2022 PHA Annual Report

20 REUNITED 22 To PHace the Future PHA ANNUAL REPORT

OUR MISSION is to extend and improve the lives of those affected by PH. OUR VISION is a world without PH, empowered by hope.

2 PHA Annual Report | 2022

Letter from Leadership

W

Matt J. Granato, LL.M., MBA President and CEO Pulmonary Hypertension Association

Tony Lahnston Board of Trustees Chair Pulmonary Hypertension Association

e’re pleased to share with you the Pulmonary Hypertension Association 2022 Annual Report. The report reflects PHA’s achievements in a year when the world began to emerge from pandemic isolation and embrace everyday activities.

For the PHA community, 2022 marked a return to face-to-face connections with family, friends, caregivers and health care providers. Our community resumed in-person support group meetings, health appointments, fundraising events and educational workshops. The events resumed with strong measures to reduce the risk of virus transmission and keep our community healthy. Some support group meetings and events continued virtually or provided hybrid options for people who chose to participate online.

The draw to reconnect in person and “PHace the Future Together” was undeniable.

Hundreds traveled to Atlanta for PHA 2022 International PH Conference and Scientific Sessions. PHA 2022 brought the community together for the first time in four years, reenergizing patients and professionals alike.

Similarly, people turned out for fundraising events throughout the U.S., reconnecting with friends, establishing new connections and raising money to support PHA’s mission.

Those in-person activities — so vital to the health, wellbeing and care management of the PH community — have been foundations of PHA’s work since its inception. The 2022 annual report acknowledges PHA’s ongoing commitment to extend and improve the lives of those affected by PH. The report demonstrates our impact through research, education, support and advocacy as well as personal stories from people with PH, caregivers and PH professionals.

We frequently hear from the PH community about the impact we make through our support services, outreach, education and personal connections, and 2022 was no exception.

Our achievements last year and every year reflect the hours of service by the many people who lead support groups, answer calls on the patient support line, write to elected officials, and host and participate in fundraising events.

We also owe our success to our corporate partners; the PH professionals who serve on our committees and share their expertise in conference, workshops and webinars; and the volunteers who serve on our Board of Trustees.

Last, and certainly not least, we could not do it without a team of very skilled and dedicated professionals working at PHA. Since the pandemic, PHA went “virtual,” with staff all over the country, increasing diversity of thought and ideas and representing the many communities that make up our constituents.

We also solidified our core values — commitment, respect, effective and open communications, and compassion and empathy — that define who we are as a team and how we relate to each other and our members. Just like our community of patients, caregivers and healthcare professionals, we emerged from the pandemic stronger and more resilient, ready to resume and face the challenges that come our way.

Thanks to all who help us educate, engage and support the PHA community.

Matt J. Granato, LL.M., MBA

Tony Lahnston PHA Annual Report | 2022 3

PHA

AT A GLANCE IN 2022

ADULT RCP PROGRAMS ADULT CCC PROGRAMS PEDIATRIC CCC PROGRAMS

Adult RCP programs

2,104 Members 3,544 Donors

Adult CCC programs

Pediatric CCC programs

370 Members

2,000 Patients

OF PH CLINICIANS AND RESEARCHERS

ENROLLED IN PHA REGISTRY

82 Accredited

865,341

CARE CENTERS

WEBSITE PAGE VIEWS

OF PH PROFESSIONAL

83% Care Centers

48,100

NETWORK

PARTICIPATING IN PHA REGISTRY

SOCIAL MEDIA FOLLOWERS

393 Members

4 PHA Annual Report | 2022

A Visionary’s Dream Realized

R

ino Aldrighetti, who led the Pulmonary Hypertension Association for nearly two decades, died in May 2022 from brain cancer.

“Rino was a dreamer and a visionary,” says Colleen Brunetti, immediate past chair, PHA Board of Trustees.. “Status quo was never enough. He was forever coming up with new innovative ideas for PHA to grow and increase our impact.”

Aldrighetti, the first PHA employee, was hired in 1999 as part-time executive director.

He soon became full-time and later was promoted to president and CEO. He retired in 2016 after PHA’s International PH Conference and Scientific Sessions.

“Rino was in it not for the job, nor to establish a career, nor even to create an exemplary organization,” says Michael McGoon, MD,” a member of PHA’s Scientific Advisory Committee (now Scientific Leadership Council) since its 1992 inception.

“Rino was in it because he clearly saw that the potential of this patient-centric organization grounded in clinical science. He knew PHA could do something meaningful for patients.”

Tall with a commanding but friendly personality, Aldrighetti shepherded PHA from a small grassroots organization to the largest pulmonary hypertension organization in the world. Under his leadership, PHA became a professionally staffed organization, rapidly expanding the organization’s fundraising, budget and services.

“When you think of this period in PHA’s development, I hope that you will think that I tried my hardest to lead this organization with integrity and a deep and abiding desire to change the history of this disease for the good of patients,” Aldrighetti said in his retirement speech at PHA 2016.

PHA’s PH Professional Network Symposium not long after she was diagnosed. She related her challenges in trying to reach her specialty pharmacy about medication delivery problems.

“Rino picked up his phone and dialed that contact directly,” she recalls. “In that moment, I knew we had the most fierce and caring advocate as the head of PHA, and we were so lucky.”

EMBRACING RESEARCH

Described as a risk taker, Aldrighetti embraced and supported initiatives to improve access and quality of PH care, fund research and build a vibrant support group network. He opened PHA’s first Silver Spring, Maryland, office and hired its second employee.

“He embraced support for research to improve the lives of PH patients and rose to the challenge of fundraising,” says Greg Elliott, MD. Aldrighetti supported the Research Room at Conference and embraced the idea of creating a network of accredited PH care centers modeled after a Cystic Fibrosis Foundation program, Elliott says.

Aldrighetti’s many accomplishments included PHA’s launch of Advances in Pulmonary Hypertension, the first medical journal dedicated to PH. He also was committed to expand PHA’s culture globally. He recognized that each country or region incorporate PHA’s ethos of concern for patients and worked with representatives in other countries to build a network of PH organizations worldwide, McGoon says. His passion for international collaboration led to the 2010 establishment of the International Leaders Summit at PHA’s conference.

FIERCE, CARING ADVOCATE

Brunetti realized Aldrighetti’s commitment to people with PH when she met him at PHA Annual Report | 2022 5

Building a Brighter Future Through Awareness Efforts

T

he Pulmonary Hypertension Association works year round to generate awareness of pulmonary hypertension.

We use social media, web articles, digital newsletters, webinars and our member magazine Pathlight to promote various awareness campaigns. In 2022, we shared information about the benefits of early diagnosis, PH risks and the impact of PH around the world. We reached out to people with PH, caregivers, health care professionals and the public. Raising awareness around PH brings us one step closer to our mission to extend and improve the lives of those affected by PH.

Parliament. In the meeting, PHA Europe unveiled its “Unmet Needs of Patients with Pulmonary Hypertension.” The call to action urged policymakers to share PH knowledge and expectations among diverse stakeholders and across geographic boundaries.

This meeting was the flagship event of the MEP Lung Health interest group and a collaboration with other lung disease-focused patient organizations and the European Respiratory Society. PHA values international collaboration and looks forward to expanding international collaborative efforts in years to come.

WORLD PH DAY

PH AWARENESS MONTH

Each November, PHA celebrates Pulmonary Hypertension Awareness Month. Our 2022 PH Awareness Month theme was “PHacing the Future Day by Day,” which was reflected in our awardwinning interactive calendar. The online calendar revealed a new fact, tip or downloadable resource about PH each day.

Awareness Month featured several distinct days of recognition, including Chronic Thromboembolic Pulmonary Hypertension Day on Nov. 9, Advocacy Day of Action on Nov. 17, and GivingTuesday on Nov. 29.

INTERNATIONAL COLLABORATION

PHA had the unique opportunity to participate in an international call-toaction event in April 2022. PHA President and CEO Matt Granato joined PHA Europe for a meeting with the European

6 PHA Annual Report | 2022

May 5, 2022, marked the start of World Pulmonary Hypertension Day, an annual global event to raise awareness about PH. PHA’s focus was “Pulmonary Hypertension Has No Borders,” which emphasized that PH can affect anyone regardless of age, race, sex, social or ethnic background, no matter where they live.

Throughout May 2022, we shared graphics and facts that detailed the signs, symptoms and risks of PH worldwide.

We used #WorldPHDay2022 for World PH Day social media posts.

RIGHT HEART BLOG

One way PHA raises PH awareness year-round is by sharing the stories from the PH community. In 2022, nine people shared their stories in PHA’s Right Heart Blog. The Right Heart Blog not only spreads PH awareness, but gives hope to those affected by PH. Featured stories included anecdotes on living with PH

– BY THE NUMBERS –

GETTING THE WORD OUT and awaiting a lung transplant, being a Zumba instructor, having PTE surgery and caring for a young child with PH.

22,657

48,100

PHA NEWS SUBSCRIBERS

SOCIAL MEDIA FOLLOWERS

22,086 CLICKS ON PHASSOCIATION.ORG

RARE DISEASE DAY AND ASSOCIATED DISEASES

PHA joined the National Organization of Rare Disorders in February 2022 to raise awareness for Rare Disease Day. Rare Disease Day aims to generate change for 300 million people worldwide who have rare diseases, their families and caregivers.

NORD’s “Show Your Stripes” campaign encouraged the rare disease community to share what makes them rare.

In addition to Rare Disease Day, PHA used social media and digital newsletters to recognize multiple conditions related to PH. PHA spreads awareness for congenital heart disease, sleep apnea, sarcoidosis, lupus, HHT, scleroderma, pulmonary fibrosis and sickle cell disease.

COMMENTS, LIKES AND SHARES ON SOCIAL MEDIA PLATFORMS

PHA CONNECTS SUBSCRIBERS

PH AWARENESS MONTH

331,655 SOCIAL MEDIA IMPRESSIONS

6,212 COMMENTS, LIKES AND SHARES ON FOUR SOCIAL MEDIA PLATFORMS

4,650

PHA LIVE

PHA Live is a webinar series that allows the PH community to hear from experts on health, wellness, science and research topics. We promoted eight PHA Live webinars in e-newsletters, including PHA News and PHA Connects, and on social media prior to the event. Additionally, we shared recordings of each webinar after the fact. The eight PHA Live webinars had 537 attendees and covered the relationship between PH and hereditary hemorrhagic telangiectasia, a four-part series on navigating the Medicare open enrollment period, and an update on PH research from leading experts.

72,600

6,541

VIEWS OF AWARENESS MONTH WEB PAGES

WORLD PH DAY

530,868

5,953

SOCIAL MEDIA IMPRESSIONS

SOCIAL MEDIA ENGAGEMENTS

2,627 VIEWS OF WORLD PH DAY PAGES

PHA Annual Report | 2022 7

PHA 2022 A Celebration of In-Person Connections and PH Education

M

ore than 1,000 people participated in the Pulmonary Hypertension Association’s first major in-person event since the COVID-19 pandemic began. PHA 2022 International PH Conference and Scientific Sessions brought together people with pulmonary hypertension, caregivers, health care professionals, corporate partners and PHA staff. The June 9-12, 2022, event featured an option to stream select education sessions for those who couldn’t attend in person.

In Atlanta, attendees celebrated the first opportunity to reconnect in person in four years. The theme, “PHacing the Future Together,” acknowledged the ability to come together amid the challenges of PH. The conference opened with a welcome video featuring Beth and Tony DeCristofaro, Shavini Fernando, Betsie Miklos and Denise Lewis, RN. The video won a second-place 2023 EXCEL award from the Advertising, Media and Publications Network for best promotional video.

Keynote speaker Marcie McGregor welcomed attendees and shared the story of her initial misdiagnosis, selfadvocacy efforts and her volunteer work.

McGregor, a member of PHA’s Support Group Leader Advisory Board, leads PHA’s Augusta, Georgia, support group.

JOURNEYS LUNCH

A popular feature of PHA conferences is the Journeys lunch, where pairs of patients and care team members share their stories. Michelle Liu, MD, MPH, 8 PHA Annual Report | 2022

FAAOH, and Stephen Walker, MS, CRNP discussed Liu’s daughter Esther’s diagnosis and care journey.

Allison Dsouza, BSN, RN, and Elizabeth Colglazier, MS, NP, recounted Dsouza’s journey from PH diagnosis to registered nurse, including job shadowing under Colglazier. Kimberly Jackson, RN, and Evelyn Mitchell recounted Mitchell’s diagnosis story and how their partnership inspired Jackson to continue treating people with PH. PATIENT AND CAREGIVER EDUCATION

Throughout the event, medical professionals, patients and caregivers presented education sessions on new therapies, exercise and pulmonary rehab, CTEPH, self-care, intimacy, getting involved in PHA and finding your voice.

MEMBER RECOGNITION

PHA presented Outstanding Member Awards to seven people who go above and beyond to support and advocate for the PH community. The winners: • Julie Paton Hendry Memorial Scholarship: Betty Lou Wojciechowski.

• Outstanding Physician: Steven Kawut, MD, MS. • Outstanding Allied Health Professional: Fran Rogers, CRNP. • Outstanding Young PH Citizen: Jackson Wall.

• Outstanding PH Citizen Award: Chloe Temtchine.

• Outstanding Caregiver: Sadie Ruiz.

• Outstanding PHA Support Group Leader: Betsie Miklos

RESEARCH UPDATE

CLOSING SESSION

During the medical update dinner, Todd Bull, MD, and Stephen Mathai, MD, MHS, discussed “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics.” The multicenter study, which aims to identify biomarkers to improve PH diagnosis and treatment, is funded by PHA and the National Institutes for Health National Heart, Lung, and Blood Institute.

During the June 12 closing brunch, performer and PH advocate Stephen Carter-Hicks treated attendees to two special performances. After performing “You’ll Never Be Alone” by Gerry and the Pacemakers, Stephen recounted stories from his Broadway career, PH diagnosis and how he copes today. He then performed “Keep Hope Alive,” a song composed for him to sing at PHA 2020 before it was canceled because of the pandemic.

PHA 2022 ended with the passing of the gavel to new PHA Board of Trustees chair Tony Lahnston and a wrap-up video, which won a first place 2023 EXCEL award from the Advertising, Media and Publications Network.

SCIENTIFIC SESSIONS

As patients attended breakout sessions related to life with PH, health care professionals attended sessions with a scientific focus. Themed, “Vision for the PHuture: The Evolving Science and Management of PH,” the scientific sessions focused on PH research, as did lightning-round presentations of research topics selected for the Poster Hall. At industry-sponsored sessions, patients and health professionals learned about state-of-the-art technology and other PH advancements.

FASHION SHOW AND CLOSING PARTY

The Saturday Night Party and Fashion Show celebrated how people with PH conceal or highlight their oxygen cannulas, mobility devices and medication pumps. Emceed by PHA board members Doug Taylor and Nicole Creech, participants modeled outfits in four categories: formal wear, PH pride (zebra print and periwinkle), sports and superheroes. After the fashion show, attendees celebrated with dancing, games and photo booths.

PHA Annual Report | 2022 9

Grassroots Volunteers Inspire Action

T

he Pulmonary Hypertension Association leveled up its advocacy program in 2022 with new opportunities for grassroots engagement, including a 10-member Advocacy Committee.

The Advocacy Committee includes people with pulmonary hypertension and health care professionals. The committee provides direction on new ways to increase grassroots involvement and build skills for facilitating legislative meetings.

CONGRESSIONAL OUTREACH

In recognition of World PH Day in May, four groups of advocates led by members of the Advocacy Committee met with congressional offices.

Bolstered by a successful advocacy challenge during the PHA 2022 Conference, PH advocates sent more than 1,600 messages to their legislators, the most since 2017.

SUPPORT GROUP LEADER INSPIRED TO ADVOCATE

BY NANCY ZEPPA

M

y pulmonary hypertension journey began in the summer of 2019. After a bumpy start with doctors, I found my PH team at Penn Presbyterian Hospital in Philadelphia. My life changed after my doctor told me I wasn’t going to die and I found the Pulmonary Hypertension Association and its support groups.

As a PH patient, you learn something new every day — sometimes from your own body and sometimes from your

10 PHA Annual Report | 2022

medical team. Mostly, it’s from my fellow PHighters. We are small, but we are strong.

Last summer, my South Jersey Support Group leader Bonnie Patricelli asked me to co-lead our support group.

I accepted without hesitation. I have learned, shared and received support and have been saddened and amused by my fellow support group members. Now, in addition to leading the South Jersey Support Group with Bonnie, I’m also a

PHA also rekindled its Advocacy August campaign, which connected advocates with congressional offices online and in person.

Advocates urged members of Congress to support legislation to decrease barriers to treatment access and protect charitable assistance, and Congress listened. The Safe Step Act received nearly 200 co-sponsorships by the end of the year, and the Help Ensure Lower Patient Copays Act gained momentum in the House of Representatives.

PHA also focused on improving access to supplemental oxygen, a critical issue for many people with PH. The groundwork laid in 2022 will lend strength to PHA’s advocacy efforts in coming years to ensure accessible, affordable treatment for people with PH.

member of PHA’s Patient and Caregiver Education Committee.

Inspired by the knowledge from my support group, I attended PHA 2022 International PH Conference and Scientific Sessions in Atlanta. It was my first PHA conference. I decided to go to get more involved in PHighting for all of us. At the conference, I spent some time with Katie Kroner and Jaeger Spratt from PHA’s advocacy team. I now had no excuse not to get involved.

All of us struggle daily with many issues, like affording medications or insurance companies requiring us to switch to generics. When an important bill is written in Congress or the state legislature, it’s just words on paper until we voice why these issues are important and how they impact our lives.

PATTI SAKOMAN PH patient and support group leader

– BY THE NUMBERS –

440

1,631

274

ADVOCATES

MESSAGES TO CONGRESS

TREATMENT ACCESS INQUIRIES RESPONDED TO

When PHA sent out an email about Advocacy August, I completed the form and sent it off to PHA. Jaeger responded and started me on my first — and I assure you — not my last advocacy meeting. I practiced with Jaeger before we scheduled meetings with legislative staffers to make sure I was comfortable. PHA sent me a packet that summarized PH legislative priorities. Jaeger’s coaching and the legislative materials gave me the confidence to speak about these subjects.

In my meetings, I talked with staff members from the offices of Sens. Robert Menendez and Corey Booker and Rep. Andy Kim. It was an honor to advocate and inform legislators about PH, the PH community and the struggles we live with every day.

The day after our call with Hilary Caron from Kim’s office, we received an email to let us know the congressman agreed to sign on as a co-sponsor of the HELP Copays Act. It actually feels like I made a difference.

PHA Annual Report | 2022 11

Addressing Barriers to Accessible, Appropriate Care

T

he start of 2022 was a challenging time for the pulmonary hypertension community. Many patients struggled to find financial assistance to help them pay for their life-saving medications.

In the first few weeks of the year, the Pulmonary Hypertension Association responded to more than 100 treatmentaccess inquiries. After the first financial assistance fund of the year opened, PHA made more than 70 follow-up calls to ensure patients knew about and could access the fund, including people without internet access. Many patients expressed gratitude at PHA’s personal touch.

PHA addressed another pain point

for the PH community: quality of service from specialty pharmacies. In March, health care providers responded to an extensive PHA survey that explored shifts in specialty pharmacies’ performance.

The survey asked about many aspects of service for patients and health care professionals. PHA presented the feedback to major specialty pharmacies so they could make internal changes to improve the patient experience.

Throughout 2022, PHA’s worked to address issues related to medication pumps for subcutaneous treprostinil.

One problem was that some people encountered “no disposable” alarms in CADD Legacy pumps even when medication cassettes were correctly

loaded. PHA’s advocacy work spurred further investigation from the manufacturer and ultimately led to a recall of select pump lots.

PHA and its Scientific Leadership Council also worked to understand and address shortages of CADD MS3 pumps, which were in short supply because of supply chain disruptions.

PHA worked with specialty pharmacies and manufacturers, eventually crafting guidance for health care professionals.

PUTTING CUSTOMER SERVICE SKILLS TO WORK FOR PATIENTS

H

ealth care is Danielle Burkett’s second career. After her mother became ill, Burkett decided to leave her office manager job and return to school. She wanted to use her knowledge and customer service experience to work with patients.

Today, she’s a certified medical assistant at Duke University Hospital’s Pulmonary Vascular Disease Center for the past eight years. She works with insurance companies and specialty pharmacies to get pulmonary hypertension medication approved for her patients. She also helps patients get financial assistance for the expensive

12 PHA Annual Report | 2022

medicine. In 2022, she presented a fourpart webinar series on open enrollment for the Pulmonary Hypertension Association.

Burkett says her favorite part of the job is being able to let patients know their treatment coverage was approved.

“It feels like a puzzle to solve,” she says.

“I have the network and resources to find creative solutions for a patient who has been struggling to access the treatment they need.”

“If even one person can go back to their care team and get the treatment they need because of the knowledge I’ve shared here, it will have been a huge success,” she says.

In-Person Support Returns as Online Meetings Take Root

P

atient and caregiver support has been a Pulmonary Hypertension Association priority since our inception.

We started offering patient support in 1991, the year PHA began, and thousands of people with pulmonary hypertension have found support and connections ever since.

In the early months of 2022, PHA offered only virtual support group meetings. The online meetings allowed people from anywhere in the U.S. to find support and comfort amid ongoing isolation from the COVID-19 pandemic.

In March, PHA conducted a large, national meeting led by social workers. The social workers provided strategies to cope with isolation, caregiver burden, risks and stressors related to returning to in-person medical care.

From there, PHA gradually transitioned to in-person support activities. Beginning in March 2022, PHA began offering inperson, virtual and hybrid support options to meet the needs of those who wanted to meet in person and those who weren’t ready.

In a unique pilot project to connect people who have PH and associated conditions, PHA worked with Cure HHT to start a community Facebook group for those with PH and HHT.

PHA Annual Report | 2022 13

– BY THE NUMBERS –

PEER SUPPORT

375 SUPPORT GROUP MEETINGS

2,536 SUPPORT GROUP ATTENDEES

1,681 SUPPORT LINE CALLS

VOLUNTEER TRAINING

PHA provided “support the supporter” training and networking opportunities for our 300-plus peer support volunteers.

In September, PHA conducted a regional in-person support group leader training in Louisville, Kentucky. Nine leaders attended, representing six support groups from Ohio, Kentucky, Michigan and Indiana. This day of educational and networking activities covered planning, advertising and running support group meetings.

Leaders discussed crucial aspects of support group meetings, such as respecting confidentiality, making attendees feel welcome and supported, giving everyone a chance to share, handling difficult situations and providing education or new information.

In addition, the PHA 2022 International PH Conference and Scientific Sessions offered a networking event just for volunteers.

The volunteers met and mingled with each other and with PHA staff. By bringing together hundreds of patients and loved ones from around the country, PHA 2022 also hosted support group meetings for long-term thrivers and family caregivers.

4,857 FACEBOOK SUPPORT GROUP MEMBERS

VOLUNTEER PARTICIPATION

317 VOLUNTEERS

72 PHA EMAIL PHRIENDS

245 SUPPORT GROUP LEADERS

Joining a support group and now being a support group leader has helped me find my best new normal. What I have learned from the speakers and from the group members has helped me be successful in my endeavor to be as healthy as possible.

LES FREEMAN | Bend, Oregon

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PANDEMIC INSOLATION INSPIRES NEW SUPPORT GROUP

BY DEBBIE KITTEL

I

connect with many patients on a personal level as I care for them during their journeys with pulmonary hypertension. One of them, Tiffani Brown, inspired me to become more involved.

Throughout the pandemic, I saw how isolating it was for her to be home, unable to work. Because of her parenteral therapy, she was at high risk of serious COVID-19 complications. It was heartbreaking to watch such a young, lively, bubbly person stay in bed all day.

I tried finding ways to get her out of the house (mostly by walking my dogs), and I can’t believe the difference in her morale and mental health. While walking the dogs and talking to her, I realized how much our area needed a PH support group.

Patients need a mental health outlet, and our support group has given many people the push they needed to be more social. Tiffani helped set up our group and inspires me to help other patients like her. She has given back to me as much as I have given to her.

Another motivation to start a PHA support group was the misinformation about PH on social media. I want our

patients to know what we advocate for and what we don’t. I want patients to understand the medications, what a halflife is, how you can still live an active life with PH, and how to keep yourself out of the hospital. After one meeting, I was totally hooked.

The response to the OSU support group has been overwhelming. Our group

takes a very positive approach to PH, and patients say it helps them recognize they can live a full, active life. Health care providers are present at every meeting, which helps our patients know we are committed to helping them achieve their best life.

For me, the most rewarding part of being a PHA support group leader is seeing what a vital service we are providing to patients with a rare disease.

Patients, family members and friends are so enthusiastic about our group because they feel a need to meet and socialize with others who share their concerns. and issues. The support group provides a safe space for that.

Debbie Kittel of Gahanna, Ohio, leads a Pulmonary Hypertension Association support group at The Ohio State University, where she is the pulmonary arterial hypertension nursing program manager.

I connected with PHA’s Generation Hope support group shortly after my diagnosis. So many amazing people share their stories of victory and tribulations. I’ve learned resilience and not to feel sorry for myself. I want other young people to know that they aren’t alone, and they don’t have to be defined by this disease.

MESHA GUILLOTY | Charlotte, North Carolina

PHA Annual Report | 2022 15

Empowering the PH Community Through Education

T

he Pulmonary Hypertension Association’s commitment to helping the PH community thrive took on an innovative approach in 2022 while incorporating familiar programming. PHA’s patient education team provided virtual and in-person programming through PHA Live Webinars, the PHA Classroom e-learning library and a much-anticipated in-person community workshop. These opportunities empowered people with PH to advocate for themselves, learn more about PH and connect.

After a three-year hiatus, PHA On the Road resumed in September 2022 in Louisville, Kentucky. Organized with local PHA-accredited care centers, the event was chaired by Kimberly Jackson, BSN, RN, and J. Wesley McConnell, MD. The free daylong educational workshop provided opportunities for learning, networking and support for patients and caregivers. PHA On the Road was renamed PHA Connects: PH Community Workshops in early 2023.

As part of PHA’s efforts to empower patients, PHA created a Patient and

Caregiver Education Committee, which merged PHA’s physician and allied health care professional education committees and added patients and family members.

The change will help ensure PHA’s educational resources are relevant and accessible for people with PH and their families. The committee creates, reviews and edits new and existing educational resources.

Also new in 2022: A partnership with Cure HHT, an organization that raises awareness of hereditary hemorrhagic telangiectasia. HHT can cause pulmonary hypertension, and about 13% of people with HHT have at least mildly elevated pulmonary artery pressures.

PHA’s “PH and HHT: Signs, Symptoms and Disease Management,” webinar drew a record attendance and spurred lively discussion. The partnership also lead to a new PHA Facebook support group: PH and HHT. Other popular webinars in 2022 included a four-part webinar series about the open enrollment process for health care insurance.

Pulmonary hypertension is such a difficult and challenging disease for patients. The symptoms can be debilitating and the treatments complex. PHA On the Road is a fantastic opportunity for patients, family and caregivers to learn more about their disease process from experts in the field as well as meet others with the same condition.

KIMBERLY JACKSON, BSN, RN | University of Kentucky

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PHA: ‘PRIMARY SOURCE’ OF PH INFORMATION

BY MICHELE LIU

I

I feel very blessed to have the perspectives of caregiver and medical professional in the PH community because I know how much I can push to advocate for my daughter.

feel very blessed to have the perspectives of caregiver and medical professional in the PH community because I know how much I can push to advocate for my daughter. There are so many challenges when it comes to communicating for your health; I believe that medically challenged families become experts at pushing to get the care that they need.

Esther’s story is more than a miracle; it is navigation of a course. I let people know there is a lot they can do with the information they receive. It all comes down to decision-making and exploring available resources.

Despite my medical background, I was uninformed about pulmonary hypertension. When I looked online to find out more information, I discovered the Pulmonary Hypertension Association.

I relied heavily on PHA as my primary source of information while my family and I navigated the first three months

of Esther’s intensive care. Through its resources, PHA gave me a “crash course” on PH that helped me learn more about Esther’s diagnosis. I also found the PHA Facebook support groups, which helped me find support for myself and my family.

I support PHA because of its resources and quality programs dedicated to advancing PH education, research and clinical care. I’ve met some wonderful PHA leaders who have given me a voice.

Michelle Liu’s daughter Esther was 2 when she had a heart attack and was diagnosed with pulmonary arterial hypertension.

Liu, MD, MPH, FAAOA, a physician and Pulmonary Hypertension Association board member, shared her family’s PH journey at PHA 2022 International PH Conference and Scientific Session Journeys Luncheon.

– BY THE NUMBERS – PATIENT AND CAREGIVER EDUCATION PROGRAMS

9

15

WEBINARS

PHA CLASSROOM VIDEOS

437

NAVIGATING PULMONARY HYPERTENSION ORDERS

1,076

1,293

DOWNLOADED

MAILED

WEBINAR ATTENDANCE

PHA Annual Report | 2022 17

New Era of Professional Education

O

ne of the crucial ways the Pulmonary Hypertension Association promotes quality patient care is by providing medical education to health care professionals.

PHA offers several programs and resources to improve the knowledge and skills of doctors, nurses, pharmacists and other professionals who treat and manage patients with pulmonary hypertension. Those programs equip health care professionals with the latest research and technology to enhance patient care. In 2022, more than 2,700 health care professionals participated in PHA’s professional education programs.

PHA has two accredited continuing medical education programs: PHA Online University and PHA Medical Education On-Demand. PHA Online University offers online courses that are

available 24/7. The courses are taught by experts in treating and managing PH care.

The Medical Education On-Demand program provides a unique opportunity for health care providers to tailor professional education to their needs. They can choose from eight PH presentations by 60 expert faculty members and schedule the courses at their convenience.

RE-ENERGIZING PROFESSIONAL EDUCATION

One of the most exciting education opportunities for PH professionals is the PHA International PH Conference and Scientific Sessions. Those professionals came together in person for the first time in four years at PHA 2022 in Atlanta, not only to learn but also to connect and network.

Over two days, health care providers participated in sessions that reflected the theme, “Vision for the PHuture: The Evolving Science and Management of PH.” The Scientific Sessions also featured for the first time a joint session with the Pulmonary Vascular Research Institute. PHA used the momentum from the conference to begin planning PHA’s 2023 PH Professional Network Symposium.

PEER-TO-PEER LEARNING

PHA empowers health care professionals to provide the best quality care through support and mentorship. In 2022, PHA expanded what previously was the PHPN Mentorship Program and revamped it to include physicians and researchers in addition to nurses and allied health professionals. The program matches mentees with experienced peers who provide guidance and expertise on a variety of topics.

That guidance could address advice about PH treatment, care and research, as well the PH Care

18 PHA Annual Report | 2022

Center accreditation process or the roles and responsibilities of a PH coordinator.

Members of PHA’s professional networks have access to the PH Practice Library, a collection of practical protocol examples, patient education materials and other resources. The PH Practice Library helps clinicians make the most of their time with patients and determine best practices for their care centers.

Giving health care professionals the knowledge and tools that allow them to provide the best possible care to patients is the focus of PHA’s medical education programs. By empowering the people who directly treat patients, PHA promotes quality patient care throughout the PH community.

– BY THE NUMBERS –

15,229 ADVANCES IN PULMONARY HYPERTENSION SUBSCRIBERS

417 CME CERTIFICATES

MENTORSHIP SPURS LONGTIME COLLABORATION Rebecca Cox, FNP-C, was working at a practice where she was the only advanced practice provider caring for people with pulmonary hypertension. She applied for PHA’s mentorship program so she could benefit from the experience of other professionals. Having a mentor allowed her bounce ideas off an expert from a PHA-accredited PH Care Center and get a feel for how the center handled specific situations.

“Not only did I grow in my knowledge of pulmonary arterial hypertension, but I also developed a professional relationship with my mentor,” says Cox, who still collaborates with her mentor about patients her clinic refers for lung transplant, even after the formal mentorship period.

Cox says her patients have benefited from the mentorship program because they received the highest level of care.

“Even if they didn’t know it, we were working together behind the scenes years after the mentorship ended,” she says.

1,518 ENROLLED IN ONLINE UNIVERSITY COURSES

17 NEW ONLINE UNIVERSITY COURSES

PHA Annual Report | 2022 19

PHA’s PHCC Program: A Common Vision for Quality Care

T

he Pulmonary Hypertension Association’s accreditation program and registry are cornerstones of our research and quality patient care strategies.

PHA promotes quality patient care through PHA-accredited PH Care Centers. The PH Care Center network aims to increase access to specialized PH care, enhance health care provider and patient education, secure earlier diagnosis, and improve patient outcomes.

PHA-accredited care centers provide quality care based on the highest accepted standards of care and consensus guidelines. This focus reflects PHA’s mission to extend and improve the lives of those affected by PH. NEW ERA OF PH CARE

In late 2022, PHA and the Pulmonary Hypertension Care Centers Inc. boards voted to integrate the two organizations.

The move combines and enhances the strengths of both organizations to benefit PH patients and health care professionals.

The merger also is expected to improve efficiency and increase opportunities for collaboration.

PHA and PHCC have worked together with a common vision since 2014 when PHA invited medical centers that treat PH to apply to become PHAaccredited PH Care Centers. PHA will continue to invest fully in the accreditation and registry programs as it has in the past.

Combining our strengths will bring added benefits to PH Care Centers.

From a practical point of view, nothing changes operationally for the accredited centers and those participating in the PHA Registry. Specifically, the care centers will continue to receive the same level of quality and personalized service from PHA staff and the University of Washington’s Data Coordinating Center.

Accreditation cycles, reviews and criteria within PHCC remain the same.

As part of our commitment to quality patient care, PHA focused on expanding our accreditation program to geographic regions where patients don’t have easy

access to accredited PH Care Centers.

By the end of 2022, PHA had received and was evaluating 13 new accreditation applications.

To be accredited, medical centers are reviewed to ensure they have the resources necessary to treat all forms of pulmonary hypertension. Those resources include a cohesive medical team, verification that diagnoses are made correctly and appropriate treatment started, and explicit institutional support for the PH program.

PHA REGISTRY

The PHA Registry measures quality patient care and outcomes to support PHCC reaccreditation, provides care improvement initiatives and fosters PH research. Over time, the registry has grown from five pilot sites to 68 in 2022.

More than 2,000 patients were enrolled in the registry in 2022.

In 2022, researchers initiated more than 30 new research studies and published six peer-reviewed research papers based on registry data.

– BY THE NUMBERS – PHA-ACCREDITED SITES

82 CARE CENTERS (TOTAL)

20 PHA Annual Report | 2022

COMPREHENSIVE CARE CENTERS

REGIONAL

14

ADULT

60

PEDIATRIC

8

Our Financial Commitment To PH Research

P

HA has been dedicated to supporting research since its early days as an association. To support research, we offer a number of research grants. We launched three new research grants in 2022, increasing our grant commitment by 70%: • PHA Innovation Research Award.

The award supports new areas of PH research that couldn’t have been explored without PHA funding. The grant provides up to $60,000 a year for two years. Csaba Galambos, MD, PhD, of the University of Colorado-Denver was the first recipient of PHA’s Innovation Research Award.

Galambos is the director of pediatric pulmonary research at Children’s Hospital Colorado and a lead investigator at the Pediatric Heart Lung Center. His research seeks to understand lung vascular development to identify new strategies for earlier diagnosis, prevention, and potential cures for infants and children with pulmonary disease and PH. • PHA Pediatric PH Research Award. Paul Critser, MD, PhD, has

received the Pulmonary Hypertension Association Pediatric PH Research Award. Critser is an assistant professor of pediatrics at Children’s Hospital Medical Center in Cincinnati. His project, “Pulmonary Vascular Development in BPHD Associated PH,” examines new a non-invasive MRI-based imaging tool. The project could lead to earlier diagnosis of bronchopulmonary dysplasia associated-PH. • PHA Early Career Mentored Scientist Award. PHA began accepting applications in fall 2022 for the Early Career Mentored Scientist Award, which will be granted in 2023. The grant will provide up to $65,000 for one year. The funding will support a PH-related research project that has been favorably reviewed for a National Institutes of Health Early Career Award (K award) but not funded. The award provides bridge funding so the project can generate sufficient preliminary data to make it highly competitive when resubmitted to NIH.

OTHER RESEARCH INITIATIVES

PHA made the final disbursement of the Aldrighetti Research Award for Young Investigators in 2022 to Catherine Simpson, MD. Simpson is interested in clinical and translational research to understand the progression and development of PAH. Understanding cellular changes can lead to the development of new treatments, earlier diagnosis and new ways to monitor disease progression. She is an assistant professor of pulmonary and critical care medicine at Johns Hopkins University.

A PHA-funded study on PH classifications resulted in the publication of two peer-reviewed articles in 2022 and 10 presentations at scientific and medical conferences. The study, “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics,” was supported by PHA and the National Heart, Lung and Blood Institute. The PVDomics study aims to identify biomarkers to improve PH diagnosis and treatment.

– BY THE NUMBERS – RESEARCH GRANTS

$265,00 REACCREDITATIONS

23

FUNDING COMMITMENT

70%

INCREASE IN FUNDING COMMITMENT

PHA Annual Report | 2022 21

A DOCTOR’S PASSION FOR PH RESEARCH

BY NADINE AL-NAAMANI

I

I am proud to be a member of the PH community and the PHA Registry steering committee.

With the support of PHA and other organizations that fund PH research, I am hopeful that we will be able to make a difference in lives of people with PH.

22 PHA Annual Report | 2022

was always fascinated by pulmonary disease, ventilatory mechanics and pulmonary hemodynamics. After a clinical elective at Columbia-Presbyterian Hospital, I joined the lab of Steven Kawut, MD, as a post­doctoral research scientist. I led his first National Institutes of Health-funded clinical trial in pulmonary arterial hypertension.

I had little experience in PH prior to my work on that trial, but I quickly learned more about it. The trial gave me the opportunity to interact with people afflicted with this disease.

I soon realized that I wanted to be part of the team to improve their lives.

In 2017, I was lucky to receive the Aldrighetti Research Award for Young Investigators from the Pulmonary Hypertension Association, as well as an NIH career development award. The grants allowed me to conduct my PH research, which focuses on the association of body weight and obesity on clinical outcomes.

In December 2020, the Annals of the American Thoracic Society published the results of a study that I led on patients enrolled in the Pulmonary Hypertension Association Registry. The study found that about two-thirds of patients were overweight or obese. Overweight and obese patients with PH experienced worse quality of life and higher rates of hospitalization. The results highlight the importance of addressing specific issues to improve quality of life for people with PH who are overweight or obese.

I am proud to be a member of the PH community and the PHA Registry steering committee. With the support of PHA and other organizations that fund PH research, I am hopeful that we will be able to make a difference in lives of people with PH.

Nadine Al-Naamani, MD, treats people with pulmonary hypertension and other serious lung conditions at Penn Medicine and conducts PH research. She is an assistant professor of medicine at University of Pennsylvania Hospital, a Pulmonary Hypertension Association-accredited PH Care Center.

Donor Base Strengthens as Pandemic Wanes

T

he year was one of rebuilding, as we resumed in-person fundraising events for the first time since 2020. We had to balance concern for our sometimesvulnerable event attendees amid lessrestrictive pandemic guidelines.

We held 14 O₂breathe walks and community fundraising events, with more than $277,000 in contributions— a 38% increase from 2021. The event that raised the most money was the February 2022 Tampa O₂breathe Walk, which raised nearly $25,000.

For our Sustainers Circle, 2022 also was a year of growth. The Sustainers Circle consists of donors who support PHA through regularly monthly gifts.

Part of that growth can be attributed to a GivingTuesday match by PHA Development Committee member Mike Lentz, who inspired donors to sign up for new recurring gifts or increase their existing monthly donations. Sustainers Circle donors provide consistent and reliable funding to support PHA’s important work. Their contributions raised more than $50,000 in 2022.

The passion and generosity of the PHA community through events, on GivingTuesday, and year round helps us get closer to realizing our goal of a world without pulmonary hypertension, empowered by hope.

PHA Annual Report | 2022 23

SUPPORTING RESEARCH AND AWARENESS

BY MIKE LENTZ

A

I support PHA with my time and money because there are so many unanswered questions about PH.

fter watching what my wife Maureen went through for five and a half years, and ultimately losing her, I made my choice to make PHA my primary mission.

Although I have twice survived cancer, it’s different when you lose someone you love to a disease such as PH. I support PHA with my time and money because there are so many unanswered questions about PH. If my children choose to support cancer research in my honor in the future, that is their choice, but I have settled on PHA. My wife Maureen was diagnosed with idiopathic pulmonary hypertension in 2012. In hindsight, Maureen had earlier signs of PH; we just didn’t know it.

Maureen went from being a highenergy, fun-loving person to someone who had difficulty taking a breath. When Maureen was eventually put on oxygen, we thought that life was over. We had to get used to having the oxygenator in our room running every night, and it became a way of life for us.

We were determined to live life as normally as possible while adjusting to

the new things we needed to do for her health. We did that, but on December 20, 2017, Maureen passed away. We scattered her ashes along the beach in Ireland we loved so much.

The Pulmonary Hypertension Association has helped me in my grief by introducing me to wonderful people, including those with the Jacksonville Support Group. I also became involved with PHA’s monthly bereavement telephone support group. I offer my perspective and experience as a caregiver.

My contributions are small compared to the big picture of what is necessary. I know that I can play a part in the research and development of a cure for PH, as well as raising awareness.

Mike Lentz of Ponte Vedra Beach, Florida, became involved in the Pulmonary Hypertension Association after his wife Maureen’s death. He raises money, participates in support groups and serves on the PHA Finance Committee. In 2023, he was named to the PHA Board of Trustees.

– BY THE NUMBERS –

$49,708

3,544

132

14

$277,487

GIVING TUESDAY

OVERALL DONORS

SUSTAINERS CIRCLE MONTHLY DONORS

FUNDRAISING EVENTS

DONATED IN FUNDRAISING EVENTS

24 PHA Annual Report | 2022

Pulmonary Hypertension Association 2022 Financials 2022 REVENUES

Total Revenue & Support | $4,484,852

120%

-46%

17%

9%

Contributions, Grants and Research

Investments

Advertising, Merchandise and Other Income

Dues and Registration Fees

2022 EXPENSES

2022 PROGRAM SERVICES

Total Expenses | $6,972,862

Total Expenses | $4,864,512

51%

70%

Promote Quality Patient Care

Program Services

20%

22%

Management and General

Empower Patients and Caregivers

11%

13%

Fundraising

Catalyze Research

14%

Advocate

NET ASSETS OVER TIME

$15,890,551

2018 2019

$19,169,046

2020

$19,355,231 $21,521,662

2021

$19,034,057

2022 0

5

10

15

20

25

BY FISCAL YEAR ($ MILLIONS)

PHA Annual Report | 2022 25

PHA Board of Trustees and Corporate Committee

OFFICERS

PH PROFESSIONAL NETWORK EXECUTIVE COMMITTEE

DISTINGUISHED ADVISERS

Traci Stewart, RSN, CSN, CHFN, chair elect

Kimberly Jackson, RN, BSN, chair

Erika S. Berman Rosenzweig, MD

Cheri Abbott, RN, CCRP

Bruce H. Brundage, MD

Nicole Creech, treasurer

April Blakley, RN, BSN

Richard Channick, MD

Colleen Connor, secretary

Jessie Dunne, PharmD, BCPS, BCCP

C. Gregory Elliott, MD, FCCP, MACP

Colleen Brunetti, MEd, CHC, immediate past chair

Loida A. Johnson, CRNP

Karen A. Fagan, MD

Tisha Kivett, RN, BSN

Matt J. Granato, LLM, MBA, president and CEO, ex officio

Michael D. McGoon, MD

Melissa Magness, MSN, APRN, CNP-AC, chair-elect

Vallerie V. McLaughlin, MD

SCIENTIFIC LEADERSHIP COUNCIL

Ron Oudiz, MD

Anna R. Hemnes, MD, chair

MANY THANKS TO THOSE WHO SERVED IN THE FOLLOWING ROLES IN 2022:

Tony Lahnston, chair

TRUSTEES Todd Bull, MD, Scientific Leadership Council chair elect

David B. Badesch, MD

John H. Newman, MD

Murali Chakinala, MD, FCCP, Scientific Leadership Council immediate past chair

Steven H. Abman, MD

Ramona Doyle, MD, MSc

Eric D. Austin, MD, MSCI

Anna R. Hemnes, MD, Scientific Leadership Council chair

Sonja Bartolome, MD Todd M. Bull, MD, chair-elect

Cheri Abbott, R.N., CCRP, PHPN Executive Committee chair

Kimberly Jackson, RN, BSN, PH Professional Network chair

Murali M. Chakinala, MD, FCCP, immediate past chair

Murali Chakinala, MD, FCCP, Scientific Leadership Council chair

Mitch Koppelman, PhD

Kelly Chin, MD

Michelle Ferdinand Liu, MD, MPH, FAAOA

Vinicio A. de Jesus Perez, MD, FCCP

Ron Oudiz, MD, Scientific Leadership Council immediate past chair

Mike Lentz

Ankit A. Desai, MD, FACC, FAHA

Melissa Magness, MSN, APRN, CNP-AC, PH Professional Network chair elect

Jeffrey Fineman, MD

Mike Naple

Mardi Gomberg-Maitland, MD, MSc

Monica M. Penaranda

Daniel Grinnan, MD

Diane Ramirez

Kristin B. Highland, MD, MSCR

Doug Taylor

Tim Lahm, MD

Matt Wall

Deborah J. Levine, MD

Delphine Yung, MD, Accreditation and Registry Committee chair

Wes McConnell, MD

William R. Auger, MD

Teresa De Marco, MD

Robert P. Frantz, MD

Lana D. Melendres-Groves, MD John J. Ryan, MD, MB, BCh, BAO

EMERITI EX OFFICIO

Sandeep Sahay, MD

C. Gregory Elliott, MD, FCCP, MACP

Oksana A. Shlobin, MD, FCCP

Michael D. McGoon, MD

Thenappan Thenappan, MD

Edwin Simpson

Nidhy Varghese, MD

Judith Simpson, RN, EdS

Corey E. Ventetuolo, MD, MS

HONORARY Carl Hicks

26 PHA Annual Report | 2022

R. James White, MD, PhD Timothy L. Williamson, MD

Matt Wall, PHA Board of Trustees treasurer

Joel Wirth, MD, Pulmonary Hypertension Care Centers Board chair Melisa Wilson, PHA Board of Trustees member William Jansen, PHA Board of Trustees member

PHA BOARD OF TRUSTEES

CORPORATE PARTNERS Our corporate partners recognize the Pulmonary Hypertension Association as a leader in the PH community. These companies make a difference year-round through their generous corporate giving, volunteerism and fundraising. They know that a strong PHA means a vibrant and empowered PH community. We thank them for their commitment and recognize them here, based on their funding support.

Accredo Aerami Therapeutics Aerovate Therapeutics Aria CV Bayer CVS Specialty Gossamer Bio Halo Biosciences Insmed Janssen Liquidia Merck Respira Therapeutics Sumitomo Pharma America United Therapeutics Corporation Vision Health Walgreens RX

PHA Annual Report | 2022 27