PHA Annual Report 2020

PHA ANNUAL REPORT 2020

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PULMONARY HYPERTENSION ASSOCIATION

Letter from Leadership

W

hen 2020 began, we were working hard to plan an actionpacked conference, filled with educational opportunities and emotional connections. But the COVID-19 pandemic upended life as we knew it, transforming the way the Pulmonary Hypertension Association (PHA) serves, supports and communicates with the pulmonary hypertension (PH) community.

Matt J. Granato

Colleen Brunetti

The transformation began early in the year, as we monitored the alarming transmission rate of the new virus. A day after the Centers for Disease Control and Prevention announced the first case of community spread in the United States, PHA launched the online resource center COVID-19 and Pulmonary Hypertension.

As scientific and health care leaders urged widespread public precautions, PHA made the difficult decision to cancel PHA 2020 International PH Conference and Scientific Sessions. We quickly

LETTER

from Leadership

launched the wellness series “PHA Connects: COVID-19 and Your Health” to provide the educational, social and support programming we knew the community would miss without Conference.

As the world adapted to masking, distancing and business shutdowns, the PH community navigated new challenges related to oxygen and therapy access. Patients and health care providers suddenly had to manage diagnostic tests and clinical visits in the world of telehealth.

And many pulmonologists and respiratory therapists were on the front lines of treating seriously ill COVID-19 patients.

Amid the changes, as many mourned losses isolated from loved ones, the PH community lost a cherished member, friend and leader. Pat Paton, one of the four women who founded PHA in 1991 around a kitchen table in Florida, died in July 2020, just six months after the death of her husband Jerry.

Our efforts to serve and support the PH community throughout the pandemic wouldn’t have been possible without Pat’s vision. We proudly remained patient-focused and driven as our staff, volunteers and leadership transformed the ways we educate, inform and connect the community.

Letter from Leadership

2020 ANNUAL REPORT

Despite the pandemic-related challenges, we continued to fulfill our mission to extend and improve the lives of those affected by PH. The PHA 2020 Annual Report highlights our accomplishments in a most unusual year.

Our 2020 achievements may look different than those of previous years, but we’ve learned new ways to shape our work and light the path forward. As we continue to adapt to life in a pandemic, PHA marks its 30th anniversary in 2021.

Our vision for a world without PH, empowered by hope, has evolved over the past 30 years, and it will continue to evolve as research unveils new understanding and treatment of PH. As we move forward, we acknowledge the patients, caregivers, family, volunteers, fundraisers, support group leaders and health care professionals who inspire and make possible our work.

Matt J. Granato, LL.M., MBA

Colleen Brunetti, M.Ed., C.H.C.

President and CEO Pulmonary Hypertension Association

Board of Trustees Chair Pulmonary Hypertension Association

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PULMONARY HYPERTENSION ASSOCIATION

Pandemic Response

PHA AND THE PANDEMIC: SUPPORTING AND INFORMING THE COMMUNITY

P

ulmonary hypertension (PH), or high blood pressure of the lungs, is a rare, life-threatening disorder. Because people with PH are high risk for COVID-19 complications, the Pulmonary Hypertension Association (PHA) developed a pandemic response early in 2020.

We launched the online resource center COVID-19 and Pulmonary Hypertension soon after the Centers for Disease Control announced the first case of community spread. It quickly became the most popular area of our site. It features information on treatment access, financial assistance and risks for people with underlying health conditions, as well as tips to maintain health and digitally connect with others in the PH community.

In April 2020, we launched “PHA Connects: COVID-19 and Your Health,” a series of webinars, Facebook Live Q&As, virtual community gatherings and mailings to people without email addresses. The

programming was intended to provide educational, social and support opportunities after we canceled PHA 2020 International PH Conference and Scientific Sessions.

Topics included emergency planning, managing stress and anxiety, exercise and pulmonary rehab, and preparing for telemedicine appointments. We also hosted an online fashion show and awards ceremony, two popular conference features.

Our pandemic response continued throughout the year. The December 2020 issue of Pathlight, our quarterly member magazine, was dedicated to pandemic coverage. It featured stories of hope, resilience and health from patients, caregivers and health care professionals.

PHA’s commitment to inform and support the PHA community gained national recognition. Our 2020 PH Awareness Month campaign, disCOVER PH, received a gold EXCEL Award from the Associations, Media & Publishing Network. Our pandemic response won a bronze.

BY THE NUMBERS

14 Webinars

5

PHA Connects COVID-19 Q&As

8 3

Virtual Community Gatherings

MAILINGS TO 4,600 MEMBERS without email addresses

84,010 PAGE VIEWS

“Zebra Lady” Barbara Thompson donated 10% of proceeds from her handmade mask sales to PHA.

of PH & COVID-19 pages on PHAssociation.org

Pandemic Response

2020 ANNUAL REPORT

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SURVIVING COVID-19 DESPITE THE ODDS

O

ver the past few years, Susan Huber has overcome and adapted to many health challenges, most recently COVID-19.

Susan, of Palm Bay, Florida, was diagnosed in 2015 with pulmonary hypertension (PH). She has a condition called left bundle branch block, which delays or blocks electric impulses that make the heart beat, and heart failure with preserved ejection fraction, which is when the left ventricle doesn’t properly fill with blood.

In July 2020 Susan noticed that she was coughing more than usual after her husband, Dennis, was exposed to COVID-19 at work. Dennis had a mild case and felt better after three days. Susan’s cough worsened and she developed chills, body pain, fatigue and loss of smell.

After monitoring her oxygen levels, Susan noticed her levels decreased to 88 from her usual 94. Susan normally would have gone to the hospital if she had difficulty breathing, but she feared being alone and never leaving the hospital.

“I had never been so sick in my life. I had a 102-degree fever for 12 days.

Twice, I thought I might be dying, and I didn’t know if I was going to survive.”

Susan decided to go urgent care when it became painful to breathe.

The doctor prescribed steroids, antibiotics and a supplement to build antioxidants. After a televisit with her primary care doctor, another round of steroids relieved some respiratory symptoms. She didn’t feel entirely well until November, four months later.

Although she has recovered from COVID-19, Susan hasn’t regained her full sense of smell and most food still tastes bland or bad. Certain things have an unpleasant, distorted smell. Soap, detergent, her body spray, olives, white wine and coffee all smell the same.

Recently, Susan participated in a study about her loss of smell. She received three boxes with different scents by mail. She had to peel the top off and sniff each one. The first box had a faint smell that reminded her of the unpleasant odor. She couldn’t smell anything in the other boxes. Afterward, she answered questions online about what she smelled.

Susan’s faith helps her manage her PH and heart conditions, and it helped her get through COVID-19. She chooses to maintain a joyful attitude even on the toughest of days.

“I survived COVID-19 even though the odds were stacked against me,” Susan says. “It was a struggle, but I came out of it stronger and more determined.”

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PULMONARY HYPERTENSION ASSOCIATION

Pandemic Response

PH DOC TAKES ON COVID-19

A

s COVID-19 cases swelled in early 2020, hospitals and health care clinics ramped up resources and canceled elective procedures and routine patient visits. Some, like Brigham and Women’s Hospital in Boston, opened new intensive care units to critically ill, highly contagious patients.

“All were very sick, with multi-organ failure,” says pulmonologist Aaron Waxman, M.D., Ph.D. “A lot of these patients were in septic shock.

Within a matter of days, they had stiff lungs. This was an epidemic of ARDS (acute respiratory distress syndrome).”

Dr. Waxman, director of Brigham and Women’s Pulmonary Vascular Disease Program, led one of seven ICU teams responsible for 21 patients each.

Brigham and Women’s is Pulmonary Hypertension Association-accredited pulmonary hypertension care center.

Initially, each team spent at least 13 hours a day in the hospital, administering antibiotics, managing fluids and adjusting care plans. Many patients needed dialysis. Every three hours, the medical teams repeated rounds, wearing hats, masks, face shields and gowns.

At the beginning of the pandemic, the hospital weathered a brief period of personal protective equipment (PPE) shortages. Each health care professional received one N95 mask a week, and the hospital temporarily ran out of certain types of gowns. Everyone had to wash and change before leaving the hospital.

“We were super vigilant about watching out for each other and not bringing any of that home,” says Dr. Waxman, who worried about spreading the virus to his wife and adult son.

In between rounds or after their shifts, many doctors checked in with their regular patients through televisits. “I got the sense my patients were more worried about me,” Dr. Waxman says. “It was pretty touching.”

During the 12 weeks the PH clinic was closed for in-person visits, few patients reported serious problems. “Amazingly, they all did remarkably well. I would ask patients to take pictures of their ankles and legs to see if they had edema. We made sure they all had masks, knew how to keep them clean, wash their hands and stay away from people who were potentially infected.”

Advocating for the PH Community

BY THE NUMBERS

345,400 Social Media Impressions

7,900 Social Media Engagements

12,927

Page views of Awareness Month web pages

2020 ANNUAL REPORT

ENGAGING THE COMMUNITY TO RAISE PH AWARENESS

E

ach November, the Pulmonary Hypertension Association raises awareness about pulmonary hypertension, or high blood pressure of the lungs. In 2020, PHA rallied the PH community to support awareness efforts through a highly interactive campaign.

PHA’s website offered other ways to participate. As in previous years, it featured a toolkit with social media graphics, sample posts, profile and cover images, customizable news releases, and downloadable fliers to post in health care settings.

Our 2020 “DisCOVER PH” theme focused attention on symptoms and known risks, including those from associated conditions and COVID-19 complications.

We also used Awareness Month to launch PHA’s upcoming 30th anniversary.

We capitalized on the 30 days of November to launch an interactive Awareness Month calendar. It worked like a simple computer game or virtual advent calendar: users clicked on the date to discover facts, tools and rewards to educate people about PH risk factors, symptoms and resources.

November is Pulmonary Hypertension Awareness Month PHAssociation.org/AwarenessMonth

Other elements of the award-winning Awareness Month campaign included: ■ Seven Facebook Live events, including three in Spanish. Together, the events reached nearly 13,000 people.

■ Virtual Advocacy Day­: email campaign to Congress to “Keep PH in the Conversation.”

■ CTEPH Awareness Day activities, including downloadable graphics and two webinars.

Reveal Today’s PHact in our PH Awareness Month Calendar

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PULMONARY HYPERTENSION ASSOCIATION

Advocating for the PH Community

BY THE NUMBERS

MAKING LIFE BETTER THROUGH ADVOCACY

P

ulmonary hypertension (PH) advocates couldn’t visit lawmakers in person on Capitol Hill during the pandemic. But that didn’t stop them from coming together to make life better for the PH community through advocacy.

Advocates called, wrote and virtually visited their members of Congress, sending more than 1,500 messages in 2020. They also participated in virtual advocacy events for World PH Day in May and PH Awareness Month in November.

Our advocacy work paid off in late December when Congress passed the No Surprises Act, which ends surprise medical billing for out-of-network services.

The No Surprises Act ensures in-network coverage for care provided by out-of-network clinicians at in-network facilities, as well as emergency care and air ambulance service.

PH advocates also urged lawmakers to: ■ Limit step therapy and other barriers to therapy access.

■ Protect patients’ use of copay assistance grants.

■ Fully fund the National Institutes of Health.

In addition to engaging the community through the legislative process, the Pulmonary Hypertension Association helps people with PH navigate the health

450

insurance system and advocate for themselves. Our Treatment Access Program provides information and support to tackle barriers to treatment access.

advocates

Our work to ensure uninterrupted, appropriate treatment for patients was particularly important during the pandemic. Throughout the year, we worked to secure: ■ Robust insurance coverage for telemedicine visits.

■ COVID-19 testing and treatment.

■ Enhanced paid sick leave benefits.

■ Extended refill.

■ Oxygen access/delivery.

■ Flexible REMS lab test requirements.

1,575 300 messages to

We also educated the community about potential therapy disruptions because of the pandemic and COVID-specific financial assistance funds.

members of congress

We are apart, but not alone.

Share your voice. #PHAAdvocacy

The PH community can’t visit Capitol Hill right now, but our voices have never mattered more. #PHAAdvocacy

Advocating for the PH Community

2020 ANNUAL REPORT

ADVOCATING FOR HERSELF AND OTHERS

D

iane Ramirez learned about the power of her voice at the Pulmonary Hypertension Association (PHA)’s International PH Conference and Scientific Sessions in 2008. Later that summer, she scheduled a meeting with a member of Congress.

“There were five patients in that meeting, and we all felt heard,” says Diane, of Lexington, North Carolina. “It was incredible.”

Since then, Diane has advocated for pulmonary hypertension (PH) awareness, research and education and has no intention of stopping.

In addition to serving on PHA’s Board of Trustees for 10 years, she is a support group leader for North Carolina’s Piedmont area. She tries to help other patients as much as she can, and she says meeting lawmakers and speaking up for herself and others is part of what keeps her alive.

“After living with this illness for over 33 years, I learned that my voice counts, what I go through matters, and what I do makes a difference,” she says.

Diane says PH taught her how to persevere. It taught her how to give when she thought she had nothing left to give. It taught her to never give up.

“I learned to enjoy all the moments life has to offer: to laugh, dance when I can, call a friend and be a friend.

Diane was 24 when she was diagnosed with pulmonary arterial hypertension.

Her work, school and social life had to change. There were no treatments for PH. And PHA and its support groups didn’t yet exist.

“I was put on oxygen to help with shortness of breath, heart medicine and a blood thinner as a precaution. I was terrified, and I barely understood what was happening.”

Today, she has a better understanding of PH and what it entails.

She takes three FDA-approved medications to treat PH and receives treatment at Duke University Medical Center, a PHA-accredited PH Care Center.

She no longer feels alone and scared. And she is happy and grateful to be alive.

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PULMONARY HYPERTENSION ASSOCIATION

Empowering Patients and Caregivers

PATIENTS AND CAREGIVERS CONNECT ONLINE

I

n early 2020, as the COVID-19 outbreak became a pandemic, the Pulmonary Hypertension Association (PHA) added virtual meetings to its wealth of support services. Remote meetings helped connect, support and educate the community without the risk of transmitting or contracting the virus.

Patients and caregivers could join from anywhere, as long as they had internet or phone access. And they could join any group, not just the closest one, which meant more opportunities to connect and meet new people. Virtual support groups helped many patients and caregivers cope with anxiety and isolation.

As the pandemic wore on, more benefits of remote meetings emerged. PHA’s peer support program expanded to reach patients and caregivers in 23 underserved areas, many where in-person meetings hadn’t existed. Many people who were homebound, lived too far away or lacked transportation regularly joined meetings.

In Corcoran, California, Gerardo Estrada appreciated the chance to make connections. Until the remote meetings, he had never encountered others with PH outside of his doctor’s waiting room.

“It’s hard enough dealing with pulmonary hypertension, and COVID-19 makes it even harder,” he says. “At the virtual meeting, I was able to get answers about COVID-19 from a professional.

And I enjoyed hearing from other patients on how they are dealing with their PH.”

Chris Archer-Chicko, CRNP, M.S.N., University of Pennsylvania Lung Center, says the pandemic inadvertently led to new ways to interact.

“We don’t know how long we will have to adjust to this way of living. This is a wonderful opportunity to keep the PH community connected.”

BY THE NUMBERS

375

support group meetings

4,402

support group attendees

72

telephone support group meetings

974 support line calls

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Facebook groups

Empowering Patients and Caregivers

2020 ANNUAL REPORT

VIRTUAL MEETINGS: FAMILY LIFELINES

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obert Tropiano’s 2011 chronic thromboembolic pulmonary hypertension (CTEPH) diagnosis shook him and his family to its core. But Pulmonary Hypertension Association support groups became a lifeline for the Abingdon, Pennsylvania, family.

Robert and his father — his then-caregiver — found a second family in at least two support groups. “They loved attending those meetings,” says Robert’s sister Ann Benner, who has cared for her brother since 2017 when their father died.

When the COVID-19 pandemic forced them to isolate from other family and friends, they were thrilled to participate in virtual meetings.

“The opportunity to attend meetings from our kitchen table has been nothing short of magical for both of us,” Ann says. “Robert’s joy was visible on his face. We learn something each time we attend a meeting, but now we can’t learn enough.”

Ann hopes virtual meetings continue after the pandemic. Before the pandemic, getting to meetings and medical appointments in Center City Philadelphia from the suburbs was a hardship. The challenges of distance, time, traffic, parking, juggling a wheelchair, oxygen and medical records were daunting.

“It was a beautiful thing for Robert and me to see and hear so many familiar faces during our virtual support group meetings,” she says.”It meant the world to us.”

The virtual meetings gave Ann a sense of peace and serenity during the pandemic.

“Until the virus struck, our whole family had been busy living and enjoying life.

Now Robert, my husband and my son have been isolated from the rest of our family, just like every other family trying to stay safe,” she says. Seeing their support group friends virtually was a regular highlight of their isolation.

Virtual meetings united and supported the pulmonary hypertension community throughout the pandemic, and support groups continue to meet remotely. Find a support group at PHAssociation.org/supportgroups.

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PULMONARY HYPERTENSION ASSOCIATION

Making an Impact in 2020

ACCREDITED

CARE CENTER

3,995 4,182 MEMBERS DONORS

1.38 Million

376 Members

57 PHAR patient

WEBSITE PAGE VIEWS

OF PH CLINICIANS AND RESEARCHERS

REGISTRY SITES

81 Accredited

44,900

332 Members

1,400 patients

CARE CENTERS

SOCIAL MEDIA FOLLOWERS

OF PH PROFESSIONAL NETWORK

ENROLLED IN PHA REGISTRY

Tribute to a Founder

2020 ANNUAL REPORT

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REMEMBERING PAT PATON

T

oday’s modern, digitally connected Pulmonary Hypertension Association (PHA) wouldn’t be possible without Pat Paton, who died in July 2020.

Pat saw the organization founded by four women around her kitchen table become the second largest rare disease association in the U.S. and inspire the founding and growth of more than 80 international partner associations.

“She was a determined person,” Judy Simpson says of her younger sister. “That’s why she survived as long as she did.”

Pat’s journey with pulmonary hypertension (PH) began in the late 1970s, about 10 years before her 1987 diagnosis. At the time, she and her husband Jerry were raising their daughter Julie and son Tom in Zionsville, Indiana, and operating two Dairy Queen restaurants.

To honor Pat’s legacy, PHA established the Patricia “Pat” Paton Leadership Award to recognize PHA’s volunteer leaders. Learn more at PHAssociation.org/PatPaton.

In addition to PH, Pat had severe, painful osteoporosis.

“Keeping herself occupied with PHA helped control the pain,” Judy says. “She was a fighter and a warrior.”

After her PH diagnosis, Pat and Jerry moved to Florida for warmer weather and sea-level altitude to ease her breathing. Pat’s desire to meet other people with PH eventually connected her with Teresa Knazik and Dorothy Olson, who also lived in Florida. When they decided to meet, Judy and her husband Ed flew to Florida to join them.

That 1991 gathering, known as the “kitchen table” meeting, set plans into motion for the United Patient’s Association for Pulmonary Hypertension, now PHA. “Pat’s part was so important,” Judy says. “She took on the responsibility of contacting every patient until the list got into the hundreds. She was the dynamic force behind all four of us.”

Before PHA had full-time employees, Pat set the groundwork for PHA’s growth, from the telephone support line to the regional coordinator program and so much more.

“Pat was the organizer, the person who stood out of the spotlight and did the roll-up-your-sleeves work of getting programs started and keeping them moving forward,” says Rino Aldrighetti, who was PHA’s first executive director, and first paid employee.

Greg Elliott, M.D., who met the founders in 1994 at the first PH International Conference in Georgia, remembers Pat for her humility, honesty and passion for helping others. “Pat felt she had been gifted. Even though she wouldn’t have chosen to have PH, she felt that was her purpose.”

Bruce Brundage, M.D., a Bend, Oregon, cardiologist who served on PHA’s Board of Trustees, said, “Pat had a vision for PHA, and I am so glad she lived to see it come to fruition.”

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PULMONARY HYPERTENSION ASSOCIATION

Promoting Quality Patient Care

PROMOTING QUALITY PATIENT CARE

T

he pulmonary hypertension (PH) community’s shared concerns about the COVID-19 pandemic highlighted the importance of the Pulmonary Hypertension Association (PHA)’s efforts to educate health care providers.

Early on, many PH-treating physicians and clinicians joined colleagues from other specialties as COVID-19 cases overwhelmed hospitals and health care facilities. At the same time, they increasingly relied on telemedicine to care for PH patients, who were among the populations vulnerable to COVID-19 complications.

Despite pandemic-related challenges, PHA fulfilled its charge to keep health care professionals up to date. We provided the latest information about PH care and treatment through targeted digital communications, online courses, patient education materials and our peer-review journal, Advances in Pulmonary Hypertension. Advances addressed new invasive technologies and devices, drug development and clinical trials, and high altitude-related PH. In addition to educating health care professionals, PHA produces resources to help clinicians and physicians educate patients. Early in the year, we produced a six-video series on exercise, pulmonary rehabilitation, yoga, and cardio and strength training.

Other resources created in 2020 include: the brochure “What You Need to Know After a Pulmonary Embolism,” and handouts on VQ/lung scans, pulmonary function tests, and more.

BY THE NUMBERS 2020 ACHIEVEMENTS

15,586 Advances in Pulmonary Hypertension subscribers

134%

Increase in Continuing Medical Education certificates

2,726 enrolled in online courses

(UP 106%)

1,010 33 Total users

New courses

(UP 56%)

(UP 50%)

Promoting Quality Patient Care

2020 ANNUAL REPORT

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PATIENT ADVOCATE LOVES TO LEARN, TEACH, ADVOCATE

M

elisa Wilson, D.N.P., APRN-BC, knew little about pulmonary hypertension (PH) until 2007 when she “lucked upon” a nurse practitioner position. Her physician partner, James H. Tarver III, M.D., a cardiologist with a passion for PH, sent her to the Pulmonary Hypertension Association (PHA)’s PHPN Symposium, a biennial event for allied health professionals.

“It didn’t take much to catch the buzz and keep doing this,” says Melisa, now a member of the PHA Board of Trustees.

Since then, Melisa has become a pillar of PHA’s patient and professional communities. As clinical director of the pulmonary hypertension program at AdventHealth Orlando, a PHAaccredited PH Care Center, she is a committed advocate for PHA and continually shares opportunities to involve peers and patients.

With Dr. Tarver, Melisa founded PHA’s Orlando support group in 2008. Rather than lead the meeting herself, she wanted to empower and support patients and caregivers. She handled burdensome logistical tasks, connected patients to travel to meetings together and worked with industry partners.

Today, she serves as a medical liaison and provides information about PH and quality of life.

During the COVID-19 pandemic, Wilson worked with PHA to facilitate the group’s transition to virtual meetings and provided COVID-19 education. She and her team answered questions about the virus, prevention and safety, and the importance of getting vaccinated.

In addition to supporting patients, Wilson is a longtime PHA volunteer. She has chaired the PHPN Executive, Symposium and Practice committees and is a member of the PHCC Oversight Committee and PHA’s Scientific Leadership Council. She has presented at numerous PHA events for health care professionals and patients.

“I love to learn, I love to teach, I love to mentor,” she says.

Early on, Melisa worked to include all allied health professions in PHPN, not just registered nurses, and made it her mission to make Symposium welcoming and inviting. While chair of the PHPN Symposium Committee, she doubled the number of accredited sessions, implemented a speaker proposal system and established blind review of abstract submissions.

“The more people who know about Symposium, the better we can treat people and affect patient outcomes,” she says. “Everyone has a place at the table and a place in taking care of the patient.”

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PULMONARY HYPERTENSION ASSOCIATION

Catalyzing Research for a Cure

INVESTING IN SCIENCE AND SCIENTISTS

F

unding pulmonary hypertension (PH) research has been part of the Pulmonary Hypertension Association (PHA)’s mission for more than 20 years. PHA funds research projects at a variety of institutions on a wide-range of PH issues.

Among the most visible studies funded by PHA’s research program is “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics,” which aims to identify biomarkers to improve PH diagnosis and treatment. The study, funded in partnership with the National Institutes of Health, National Heart, Lung, and Blood Institute, led to a peer-reviewed journal article in 2020. Additionally, 16 writing committees are analyzing data from the study and drafting related manuscripts.

And despite the pandemic, investigators delivered 11 talks and poster presentations at virtual scientific conferences in 2020.

PHA’s research program also encourages long-term careers in PH research through fellowships, young investigator awards and early-career grants for difficult-to-fund research projects.

In 2020, PHA received twice the number of applications for its 2021 Aldrighetti Research Award for Young Investigators, which was granted to Vineet Agrawal, M.D. Ph.D., of Vanderbilt University.

PHA also continued funding the PHA/American Thoracic Society Research Fellowship in Pulmonary Hypertension and the 2020 Aldrighetti research award.

PHA REGISTRY ADAPTS TO PANDEMIC As telehealth visits increased during the pandemic, PHA’s patient registry, PHAR, adopted remote patient-consent and data-entry procedures. The new procedures allowed people with pulmonary hypertension (PH) to continue participating in the registry, which helps advance science and improve PH care. The remote data-collection options enabled the registry to collect critical data while patients and their families were taking precautions to avoid contracting the coronavirus.

PHAR collects data from people with pulmonary arterial hypertension, pediatric PH due to developmental lung disease, and chronic thromboembolic pulmonary hypertension. PHAR data includes demographic characteristics, diagnosis and treatment information, and quality-ofcare metrics.

Catalyzing Research for a Cure

2020 ANNUAL REPORT

PUTTING SCIENCE TO WORK FOR PATIENTS

K

e Yuan, Ph.D., grew up in Hangzhou, China, where her parents tried to give her a good education and every opportunity to succeed. Their home near the Hangzhou Botanical Garden was full of books, thanks to her parents’ love of learning.

After receiving the book “Kid’s Encyclopedia” for her fifth birthday, she spent many afternoons in the botanical garden trying to identify plants and insects. “I decided to devote my life to the pursuit of scientific knowledge. I hoped to share my love of science with others by writing my very own encyclopedia.”

Her interest in science eventually led her to pulmonary hypertension (PH) research. In December 2019, she received the Pulmonary Hypertension Association’s Aldrighetti Research Award for Young Investigators. The award, supported by Janssen Pharmaceuticals, provided funds to research signaling mechanisms that regulate pulmonary arterial hypertension progression.

The grant allowed Dr. Yuan to start her own laboratory at Boston Children’s Hospital, Harvard Medical School. She recently was promoted to associate scientific researcher and assistant professor of pediatrics at Harvard Medical School and a Parker B. Francis Fellow in the Division of Pulmonary

Medicine at Boston Children’s Hospital. It also allows her to mentor students and trainees, especially women pursuing scientific careers, she says.

Most importantly, the grant allows her to advocate for patients with PH and raise awareness among clinicians and scientists. “By pooling our efforts, we can provide patients with treatment options that will give them control over this devastating disease.”

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PULMONARY HYPERTENSION ASSOCIATION

Raising Funds to Achieve Mission

RAISING FUNDS TO ACHIEVE OUR MISSION COMMUNITY GENEROSITY IN CHALLENGING YEAR

T

he generosity of the pulmonary hypertension (PH) community allowed the Pulmonary Hypertension Association (PHA) to provide critical services during a challenging year.

PHA’s Board of Trustees and a dedicated caregiver generously matched the donations with a $15,000 gift. With the match, PHA received $48,043 in support.

Although the pandemic prevented the community from hosting and attending in-person fundraisers, individual and corporate contributors came together for several digital events.

PHA hosted 13 virtual fundraisers in 2020, including O2breathe events and fun walks in Dallas/ Fort Worth, Oklahoma City, Philadelphia and Rochester, New York. Participants raised money and awareness online, then came together in live events for community building and team recognition.

In December, PHA raised a record $101,410 in donations on #GivingTuesday 2020. The amount was 45% higher than contributions from #GivingTuesday 2019. The Dec. 3 campaign drew 321 individual donations and a $25,000 match from a donor group.

The global Giving Tuesday movement launched a special campaign, Giving Tuesday Now, in the early months of the pandemic. The May 5 event, which coincided with World PH Day, secured $33,000 in donations to PHA. Former and current members of

Those donations, along with the Sustainers Circle monthly giving club, endowments and other gifts, supported PHA programs at a critical time for patients, caregivers and medical professionals.

BY THE NUMBERS

$48,043

Giving Tuesday Now (May)

$101,410

Giving Tuesday (December)

13

Virtual Fundraising events

Raising Funds to Achieve Mission

2020 ANNUAL REPORT

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FUNDRAISING FAMILY CELEBRATES LIFE-SAVING ADVANCEMENTS

G

ale Perkins never expected to have the family she dreamed of. But treatment advancements since her 1983 pulmonary hypertension (PH) diagnosis significantly improved her health, allowing her to adopt.

“I am living my 20s in my 50s, raising four kids,” says Gale, who had just finished college when she was diagnosed.

Despite doctors’ warnings, she didn’t believe she wouldn’t live to 40. But she feared they might be right when she became severely ill in the 1990s and couldn’t walk from room to room. When she was evaluated for a heart-lung transplant, she learned her PH was related to congenital heart disease.

After surgery to repair a hole in her heart and widen her arteries, she felt much better and no longer needed oxygen therapy. She started making plans for the future and asked her cardiologist whether she was well enough to adopt.

“I’m grateful that I got a chance later in life to do it,” she says. “It didn’t occur to me that I was ‘too old.’ My kids needed a mom, and I needed kids, and it all worked out.”

Gale has been involved in the Pulmonary Hypertension Association (PHA) since the late 1990s and is a long-time fundraiser.

A member of the Sustainers Circle, PHA’s monthly giving club, Gale and her children also participate each year in the PHA Kansas City O2breathe Walk.

During the pandemic, they participated in a virtual version of the fundraiser. “We walked around the neighborhood with the dog.

Although it wasn’t as fun walking with the community, it gave us a bit of normalcy. The pandemic didn’t stop us from what we like to do — celebrating what it’s taken to get this far.”

Participating in the annual walk helps Gale’s children understand how the PHA community has helped their mom and why it’s important for their family to help others. Gale wants to ensure PHA has resources to educate health care professionals, fund research and support patients and families.

“When I was young, doctors knew my EKG was really weird, but they didn’t dig any further. Education is so important to identifying and treating PH. If PH is found soon enough, more lives can be saved.”

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PULMONARY HYPERTENSION ASSOCIATION

Donors

DONORS $100,000

$5,000 – $9,999

$2,500 – $4,999

$1,000 – $2,499

Colleen and Shawn Connor

Estate of Mary Margaret Brady

Adams and Reese LLP

Baylor Scott & White Healthcare

Micheala A. Aldred

Margery A. Corristan

Estate of James Ryan

Cable East Inc.

Ramona Doyle and Amy Kindrick

Rino Aldrighetti

Frank H. Cann

Ellie Mae Fund

Kristi Allred

Robin B. Doerge

Mary A. Felkel

Andersen Family Foundation

Barbara Lee Smith Trust

First Bethany Bank & Trust

Mary and Dean Goldbeck

Christina A. Back

Express Scripts Foundation

James Hawkins

Courtney and Andrew Griffin

Remzi Bag

Estate of Stacey Gausling

INOVA Fairfax Hospital

Heather and Matthew Hebert

Sandra J. Basel

Robert Olson

Robert J. Kirke

William and Patti Hoff

Anna Bernus

Dina and Joseph Kruger

Andrew Hoover

Craig and Lori Bjornsund

$10,000 – $24,999

Shale Lapping

Kaiser Permanente-California

Ethalinda Blackman

Jason Browne

LPV LLC

Mitchell and Debbie Koppelman

Esperanza F. Borg

Aya and Randolph Clark

Macquarie Group

Ronald and Nancy McFarlane

Katherine Bouton

Cushman & Wakefield

Alex Melconian

Andrew and Rutha Bowers

Julie and John Danstrom

John E. Nino

Mercedes-Benz Financial Services

Estate of Terri Jakuboski

Michael and Mari Paton

John Nooncaster

Arthur and Karen Broadhurst

Barbara T. Gamer

Harkisan Laheri

Stewart and Forrest Priddy Jan and Eric Skuldt

Braden Buehler and Benjamin Mini

Gap Inc.

Licensed Practical Nurses Association of D.C.

Northside Hospital Healthcare System

Marianne Garigen

Philip E. Paroian

Richard K. Calverley

Sally and Henry Gentsch

S&S Electric Co. Inc.

The Swoff Family

Richard Peacy

Jacinta Calverley

The Hamill Foundation

The Charles & Marion Weber Foundation

Valerie and Donald Porter

Azalea Candelaria

George Washington University Hospital

Robert Wood Johnson Foundation

Martha W. Carr

sMiles for Katie Inc.

Murali M. Chakinala

Wendy Griggs

Children’s Hospital of Philadelphia

Margaret Hackett

Roger and Deborah Towle

Jeffrey Harris

Joel and Barbara Wirth

Thomas E. Clauss

Mary E. Harrison

James Collins

Geralyn Heller

Donald and Linda Connell

Mary Sue D. Hines

$25,000 – $99,999

The Louis J. and June E. Kay Foundation

Fifi Sutanto

Thomas Jefferson University UPHill Journeys Hans Warren Stephen and Andrea White

Temple University

Karen S. Briggs

Barbara Carson

Todd DellAquila Victor M. Dillingham Kenneth Donovan Marcia and Robert Dorsey Doreen A. Duffy Gary Dukart Durham Foundation Electronic Arts ExxonMobil Karen A. Fagan Joseph and Ann Farrell Sara Fields Paul L. Finelt

Summer and Jason Gibson John Gottbrath

Donors

Asako U. Igawa

Mary Novak-McCafferty

Stout Transportation LLC

Johns Hopkins All Children’s Hospital

Vivian S. Peek

Margaret N. Strand

Monica Penaranda

Tammi Thomas

Daniel Kawato

Lauren Permuy

Carla and David Thompson

Elaine Keller

Pfizer Inc.

Martin and Lynne Vandenakker

John Kellow

Peter G. Pierce, III

Al and Kristi Vculek

Kevin Kondry

Richard and Nadia Pilat

Charlene Vener

Nancy LaFevers

Janet and Andy Pinson

Melissa and Perry Warhurst

Richard B. Learman

John and Sally Pletcher

Patricia and Jim Wasserman

Guy Lemire

Susan and John Poduska

Charmaine and Rick Weaver

Kathryn Lindsay

Terry Powers

Sheila E. Weaver

John and Angela Little

R. J. White

Michael A. Locricchio

Pulmonary Hypertension Research Fund

Peter B. Lodewick

Anthony Ratti

Mike Willis

Marlene Malek

Mary B. Rogers

Andrea Witlin

John and Carol Mariner

Sabal Trust

John Wittenberg

Sandra Matteucci

Josephine Sanchez

Robert J. Zamberlan

Michael and Bonnie McGoon

Robert D. Sayer

Richard A. Michalski and Anne Frates

Deborah and Olivia Shelton

Microsoft

Judith and Edwin Simpson

Elizabeth “Betsie” and John Miklos

Rebecca and James Smirk

Mobile TV Group LP

Raschid Smith

David K. Moreland Mott Charitable Trust Chetan Naik Vern Nelson Alan G. Ng

Annette C. Wild

Oksana A. Shlobin

Cecilia M. Smith Will D. Smith Antoinette and John Sperando Subha Srinivasan John and Marcia Stibbs Steven Story

We care about omissions.

Contact: Giving@PHAssociation.org

2020 ANNUAL REPORT

21

2020 CORPORATE PARTNERS Our corporate partners recognize PHA 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.

Janssen Pharmaceuticals Inc. United Therapeutics Bayer CVS Health Accredo Acceleron Pharma Liquidia Technologies Gossamer Bio AllianceRx Walgreens Prime Altavant Sciences Bellerophon Therapeutics Insmed Inc. Reata Pharmaceuticals Inc.

22

PULMONARY HYPERTENSION ASSOCIATION

PHA Leadership

PHA BOARD OF TRUSTEES OFFICERS Colleen Brunetti, M.Ed., C.H.C., Chair, adult with PH Tony Lahnston, Treasurer, bereaved family member of child with PH Nicole M. Creech, Secretary, adult with PH Karen A. Fagan, M.D., Immediate Past Chair, treats adults with PH Matt J. Granato, LL.M., MBA, Ex-officio, PHA President and CEO

Ronald J. Oudiz, M.D., treats adults with PH

SCIENTIFIC LEADERSHIP COUNCIL

Monica M. Penaranda, adult with PH

Steven Abman, M.D.

Diane Ramirez, adult with PH

Eric D. Austin, M.D, MSCI

LIAISONS

Doug Taylor, adult with PH

Sonja Bartolome, M.D.

Cheri Abbott, R.N. (non-voting)

Traci Stewart, R.N., M.S.N., CHFN, treats adults with PH

Todd M. Bull, M.D.

Kimberly Jackson, R.N., B.S.N.

Murali M. Chakinala, M.D., FCCP, Chair

Nicole Reid, R.N., B.S.N.

Kelly Chin, M.D.

PH PROFESSIONAL NETWORK (PHPN) EXECUTIVE COMMITTEE

Matt Wall, parent of a child with PH Jessie Kohler Wenninger, adult with PH

MEMBERS-AT-LARGE

Melisa A. Wilson, ARNP, ACNP-BC, treats adults with PH

Cheri Abbott, R.N., CCRP, retired PH-treating medical professional

EMERITI EX-OFFICIO

Frank Cann, family member of adult with PH

C. Gregory Elliott, M.D., FCCP, MACP

Murali M. Chakinala, M.D., FCCP, treats adults with PH

Michael D. McGoon, M.D. Judy Simpson, bereaved family member of adult with PH

Ramona Doyle, M.D., M.Sc., treats adults with PH

Edwin Simpson, bereaved family member of adult with PH

Anna Ryan Hemnes, M.D., treats adults with PH Kimberly Jackson, R.N., B.S.N., treats adults with PH William Jansen Mitch Koppelman, Ph.D., spouse of adult with PH and bereaved parent of children with PH Michelle Ferdinand Liu, M.D., M.P.H., FAAOA, parent of child with PH

HONORARY Carl Hicks, bereaved parent of child with PH

Timothy L. Williamson, M.D. Delphine Yung, M.D.

William R. Auger, M.D.

Vinicio A. de Jesus Perez, M.D., FCCP, FAHA Teresa De Marco, M.D. Ankit A. Desai, M.D., FACC, FAHA

Colleen Connor, adult with PH

R. James White, M.D., Ph.D.

Jeffrey Fineman, M.D.

Cheri Abbott, R.N., CCRP, Chair Kimberly Jackson, R.N., BSN, PHPN Chair-elect

Robert P. Frantz, M.D.

Fran Rogers, M.S.N., CRNP, Immediate Past Chair

Mardi Gomberg-Maitland, M.D., M.Sc.

Loida A. Johnson, CRNP, Education Committee Chair

Anna Hemnes, M.D.

Tisha Kivett, R.N., B.S.N., 2021 Symposium Committee Vice-chair

Kristin B. Highland, MD, MSCR Steven Kawut, M.D., M.S. Tim Lahm, M.D. Deborah J. Levine, M.D. Lana D. Melendres-Groves, M.D. Ronald J. Oudiz, M.D., Chair John Ryan, M.D. Jeffrey Sager, M.D., MSCE Oksana A. Shlobin, M.D., FCCP Thenappan Thenappan, M.D. Corey E. Ventetuolo, M.D., M.S.

Susie McDevitt, R.N., M.S.N., ACNP, 2021 Symposium Committee Chair Melissa Magness, M.S.N., APRN, CNP-AC, Practice Committee Chair

Financials

2020 ANNUAL REPORT

23

PULMONARY HYPERTENSION ASSOCIATION, INC. | 2020 FINANCIALS* 2020 REVENUES

2020 PROGRAM SERVICES

2020 EXPENSES

Total Revenue & Support....................... $6,044,181

Total Expenses............................................... $5,377,997

67%

65%

Contributions, Grants & Research

50%

Program Services

16%

Promote Quality Patient Care

22%

Investments

26%

Management & General

13%

Empower Patients & Caregivers

13%

Advertising, Merchandise & Other Income

Total Expenses.............................................. $3,467,986

15%

Fundraising

Catalyze Research for a Cure

4%

9%

Dues & Registration Fees

Advocate for the PH Community

NET ASSETS OVER TIME

$14,063,758

2016

$16,761,527

2017

$15,890,551

2018

$19,169,046

2019

$19,355,231

2020 0

5

BY FISCAL YEAR ($ MILLIONS)

10

15

20

*These 2020 charts are based on preliminarily audited financials. Audited financials are usually available by the fourth quarter of the year.

Once complete, audited financial statements are available to review at PHAssociation.org/ accountability.

OUR MISSION is to extend and improve the lives of those affected by pulmonary hypertension.

OUR VISION is a world without PH, empowered by hope.

PHAassociation.org