager with Janssen Pharmaceutical, said the session allowed her to reflect on how she can stay better connected with the clinics she serves.

“Understanding what’s happening in the clinics provides me the opportunity to see the challenges they’re facing, such as accessing medication, and then adapting my role to best serve them,” Shin said. “It’s important to be aware and understand what’s happening.”

RESEARCH IN ACTION

A returning feature of the symposium was the lightning round session, where authors of the six highestscoring abstracts presented their work.

Featured topics included therapeutic strategies, diseases and conditions associated with PH, quality of life, and pediatrics.

For Bree Keller, a first-time attendee, every session provided new context and understanding to her role as a research nurse at the University of Colorado.

“I am not a provider, but I now have better insight on what these roles are like,” Keller says. “It’s really helpful to hear about how they’re working with patients because when I see those patients later, I’m already on the same

page as my team. I don’t need time to catch up. I’m ready to serve my patients in the best way I can.”

Throughout the symposium, attendees flocked to the exhibition hall to network with sponsors and colleagues.

Second-time attendee Nora Towne from Hazelhurst, Wisconsin, was interested in learning about the criteria to become a PHA-accredited care center.

“We now know what steps to take and how to take those steps,” said Towne, a specialty triage nurse at Aspirus Cardiology. “We want to make sure we have the support groups, the right doctors and the right tools to check all those boxes.”

Towne also appreciated the opportunity to connect with people face to face.

“It’s nice to be in contact with your peers, especially when you live way up in the north part of Wisconsin where it’s rural and there’s not a whole lot happening,” she said. “Even though I use the communication on [the PHA listserv] or will text over some questions, nothing beats the free flow of conversation in person.”

SUPPORTING SCHOLARSHIPS

The symposium also allowed attendees to socialize while supporting an important cause: scholarships for people with PH and caregivers to attend PHA conferences. Friday night featured a drag bingo fundraiser hosted by the fabulous Tara Hoot of Washington, D.C. Prizes included an Apple watch, wine flights and a nurse care package.

“Tara brought the energy,” Keller says. “She’s from the Midwest and I’m

Steve Walker

Vicki Shin

Nora Towne

Denise Wilson PHASSOCIATION.ORG 11

PHPN SYMPOSIUM

Top left, from left: Frances Santi, MSN, APRN; Sarah King-Brown, BSN, RN; Lisa Ennis, MSN, RN; and Jessica Romanias, BSN, RN; all of CVS Specialty. Top right: Parvati Gopalan, DDS, and Sonny Gopalan, DDS. Bottom left: Adrian Felder, MS, APRN, AGNP-C . Bottom right: Performer Tara Hoot with Sara Paulus, PA-C, and other symposium attendees.

from the Midwest so all her puns and jokes were so relatable. I loved all the sessions, and I loved networking with everyone, but this was in a completely different caliber. [Bingo] added a nice variant to the mix and just elevated the fun.”

CONNECTIONS FOR LIFE

Fifth-time symposium attendee Denise Lewis, a pulmonary hypertension nurse at George Washington University, keeps coming back not only to further 12 PATHLIGHT ISSUE 4

her knowledge, but to keep fostering connections.

“We’re all [working with pulmonary hypertension patients] for a reason,” Lewis said. “It’s interesting to see how someone does something this way and another center does something that way, and you take tidbits from each to elevate your care. You’re not only learning from the sessions, but from the connections you make.”

Lewis said each session offered a different perspective to the field. She’s

excited for the next PHPN Symposium in 2025 in Seattle to advance her PH education further.

“I think [the symposium] helps you reset yourself,” Lewis said. “When you get back to your practice, you take a step back and analyze everything you picked up, and then try to incorporate it. You incorporate the things you appreciate, the things you know are going to take your patients’ care to the next level.”

PHPN SYMPOSIUM

Patient Concerns, PHA Priorities Come to Life on Capitol Hill

H

Above: PH professionals head to Senate offices to advocate for legislation to help their patients.

Below: PH advocates sign the visitors book in the office of Sen. Diane Feinstein (D-Calif.).

ealth care professionals came from across the country for an energy-filled Advocacy Day, which kicked off PHA’s Pulmonary Hypertension Professional Network Symposium. The joy of returning to an in-person event was clear as advocacy groups met and planned their meetings.

The advocates were passionate, and their excitement was visible as they traveled to Capitol Hill.

“Events like this are great because we get the attention of people who really need to know what’s happening … that our patients have difficulty getting access to effective medical therapy,” said Robert Scott, MD, PhD, a transplant cardiologist from Mayo Clinic in Arizona.

Guided by Pulmonary Hypertension Association staff, 81 advocates met with staff from more than 40 Senate offices on Sept. 28. During the meetings, providers brought their patients’ stories to life for legislative staff members, and the staffers listened.

“This is the most impactful way to reach people, much more than sitting on the phone with the insurance company,” said PHPN Chair Elect Melissa Magness, CNP at Cincinnati Children’s Hospital.

Priorities for Advocacy Day included the Safe Step and the Help Ensure Lower Patient Copays acts, as well as supplemental oxygen access. Staff from many offices expressed interest in anticipated legislation to improve oxygen access.

In meetings with senate offices for New York and Connecticut, Tania Von Visger, PhD., assistant professor at University at Buffalo School of Nursing, explained how oxygen access improvements could help not only the PH PHASSOCIATION.ORG 13

PHPN SYMPOSIUM

community, but people affected by other lung diseases as well. The legislative staff were interested in hearing about anticipated legislation to increase patient access to supplemental oxygen, including liquid oxygen.

She noted that several organizations, including some that represent patients and some that represent health care professionals, support supplemental oxygen reform efforts.

“This point needs to be emphasized so people understand the larger impact of our efforts,” Von Visger said.

A large group of advocates from the West Coast met with staff from both California Senate offices, including the office of Sen. Diane Feinstein. Feinstein died later that evening at home in Washington, D.C. After news of Feinstein’s death, attendees said they felt honored to have been among the last to sign the late senator’s guestbook. They also said they appreciated the opportunity to share their patients’ stories with Feinstein’s legislative staffers Andrew Fuentes and Tammy Pham.

Symposium attendees, along with members of the PH community at home, helped elevate the messages that 14 PATHLIGHT ISSUE 4

PHPN advocates brought to Capitol Hill through an Advocacy Challenge. During the event, PH advocates sent 150 messages to more than 100 legislative offices.

For the professionals who came to Capitol Hill, many were thankful for the opportunity to share their patients’ stories and concerns. “[Advocacy Day is] a productive outlet for provider fatigue,” said Mindy Rivera, clinical nurse specialist, Cleveland Clinic. “Providers witness their patients’ heartbreak, and this allows us to make a difference for them, to be the patient voice.”

If Advocacy Day inspires you to action, add your voice to PHA’s advocacy efforts. Call 301-565-3004, ext. 758, or email Advocacy@PHAssociation.org to get involved. Contact your lawmakers through PHA’s Action Center at PHAssociation.org/advocate.

ADVOCACY

Improve Your Specialty Pharmacy Experiences

T

he prescription refill process often is a monthly source of stress, and the beginning of the year can be especially challenging. That’s when new insurance plans and prior authorization renewals start.

Take advantage of a Pulmonary Hypertension Association tool to facilitate better communication between patients and specialty pharmacies: our specialty pharmacy feedback form.

Here’s how members of the PH community used the feedback form this year to resolve their own pain points with medication refills: A patient in Arkansas used the feedback form when the frequency and length of time spent on the phone each month for their medication refills was becoming a big source of stress.

Their pharmacy provided a different option for digitally ordering refills to reduce the number of calls and amount of time spent on the phone.

A patient in Minnesota was unhappy with their insurance coverage, which required some medications to be filled by different pharmacies. After submitting a feedback form, the patient’s preferred pharmacy offered to help the patient bring all medication fills under one pharmacy again.

Another patient experienced delayed or missing medication deliveries and other customer service concerns. After reaching out through the form, the pharmacy assigned the patient a specific contact person to ensure smooth and timely medication deliveries.

Visit PHAssociation.org/specialtypharmacy-feedback to fill out the form. Or call 301-565-3004, ext. 758 so PHA staff can fill out the form on your behalf if you can’t access online resources.

Take Action Early To Avoid Treatment Delays in New Year

T

he new year can bring new challenges, especially when it comes to filling prescriptions for pulmonary hypertension. Ensure your new year gets off to a smooth start with these steps: • Notify your care team. If you expect any insurance changes for 2024, update your provider and specialty pharmacy as soon as you find out.

• Order multi-month refills. If your plan will allow it, make your last refill of 2023 a 60- or 90-day refill to give you peace of mind while waiting for prior authorization renewals.

• Explore financial assistance options.

Visit PHAssociation.org/HELP, or call PHA’s Treatment Access Program at 301-565-3004, ext. 758, to find out what copay or premium assistance options are available.

PHASSOCIATION.ORG 15

PH AWARENESS

How the Community ‘Lives PHearlessly’ And Raises PH Awareness

D

uring Pulmonary Hypertension Awareness Month, people with PH spoke out to share how they “Live PHearlessly.” Scores of people shared photos, tips and anecdotes to reflect their triumphs and challenges.

PHA’s Live PHearlessly campaign showed how participants are more than people with a rare disease. “The inspirational stories of our members demonstrate that a PH diagnosis doesn’t define them,” said PHA Board of Trustees chair Tony Lahnston.

PHA shared the Live PHearlessly stories and quotes on PHAssociation.org, social media and in our newsletters and encouraged participants to share submissions with their personal networks, media outlets and lawmakers. The ‘Living stories helped increase awareness by connecting real people to the disease. fearlessly “Living fearlessly represents me and represents how I want to live,” says Chloe Merritt, 22, who submitted the idea for PHA’s me and awareness month campaign. how I want In addition to the Live PHearlessly campaign, PHA worked to increase to live.’ understanding of PH through its CHLOE MERRITT PH Awareness Month toolkit. We provided downloadable infographics and resources with facts about PH, risk factors, symptoms and treatment. The toolkit included shareable resources such as social media profile and cover photos, social media graphics, an email signature and sample social media posts.

16 PATHLIGHT ISSUE 4

The toolkit also included graphics and sample social media posts for PHA’s Day of Action on Nov. 15. This year, we encouraged the PH community to share their supplemental oxygen challenges with us and write to media outlets using PHA’s “Letter to the Editor” template, calling for improved supplemental oxygen access. We also asked people to write to their members of Congress about the need for supplemental oxygen reform.

As part of PH Awareness Month, PHA marked Nov. 8 as CTEPH Awareness Day. Chronic thromboembolic pulmonary hypertension is a rare form of PH caused by blood clots in the lungs that harden over time and impede blood flow.

PHA released three videos about CTEPH this year: 10 important facts about CTEPH in English and Spanish and an interview with Mark Porter, who shared his CTEPH diagnosis and treatment journey. In addition to the videos, PHA hosted a national CTEPH virtual support group on Nov. 9.

PHA hosted several O2breathe fundraising walks during awareness month, including those on Nov. 4 in El Paso, Texas, and Monrovia, California, and the Dallas Zebra PHest O2breathe Walk on Nov. 11. Our GivingTuesday fundraising efforts on Nov. 28 also were part of PHA’s awareness month activities.

To round out the month, PHA hosted the Nov. 30 PHA Live webinar “Hope Through Research in Pulmonary Hypertension: Emerging Developments” in collaboration with Fundación Contra la Hipertensión Pulmonar, a PH organization from Spain.

KAREN TAYLOR

DAVID STOTT

TERRIE KEPLINGER

‘I live PHearlessly by staying active and engaged with my church, community activities and service with my sorority, Alpha Kappa Alpha.’

‘I have toured [the UK] three times, released two albums and met some incredible people along the way, including my wife.’

‘I walk through the forest, I climb mountains, I wade through rivers, I curl my toes on sandy beaches.’

ETHAN PARK

BEKAH CALVERLEY

MARK PORTER

‘Fishing has always been a part of my life and fishing tournaments are my passion.’

‘I love to travel, I sing in a Sydney Opera House choir, and I spend as much time at the beach as I can.’

‘Despite the challenges of CTEPH, I refused to let it define me or limit living my life.’

LAKESHIA ORR

CHLOE MERRITT

AYOTUNDE OMITOGUN

‘This summer, I not only walked up several staircases at the ancient Mayan ruin Xunantunich, but I did it for fun.’

‘I’ve found joy in exercising, nutrition and indoor gardening, while also pursuing my career.’

I ‘Live PHearlessly’ by being a selfadvocate. PH is relatively unknown and misunderstood in Nigeria, which is why I am determined to take charge of my health.

LIVE PHEARLESSLY November is Pulmonary Hypertention Awareness Month

An Author’s

‘Survival Guide’ TO LONGEVITY WITH PH 18 PATHLIGHT ISSUE 4

COVER STORY

F

or the first decade after Gail Boyer Hayes was diagnosed with idiopathic pulmonary arterial hypertension, there was no Pulmonary Hypertension Association and little information about PH. Diagnosed in 1983, Hayes is among the longest-living people with pulmonary hypertension. She authored the first three editions of PHA’s “Pulmonary Hypertension: A Patient’s Survival Guide,” the precursor to “Navigating Pulmonary Hypertension: A Guide for Newly Diagnosed Patients.”

Years before her diagnosis, Hayes experienced typical pulmonary hypertension symptoms and had a challenging pregnancy in the mid-1970s. After her daughter Lisa’s birth, Hayes saw doctor after doctor, and received multiple misdiagnoses.

In 1983, Hayes and her husband Denis moved to Palo Alto, California. In December of that year, she was correctly diagnosed at Stanford University. Because of her health, she stopped practicing law.

Although doctors at Stanford suggested a heartlung transplant, Hayes said her disease was progressing slowly enough that she believed science would develop something less drastic than a transplant. She committed to being active, convinced it would improve her wellbeing.

She got a dog, which she says weighed more than she did, and it needed to be walked.

Because information about PAH was so difficult to find, Hayes often went to the Stanford University medical school library to read every article she could find.

In 1993, the family moved to Seattle. The move was stressful, and Hayes’ heart was failing. Her heart rate rose to more than 100 beats a minute. It finally slowed, and her doctors at the University of Washington suggested a single-lung transplant.

‘I try to recall moments of joy when I’m down.

I remind myself that patients far sicker than I, and less fortunate, are still leading happy, useful lives.’

PHASSOCIATION.ORG 19

COVER STORY

‘Redwoods were around when there were dinosaurs; they’re the real long-term survivors.’

Hayes again declined transplant.

Just before moving to Seattle, she found an article in the Stanford medical school library that discussed how calcium channel blockers helped some people with PAH. Armed with that information, Hayes worked with David Ralph, MD, at the University of Washington to see how she might manage on nifedipine.

She was lucky: it kept her alive another 10 years.

FINDING HER PEOPLE

Meanwhile, Hayes saw a notice on the bulletin board in University of Washington’s pulmonary division that some people with PH had started a support group. She immediately connected with them. She also learned about PHA’s first International PH Conference and Scientific Sessions in 1994 near Atlanta.

At the conference, she met others with PH for the first time. She loved getting to know them and the doctors who devoted their careers to her rare disease. The passion within the small community was palpable.

“These are my people,” she thought.

“They understand!”

Hayes attended PHA’s first 12 conferences and frequently gave blood samples in the conference Research Rooms, knowing she was helping advance understanding of PH. GETTING INVOLVED

Hayes became good friends with Bonnie Dukart, the first person with PH to serve as PHA board president.

She jokes that Dukart “tricked her” into writing the Patient’s Survival Guide. Later, Hayes joined the PHA 20 PATHLIGHT ISSUE 4

Board of Trustees, serving from 2004 through 2007. PHA gave her the purpose she missed from her career.

Although she no longer volunteers for PHA, Hayes reads Pathlight cover to cover and skims every issue of Advances in PH to keep up on research. (She recommends the July 2023 Advances article on diet and exercise.)

She still attends PHA events, including the PHA Connects: PH Community Workshop in San Diego, where she learned about new medicines in development and connected with staff, patients and health care providers.

“Volunteering — whether it’s serving as a support group leader, answering the support line, participating in research or sharing your story — is all so valuable,” Hayes says.

TRUE SURVIVOR

Hayes chalks up her longevity with PH to luck, her own research, excellent doctors and tenacity.

She also credits her strong relationship with Denis, to whom she has been married for 52 years. When PH forced Hayes to give up her career and become dependent on Denis, they experienced relationship problems. But they found counseling and made it through.

Hayes also believes her lifestyle contributes to her health. She walks at least a mile every day and eats primarily a Mediterranean diet, with almost no red meat and no processed meat.

In 2021, Hayes moved to Santa Barbara, where Jeffrey Sager, MD, has helped her try newer PH drugs.

COVER STORY

Though she no longer has hopes of playing tennis, at age 80 she’s trying to maintain the status quo: “Just walking up the down escalator is good enough.”

She also tries to stay socially engaged. She connects with others through continuing education classes and book and writing groups.

Gail and Denis Hayes recently revisited California’s redwoods and sequoias, where they stood quietly among living things far bigger than themselves and “in many ways wiser.”

Although the Big Basin Redwoods fire of 2020 destroyed every structure and most trees, the old-growth redwoods survived and are sending out new green shoots.

“Redwoods were around when there were dinosaurs; they’re the real longterm survivors,” Hayes says.

Such experiences help her get through the challenges of PH. “We PH patients have our good days when we can almost kid ourselves into thinking we’re normal,” she says.

“Then there are those days. I try to recall moments of joy when I’m down.

I remind myself that patients far sicker than I, and less fortunate, are still leading happy, useful lives.”

PHASSOCIATION.ORG 21

VOLUNTEER SPOTLIGHT

Support Group Moderator Helps Others Find Answers

BY VICKY PETERSON

VICKY PETERSON helps moderate the Pulmonary Hypertension Association CTEPH Facebook group. She is the parent of an adult son with pulmonary hypertension. Before raising and homeschooling her children, she was an executive secretary in Utah State University’s radio-TV department. She lives on five acres in in Northern Utah, where she does volunteer work for her community.

M

y son was in his mid-20s when he was diagnosed with pulmonary hypertension. Two years later, he was diagnosed with chronic thromboembolic pulmonary hypertension.

I didn’t know about PHA in those early years. Because I had no idea what could help me, most of my support came from prayer. My son was sure I was just being an overanxious mama until his co-workers held an “intervention.” They told him he was every bit as sick as his mother believed.

Later, he fell in love with a cute nursing student who’d happened to see a former PH patient in one of her nursing classes. The patient had been cured of PH after a bilateral lung transplant.

After the nursing student married my son, she found a new PH specialist for him through the patient who had visited her nursing classroom.

That PH specialist diagnosed my son with CTEPH, which I learned was potentially curable with PTE surgery.

SURGERY SUPPORT

When my son was scheduled for surgery, I did an exhaustive search for CTEPH and PTE, and I found and joined the PHA CTEPH Facebook group. Our wonderful members literally saved this mama’s sanity during my son’s surgery and recovery.

I learned quite a bit from the members, and when I started helping others using the information I’d learned, the moderators asked me to help moderate the group.

Later, when I discovered other ways I could help, I became a volunteer 22 PATHLIGHT ISSUE 4

VOLUNTEER SPOTLIGHT

for the PHA Patient and Caregiver Support Line and as an Email PHriend.

I started volunteering in early 2018, about six months after I found the PHA CTEPH Facebook group.

Now that I’ve settled into a routine, I only help moderate the CTEPH Facebook group and volunteer as an Email PHriend.

especially since his doctors had basically told him to “suck it up and deal with it.”

SHARING HOPE

PUTTING THE ZEBRA BEFORE THE HORSE

I got involved in volunteering because I wanted to make sure that nobody ever went as long without a diagnosis as my son did. It broke my heart to watch him struggle to find answers for his rare disease, and if I can help anybody, I want to make sure I do help them.

I think the largest difference I’ve been able to make is convincing patients and their caregivers that it’s acceptable to advocate for themselves when their doctors don’t have the answers. My son went for two years before getting his PH diagnosis and another two years before he got his CTEPH diagnosis.

I don’t blame the general practitioner; PH is rare enough that most doctors have never heard of it. Too many patients are afraid to ask their doctors for more tests when doctors say they’re not as sick as they feel or attribute their symptoms to stress, being overweight, asthma, or other more well-known conditions.

PH truly is a zebra disease, and far too many doctors see the symptoms and think of a more common “horse disease.”

COMMON QUESTIONS

The most frequent questions I receive have to do with doctors not believing that people are as sick as they feel.

Sadly, even after getting a PH diagnosis,

I think the largest difference I’ve been able to make is convincing patients and their caregivers that it’s acceptable to advocate for themselves when their doctors don’t have the answers. their doctors have said that their PH wasn’t severe because their right heart catheterizations indicated only mild PH. Those patients ask me, “If my PH is so mild, why do I feel so sick? Why am I gasping for air? Why do I feel like I’m dying when I try to take a breath?” I give those patients permission to honor their bodies and what their bodies are trying to tell them.

The most surprising question I’ve received was from a patient who had just had PTE surgery to remove chronic blood clots. He hadn’t bounced back as quickly as he thought he should have, and he was very discouraged as a result,

I did the only thing I could think of: I sent him a picture that had been taken shortly after my son’s surgery. Anybody seeing the picture could see the extreme pain in my son’s face. I then told that CTEPH patient that my son was now three months post PTE surgery and feeling much better.

I asked this man to give himself three more months to let his body recover from the surgery. As I suspected would happen, he felt quite a bit better by the third month. If I had been wrong, I would have asked him to return to his doctor to see if anything else could be done.

During those three months, I regularly checked in with this man to make sure that he was, in fact, progressing through his recovery (which he was). I’m glad my son’s experience can provide some reassurance and hope for others.

Inspired by this story? Become a PHA support group leader or volunteer. PHA provides a toolkit to get started and helps you each step of the way. Apply: PHAssociation.org/ get-involved/volunteer.

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HEALTH MATTERS

Accredited Regional Programs Become Comprehensive Care Centers

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Above: Stephen Sallee, RN Below: Ashwin Ravichandran, MD 24 PATHLIGHT ISSUE 4

or the first time, two PHAaccredited Pulmonary Hypertension Care Centers have expanded from Regional Clinical Programs to Centers of Comprehensive Care. The new comprehensive care centers are Ascension St. Vincent in Indianapolis and Yale New Haven Hospital in Connecticut.

Pulmonary Hypertension Association accreditation is based on demonstrated commitment to PH patients, breadth of health care professionals involved, adherence to care guidelines and scope of services provided. While Centers of Comprehensive Care and Regional Clinical Programs both provide high quality, specialized PH care, there are slight differences between the two designations.

Centers that receive CCC accreditation differ from regional programs because comprehensive care centers provide all Food and Drug Administration-approved PH therapies and have higher patient volumes. They also contribute significantly to PH research and education.

Multiple factors contributed to the designation change for Ascension St. Vincent and Yale New Haven.

Both wanted to accurately reflect that the full spectrum of comprehensive services and PH treatment they offer meets CCC criteria.

When Ascension St. Vincent initially applied for PHA accreditation in 2018 it was just short of the patient numbers required to meet the CCC designation, says Ashwin Ravichandran, MD, director of the PH program. Four years later, the program applied for CCC designation because its talented and diligent team wanted to accurately reflect the center’s full capabilities and the comprehensive services available, Ravichandran said.

‘We can attest to the educational benefit this process had for our team and hospital system as a whole.’

ASHWIN RAVICHANDRAN, MD

“The application and site survey gave us the opportunity to look inward and really investigate the care we provide, why we provide it the way we do, and highlight those areas in which we could improve upon to further benefit our practice,” says Stephen Sallee, RN, PH coordinator at Ascension St. Vincent.

HEALTH MATTERS

and hospital system as a whole.” Says Sallee: “We take great pride in the care that we give both outpatient and inpatient in our cardiac critical, progressive and surgical care units.”

ABOUT PH CARE CENTERS

Yale New Haven Hospital’s pulmonary vascular disease team: Phillip Joseph, MD; Karelys Adorno-Loveless, MSN, RN; Hannah Oakland, MD; Inderjit Singh, MD; Marjorie Cullinan, RRT .

“The ability to then investigate further with peers from other facilities during the site survey helped to give both new perspectives and encouragement to propel our clinic to higher levels of efficiency and success.”

Similarly, Yale New Haven Hospital’s pulmonary vascular disease program applied to change its accreditation designation after meeting key care-guideline criteria and participating in groundbreaking pulmonary hypertension research through multiple, ongoing studies, says Karelys Adorno-Loveless, RN. Yale New Haven’s pulmonary vascular disease program provides thorough evaluation and treatment of PH, acute and chronic pulmonary embolism, and unexplained shortness of breath.

ACCREDITATION BENEFITS

PHA’s accreditation program benefits clinicians and patients. Both look to accredited care centers for a level of trust in the care provided, Ravichandran says. And being part of the PHCC program helps patients easily find accredited PH Care Centers through the PHA website. “We want to make ourselves accessible to anybody we can help,” he says.

Furthermore, accreditation helps PH programs stay up-to-date and accountable.

“Continuing to stay updated with best practices and having a critical, independent eye for feedback is incredibly welcome,” Ravichandran says. “We can attest to the educational benefit this process had for our team

PHA-accredited PH Care Centers are crucial to PHA’s mission of extending and improving the lives of those affected by PH. Accredited centers provide quality care based on the highest accepted standards of care and consensus guidelines. The program began in 2014 when PHA invited medical centers that treat PH to apply to become accredited.

Today, the PH Care Center network includes more than 85 centers, and about 20 programs have applied for accreditation this year.

Coupled with the PHA Registry, the centers provide data and evaluations that support the development of new drugs, updates to therapies and treatments, and ideally, the discovery of a cure.

PHA’s Quality Care initiative is a multiyear fundraising campaign that supports PH Care Centers and the PHA Registry. With your help, PHA can grow these two programs and bring the PH community one step closer to a world without PH. Support the initiative at PHAssociation.org/ quality-care-initiative.

PHASSOCIATION.ORG 25

HEALTH MATTERS

Workshops Help Attendees Manage Disease, Expectations

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imani Greg and her 9-year-old daughter Saavi were diagnosed with pulmonary hypertension in 2017. Ever since, Himani has sought the latest PH information to educate herself on best practices for her and her daughter.

“I don’t know much about how pulmonary hypertension affects children, and I want to know what the future holds for my daughter,” Greg says. “She undergoes multiple therapies, and I want to see if that’s going to be the case for the rest of her life.”

One of the ways Greg educated herself about PH was through a Pulmonary Hypertension Association regional educational workshop. In July, she attended PHA Connects: PH Community Workshop in Boston specifically to learn about pediatric PH. PHA’s community workshops help people with PH, like Greg and her daughter, as well as caregivers understand how to manage their disease. In 2024, the workshops are set for April 5-7 in Houston and Oct. 26 in Phoenix. They will follow a similar format as those in San Diego and the Boston area.

KNOWLEDGE IS POWER

Above: Saavi Greg (left) and Odin Apostoloff.

Opposite page, top right: Boston workshop attendees try out interactive technology.

Bottom left: ”Knowledge is power,” says Pamela Myers in Boston.

26 PATHLIGHT ISSUE 4

Like both previous workshops, the 2024 events will offer the opportunity to participate in support groups, including groups for the newly

HEALTH MATTERS

diagnosed, long-term thrivers and caregivers. Local support group leaders will conduct the meetings onsite.

Pamela Myers and her husband Johnie participated in support groups during the Boston workshop. Pamela was diagnosed in 2003 when fewer PH treatments were available. Since then, she has attended multiple PHA workshops to learn more about advancements in PH understanding and treatment.

“I crave having information. It’s never too much,” Pamela said. “I think knowledge is power, and being surrounded by my people and peers who understand what each other is going through is wonderful.”

Johnie said connecting with other caregivers was a blessing and he felt heard by people who could empathize.

Pamela attended a patient support group at the same time and said she felt empowered to be surrounded by compassionate like-minded people who understand what it’s like to live with PH. The Boston workshop featured sessions on pediatric PH; PAH; building a care team; diet and exercise; and new PH research.

Additionally, PHA unveiled a pilot program that used technology that allowed attendees to share experiences in real time. An interactive session with Eileen Harder, MD, used an audience response system to record and broadcast responses. Using iPads, attendees answered questions like, “When were you diagnosed with PH?” and “What PH group are you classified under?” As participants answered questions, survey results appeared as graphs on the presentation screen.

FINDING ANSWERS

Attendee Jessica Apostoloff participated in the workshop on behalf of her son Odin, who was diagnosed with PH at 2 years old.

“It’s hard to explain to him there is no cure because I always want him to remain hopeful,” Apostoloff said.

“He wants to do things that other kids are doing like play baseball or run around, and he sometimes just doesn’t understand his limitations.”

As Odin enters his preteen years, Apostoloff worries about managing

the transition from pediatric to adult care, so she attended a “Life with Childhood Onset PH” session.

“You can’t ever prepare for the complexity of care, so start earlier rather than later,” panelist Timothy Klouda, DO, said.

Apostoloff was relieved to learn that Odin’s care team would be available for pre-teen, adolescence and late teen transitions. “I was worried about how he was going to learn to take care of himself,” Apostoloff said.

Mark your calendars for for the 2024 PHA Connects: PH Community Workshops in Houston and Phoenix. PHAssociation.org/ phworkshop. For even more patient and caregiver education, join us Aug. 15-18 in Indianapolis for PHA 2024 International PH Conference and Scientific Sessions.

PHASSOCIATION.ORG 27

HEALTH MATTERS

Empowerment Through Education and Peer Support

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he Pulmonary Hypertension Association expanded its education and peer support programs in 2023 with new in-person and webbased programs. Take a look at what was new this year.

PHA CLASSROOM PHA Classroom is a library of health and wellness videos on PHAssociation.org. The videos provide expertise from PH health care professionals and insight from people with PH and caregivers. New videos are added throughout the year. Here are a few new titles from 2023: Access to up-to-date information and essential tools for daily living with pulmonary hypertension.

SIGN UP for PHA Connects newsletter to learn about new PHA Live webinars, Classroom materials and PH Community Workshops.

VISIT PHA Classroom at PHAssociation.org/ classroom to view our extensive library of videos.

FIND PHA Live recordings at PHAssociation.org/ phalive.

28 PATHLIGHT ISSUE 4

• Treating and Managing PH: What You Need to Know. Seven-part series on diagnosing, treating and managing PH, including how to find a PH specialist and participating in clinical trials.

• Understanding Pediatric PH. Eight-part series to help parents learn more about and manage their child’s PH. • Spotlight on Pulmonary Hypertension Clinical Studies and Research.

• Understanding the Side Effects of Pulmonary Hypertension Medication.

• Journey through Pulmonary Hypertension Diagnosis and Treatment.

PHA LIVE PHA Live webinars address timely topics and allow people with PH and caregivers to question PH professionals about specific issues.

We started 2023 with a PHA Live webinar to address a serious health concern for the PH community and others: “Respiratory Infections and Pulmonary Hypertension.” Other webinars included: • Pulling the Thread on Medicaid Unwinding.

• Caring for a Child with Pediatric PH. • Understanding the Connection between Idiopathic Pulmonary Fibrosis and PH. • Navigating 2024 Open Enrollment.

• Hope Through Research in Pulmonary Hypertension: Emerging Developments.

• Hope Through Research in Pulmonary Hypertension: Clinical Trials..

Have You Renewed Your Pulmonary Hypertension Association Membership For 2024?

RENEW YOUR MEMBERSHIP to continue receiving PHA member benefits, including quarterly issues of Pathlight magazine, discounted conference registration and more.

4 WAYS TO RENEW ONLINE: PHAssociation.org/Renew EMAIL: Memberships@PHAssociation.org PHONE: 301-565-3004, ext. 833 MAIL: Send your check to: Pulmonary Hypertension Association Membership 8401 Colesville Road, Suite 200 Silver Spring, MD 20910

Don’t miss out on invaluable member benefits!

PHASSOCIATION.ORG PHASSOCIATION.ORG 29

DONOR PROFILE

Former Nurse Puts Experience To Work JEN CUEVA of San Diego considers herself a proud pulmonary hypertension fighter and advocate. Her 2005 diagnosis overwhelmed her and her family until her PH specialist Richard Channick, MD, introduced her the Pulmonary Hypertension Association.

After she started connecting with others who shared her journey, she felt less alone.

“Knowing that there were people who truly understood my struggles was a gamechanger,” she says.

BY JEN CUEVA

30 PATHLIGHT ISSUE 4

DONOR PROFILE

A

s Pulmonary Hypertension Awareness Month wraps up, I’m reminded of my journey and the isolation and stress of a new PH diagnosis.

In my previous life, I was a hospice nurse. I dedicated myself to educating and supporting patients and caregivers.

My experience in hospice care helped me when I was diagnosed with PH. I knew how to advocate and communicate with medical staff. I also knew my medications, signs and symptoms, which helped me report anything unusual.

Now, I channel the passion I had for nursing to help others in the PH community by sharing my story, raising awareness, and advocating for others. My nursing background helps me connect with others from various backgrounds. My passion has always been to educate and help others. I feel I do that today, not as a nurse, but as a patient advocate, and PHriend.

BRIDGING THE GAP

Unfortunately, many medical professionals and the general public don’t always grasp the unique challenges people with PH face. As a PH advocate, my mission is to bridge the knowledge My passion has gap and raise awareness. always been to Living with a rare disease like PH can educate and help sometimes feel lonely. others. I feel I do With limited awareness that today, not as and understanding, finding support and a nurse, but as a getting the correct patient advocate diagnosis and treatment can be challenging. and PHriend.

However, connecting with other PH patients can break down the barriers and build a strong, global support community.

Living with PH means navigating through a rollercoaster of emotions and experiences. Anxiety, depression and social stigmas are just a few hurdles thrown our way due to the rarity of our condition.

Society must acknowledge and recognize the diverse experiences of individuals with rare diseases and offer them empathy and acceptance.

Advocacy is pivotal in supporting individuals with rare diseases, empowering them to research and understand their conditions better. With improved education and access to medical information, we can pave the way for better treatments and even potential cures.

My goal is to arm people with valuable resources to tackle their conditions head-on.

I’m here to help individuals and families navigate the complexities of living with PH or a rare disease. One of the ways I do that is by moderating a forum and writing a weekly column for the online publication Pulmonary Hypertension News (not affiliated with PHA).

Another way I do that is by participating in PHA advocacy campaigns and presenting at PHA conferences. I also helped create and lead the first PHkids4ACure fundraising event in Houston.

I hope that sharing my story and the experiences of others in the PH community will inspire people and help them feel less isolated.

By sharing our experiences and spreading awareness about PH and other rare diseases far and wide, we can create a brighter future for everyone impacted. To make a real difference, we must unite as a united front.

During Pulmonary Hypertension Awareness Month and beyond, let’s amplify the voices of people with rare diseases and push for real change. We can foster greater understanding and support for the entire PHASSOCIATION.ORG 31

DONOR PROFILE

PH community. Together, we can work toward creating a world that is more understanding and supportive of the PH community.

Join me on this incredible journey of raising awareness, fostering understanding, and advocating for better treatments and support for individuals with PH and other rare diseases. We can create a world where nobody feels alone in their fight against rare diseases.

Together, we are stronger, and together, we will continue to PHight for a cure. Are you in? Let’s do this!

JEN CUEVA’S TIPS TO THRIVE WITH PH Join the Pulmonary Hypertension Association, and use its valuable resources. I often refer newly diagnosed people with PH to the Find a Doctor section to ensure they receive care from a PH specialist. PHAssociation.org/patients/ doctorswhotreatph

1

A longtime Pulmonary Hypertension Association donor, Cueva recently signed up for monthly RoundUps, an online platform that allows people to round up purchases made on connected credit or debit cards. PHA receives the rounded-up donations at the end of each month.

HOW IT WORKS: • Go to PHAssociation.org/donate and select “Round-Ups.” • Securely connect your preferred card to your PHA giving account.

• Make a purchase with the connected card. Each time you swipe the card, you’re donating to PHA.

CALENDAR OF

EVENTS ■ PHA Events ■ National O₂breathe Events ■ Community Fundraising Events

VIRTUAL FUNDRAISERS Visit PHAssociation.org/pha-fundraising-events to find a fundraising event in your area.

QUESTIONS? Contact us at 240-485-0762 or events@PHAssociation.org.

32 PATHLIGHT ISSUE 4

Connect online with others within the PH community. Find a PHA Facebook support group. PHAssociation.org/community/online-andphone-support.

2

You will have good and bad days. Take advantage of the good days, and rest, and recharge on the bad days.

3

Know you are never alone. You will get through this. If anyone wants to connect, find me on Facebook and Instagram, and check out my “Worth the PHight” column online.

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DECEMBER 5, 2023 Holiday Cabaret: Stephen Carter Hicks Falls Church, Virginia tinyurl.com/pha-sch APRIL 6, 2024 PHA Connects: PH Community Workshop Houston PHAssociation.org/phworkshop AUG. 15-18, 2024 PHA 2024 International PH Conference and Scientific Sessions Indianapolis PHAssociation.org/conference OCT. 26, 2024 PHA Connects: PH Community Workshop Phoenix PHAssociation.org/phworkshop

See our calendar at PHAssociation.org/events.

QUICKTAKES Discover New Guidance on PH Related to Interstitial Lung Disease

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Community Fundraisers Connect the Community for Important Cause

L

ooking for a way to connect in 2024 with others affected by pulmonary hypertension? Consider joining or organizing a Pulmonary Hypertension Association community fundraiser. This fall, the Columbus, Ohio-area community raised $21,500 in its first PHA O2breathe walk.

The Oct. 8 event drew 143 participants, including people with PH patients, caregivers, friends, family, health care professionals and sponsors. The top fundraising teams were PHighting Buckeyes, OhioHealth and Breathing for Becca. The top individual fundraisers were Ella DuBro, Tiffani Brown and Debra Kittel.

In September, the 10th annual Puttin’ PHore Poots Golf Tournament and dinner raised nearly $30,000, a new fundraising record for the event. The Sept.

16 event in Edina, Minnesota, featured a nine-hole scramble tournament, lawn games, silent auction and raffle. The Warnberg family hosts the event in honor of Chelsea Warnberg, who was diagnosed with pulmonary hypertension in 2011. Puttin’ PHore Poots has raised more than $230,000 since 2013. Interested in hosting or attending a fundraiser in your area? Contact us at events@PHAssociation.org.

he Pulmonary Fibrosis Foundation and Pulmonary Hypertension Association released a position statement about pulmonary hypertension related to interstitial lung disease. The statement addresses gaps in screening, diagnosis and treatment, with input from experts in interstitial lung disease, PH, PH-ILD and patient representatives. More than 250,000 Americans have pulmonary fibrosis and ILD. PF, a form of ILD, causes chronic damage in the tissues of the lungs.

When PF is more severe, there is a greater chance of developing PH. Pulmonary fibrosis can have many causes, and all can be associated with PH. There are two versions of the position statement: one for health care professionals and one for patients.

Help Clinicians Learn More About PH Globally

J

oin people with pulmonary hypertension from around the world by participating in the first survey of people with PH worldwide. The survey aims to help clinicians better understand the impact of PH on patients throughout the world. The Pulmonary Hypertension Global Patient Survey is available in more than 15 languages and is designed for people of all ages, races and genders who have any type of PH. The Pulmonary Hypertension Association is working with PH organizations throughout the world to promote the Pulmonary Vascular Research Institute survey. Scan the QR code to take the survey.

PHASSOCIATION.ORG 33

PATHLIGHT

PHA’S LEGACY OF HOPE To honor those who have included PHA in their estate plans or whose legacies have been realized, PHA created the Legacy of Hope Society. PHA is pleased to recognize the following members: Laura* and Rino Aldrighetti* Alice A. Arnott* Sandra A. Awood* Dauna L. Bauer* Sylvia M. Becherer* Joan F. Bennett-Schenecker* Kris L. Best Gloria G. Blodgett* Dorothy E. Bradley* Mary M. Brady* R. J. Braun Roberta F. Browning* and Lee A. Broadbent Rita and Bruce Brundage Colleen Brunetti Stephen Carter-Hicks Colleen and Shawn Connor Jane P.* and Harold P. Cooper James F. Corbett* Nicole M. Creech Laura H. D'Anna Charles W. DeVier, III* Linda M. Feibel* Barbara T. Gamer Stacey Gausling* Franklin D. Gillespie* Jeffery S. Hall* Tammy A.* and Dean S. Hazen Carl Hicks, Jr. Phyllis M. Hill* Jackie Holt Richard L. Horrocks Constance G. Ives* Terri L. Jakuboski* Stanley T. Jusinski Laura J. Kelly* James Kenney Jessie Kohler-Wenninger Terri L. Kopp* Debbie L. and Mitchell Koppelman Frank D. Koppelman* Dee* and Walter Kruger* Gloria J. Lang* Marie* and Ronald J. Levendoski Mary Jo* and Thomas Linnen* Sally Maddox*

34 PATHLIGHT ISSUE 4

Sherry Mannel Bonnie and Michael D. McGoon Joseph W. Mihuc* Linda Miles* Karen S. Moody Larry D. Moody Pamela R. Morris Marjorie D. Mott* Joyce L. Mowrer* Pamela and Timothy O’Connor Dorothy M.* and Harry J. Olson* Theresa "Terry" E. (Cavanaugh) O'Reilly* Rita and Guy Orth Patricia R.* and Gerald D. Paton* Cynthia and John R. Pickles Jean D. Pitcher* Carol L. Powell* Frances A. Price Carol J. Posner* and Marc Priore Susan Tess Rae* Diane Ramirez Dorothy A. Ryan* James Ryan* Louise C.* and Gene P.* Salvucci Judith and Edwin L. Simpson Kelley Skumautz Joanne Sperando Marcia and Jack Stibbs Helena M. Strauch* Douglas R. Taylor Frank A. Tobac* Martha and Carlos Torres Deborah J. and Roger K. Towle Carol B. Ungar Carol E. Vreim Daniel R. Walsh* Andrea and Stephen L. White * deceased

Passages Since the Pulmonary Hypertension Association (PHA) began publishing Pathlight, “Passages” has provided a place to memorialize people with pulmonary hypertension who pass away. PHA extends its sympathy to the families and friends of these individuals and rededicates itself to its mission in their memory.

Angel Baker Patricia Boaz Frances Condora Omar G. Estevez Robert D. Findley Sharon K. Footlick Patti Garretson Randy Jansma Jon Kaufmann Winnie Lang Don Manning

George Oleson Bianca Podesta Marjorie Posner Elvy A. Proper Cynthia Sanchez Wayne Schuette Melanie Sclza James Simpson Edward K. Stock Louis P. Villanacci

The accuracy of this list is important to us. Please contact the PHA office at 301-565-3004 x746 or Passages@PHAssociation.org to share the name of your recently deceased loved one or report an error or omission.

Your donations in memory of others, in honor of others and in support of our mission mean so much to the entire PH community, and we thank you.

REACH MEMBERS OF THE Pulmonary Hypertension Association ADVERTISE IN: PHA News: Biweekly patient-focused e-newsletter PHAssociation.org: Comprehensive resource for anyone affected by PH Pathlight: PHA’s quarterly member magazine For more information, contact: Advertising@PHAssociation.org

PHASSOCIATION.ORG PHASSOCIATION.ORG 35

PULMONARY HYPERTENSION ASSOCIATION 8401 COLESVILLE ROAD, SUITE 200 SILVER SPRING, MD 20910

The IMPAHCT Study is looking at an investigational medication for pulmonary arterial hypertension (PAH). ©2022 Aerovate Aerovate Therapeutics, Therapeutics, Inc. ©2023 Inc. All All rights rights reserved. reserved.