PHA ANNUAL REPORT 2020
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PULMONARY HYPERTENSION ASSOCIATION
Letter from Leadership
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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
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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
