A Year of Hope “PHA on the Road was fantastic! Even though I’ve been living with this disease for nine years, I learned new things, and meeting the newly diagnosed patients makes me want to continue to be involved and offer hope to others.” – Jeannie Kendrick, 2019 PHA on the Road – San Francisco
“What gives me hope in the pulmonary hypertension field is considering how much has changed in the last few years and how much there is on the horizon. That doesn’t just mean with medical research, but also what we are seeing with support groups growing, with connectivity between patients growing. A disease that was so isolating, so rare, there weren’t many opportunities to network. PHA has brought more and more patients together. They have opportunities to grow, learn, get educated and support each other...” – Dr. Sachin Gupta, pulmonologist and critical care physician, California Pacific Medical Center, San Francisco
“Back in late 2001 I was diagnosed with pulmonary hypertension. My PH specialist put me in WHO Functional Class IV. Yesterday, I heard from my current PH specialist that I am officially mild and stable with my PH. What a change it is! Over those almost 18 years, I have met so many wonderful people who also have this potentially devastating illness. I have lost many friends with it. But the advances in PH care over those years are little short of miraculous. New meds and better education are keys to fighting for a cure. To those I have met and come to love over these last 18 years, I thank you. To those who are working so hard for a cure, I thank you! And a very special shout out to PHA who fights for all of us.” – Jean Robart, former support group leader, Kentucky
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Pulmonary Hypertension Association
“When someone falls ill, that is misfortune. When government is in a position to help that person and does not, that is injustice and we must take action to rectify it.” – Rep. Jamie Raskin (D-Md.), PHPN Advocacy Day
Making an Impact in 2019
47
STATES/ TERRITORIES WITH SUPPORT GROUPS
8,070
77
12,231 ATTENDEES SERVED THROUGH
SUPPORT GROUPS
200
PHAACCREDITED CARE CENTERS
5,929
DONORS SUPPORTED 43 FUNDRAISERS
HOURS OF MEDICAL EDUCATION
SUPPORT GROUPS
440,358 WEBSITE USERS
397
ON THE ROAD REGISTRANTS
1,500+ SUPPORT LINE CALLS
546
48
PHPN SYMPOSIUM ATTENDEES
PATIENT REGISTRY SITES
1,178
WITH PATIENTS ENROLLED
= PHA-accredited PH Care Center = State/territory with PHA Support Group(s) 2019 PHA Annual Report
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Letter from PHA Leadership From the first meeting around our founders’ kitchen table to our boardroom today, the Pulmonary Hypertension Association (PHA) remains a proudly patient-focused and patientdriven organization. Our staff, volunteers and leadership work throughout the year on projects, events and activities that best fulfill our mission – to extend and improve the lives of all those affected by pulmonary hypertension (PH). The impact of these achievements – accomplished with our strategic plan’s key focus areas to guide us and our vision of a world without PH, empowered by hope, to inspire us – are described in this PHA 2019 Annual Report. The impacts we share with you here could only be achieved with our vast PHA community of volunteers who serve as leaders, organizers, mentors, advisers, researchers, clinicians, educators, supporters, donors and friends. At the heart of every achievement is the fact that so many of our PHA community, who volunteer to participate on committees, serve on the Board of Trustees, lead support groups, organize fundraisers and help plan our educational meetings and programs, are themselves individuals with PH, caregivers, family members, clinicians who treat PH and researchers dedicated to finding cures. We’re excited to share with you PHA’s 2019 highlights, that range from PHA’s successful 2019 PHPN Symposium to our robust and growing network of support groups that stretch from Puerto Rico to the Hawaiian Islands. From our newest educational materials designed with the input of our patient community to our expanding accredited network of Pulmonary Hypertension Care Centers (PHCCs) devised to provide the best care for individuals with PH, you’ll see a patient focus in everything we do. PHA is proud to be making important strides for the PH community in each of our strategic plan’s key focus areas – empowering patients and caregivers, promoting quality patient care, catalyzing research for a cure, advocating for the PH community and ensuring financial resources to meet our mission.
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Pulmonary Hypertension Association
In this year’s report, we want to share with you the impacts we made toward our mission and introduce you to a few of our volunteers who represent the passion and heart of PHA. We are continuously inspired and energized by volunteers like patient advocate Thekla McGinley, whose early experiences after her PH diagnosis inspired her to become a support group leader and advocate for better patient care in the legislative arena, and Board of Trustees member Nicole Creech, who volunteers to help find a cure and share her hope with others through her many leadership and mentor roles. The stories of Thekla, Nicole and others in this 2019 Annual Report truly convey the lasting impact of PHA in the lives of all those in our PH community. You’ll also meet one of the health care professionals who work in the field of PH who give hope to our PH community, Dr. Jane Leopold, whose research aims to to better understand, identify and treat PH, and Kimberly Jackson, a cardiology nurse who has developed patient education materials and attended advocacy events for PHA. None of the accomplishments in this 2019 Annual Report would be possible without the passion and commitment of our donors and supporters, like the late Carol Bowling and her family members who continue to fundraise in her name, and Randy and Aya Clark, whose annual donation helps build the community that supports them and others throughout their PH journey. These stories of our volunteers and supporters truly convey the lasting impact of PHA in the lives of all those in our PH community. Thank you to all of you for your generous support and involvement.
Brad A. Wong
Karen A. Fagan, M.D.
President & CEO
Board of Trustees Chair
Pulmonary Hypertension Association
Pulmonary Hypertension Association
Our mission is to extend and improve the lives of those affected by PH.
2019 PHA Annual Report
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Making a Difference for Those Affected by PH
PHA strives toward a world without pulmonary hypertension, empowered by hope.
Building a Community That Provides Hope Aya Clark hasn’t let pulmonary hypertension (PH) stop her from pursuing her passions. Recently retired, Aya and her husband Randy have begun to produce theater productions. Aya has been acting onstage, too — oxygen tank and all. Aya was diagnosed with idiopathic pulmonary arterial hypertension (IPAH) in 2016. After experiencing shortness of breath on a trip to Santa Fe, New Mexico, and a hike near her home in Tacoma, Washington, she knew something was wrong. “I’m very lucky to be diagnosed when I was,” she says. “It took only a few months to go from symptoms to diagnosis. I know that not everyone has that experience.” Randy immediately stepped up to be her full-time caregiver. He attends every doctor’s appointment and Pulmonary Hypertension Association (PHA) support group meeting, and he helps deliver her intravenous medication. “He has been the biggest source of my support,” Aya says.
WHAT IS PH?
The Clarks found PHA’s educational materials to be vital after her diagnosis. “There is so much out there about this disease, but PHA’s resources were by far the most useful,” Aya says. “They provided us hope at a scary time.”
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The couple understands the feeling of being overwhelmed about a disease they had never heard of. “We never knew anyone with PH before my diagnosis,” she says. “With a rare disease like this, it is so important that we have PHA. I’ve learned so much.” Aya and Randy contribute every year to PHA to ensure the association remains in their corner. “PHA fights every day for patients like me,” Aya says. “They are an advocacy force for the disease that I will live with for the rest of my life.” Donors like the Clarks allow PHA to fulfill the mission of extending and improving the lives of all those affected by PH. For the Clarks, their annual donation to PHA means building a community. “When the entire community comes together with PHA, we can truly make a difference.”
Pulmonary hypertension (PH) is a complex and often misunderstood disease. Characterized by high blood pressure in the lungs, PH frequently results from a narrowing of the small blood vessels in the lungs. Common symptoms include fatigue, shortness of breath, rapid heart rate and chest pain. As the right side of the heart works harder to pump blood into the lungs, it can become enlarged and weakened. Although PH has no cure, two decades of medical advancements have led to a variety of therapies that help relieve symptoms, improve quality of life and slow disease progression. Specialized care is critical to help diagnose and treat this complex disease.
Pulmonary Hypertension Association
OUR VISION:
REPORT SHORTNESS OF BREAT BREATH H
Brown LM, et al. Chest. 2011;140(1):19-26.
A Volunteer Who Lives PHA’s Mission In 2013, when Thekla McGinley was diagnosed with pulmonary hypertension (PH), she stayed away from support groups for several years because she didn’t want to talk about it — to anyone. Today, Thekla talks to everyone, even the governor of Arkansas. Finding medical professionals who could help her live with and understand the disease was not easy. As her diagnosis started to sink in, and finding proper treatment became one emotionally charged challenge after another, Thekla looked for answers and support online. She came across the Pulmonary Hypertension Association (PHA) website, and her life was forever changed. “If it weren’t for PHA and one particular pharmacist, I wouldn’t be here right now,” says Thekla, referring to the importance of obtaining quality treatment to help extend the lives of individuals with PH. She initially connected to the PHA via email and telephone; she soon joined Facebook groups and a nearby support group. Attending PHA’s International Conference left Thekla overcome with the “best normal feeling” since her diagnosis, and she sought ways to give back to the PH community. She talked to her U.S. senators and representative about the challenges of living with PH and how they could help. She even succeeded in getting Gov. Asa Hutchinson to sign a proclamation declaring November Pulmonary Hypertension Awareness Month. Now a highly involved patient advocate and PHA support group leader in Central Arkansas, Thekla believes that “no one should go through the hell I went through those first few years of living with PH.” She shows newly diagnosed individuals there is quality of life beyond the diagnosis, that life-changing support is available through PHA and they don’t need to face the many PH challenges alone.
“I realized I have a voice! This Congressman … now has a face and stories to remind him why he should support [PHA’s legislative priorities]. Enjoyed this very much and couldn’t have done it without help from PHA.” – Thekla McGinley, after making her first legislative visit 2019 PHA Annual Report
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Empowering Patients and Caregivers Resources Support the PH Community
IMPACT: • Creating community • Offering online and in-person support • Developing educational resources • Providing trusted and timely communications
In person, online or on the phone, the Pulmonary Hypertension Association (PHA) puts individuals affected by pulmonary hypertension (PH) in touch with someone who understands. Support groups all over the U.S. hold regular meetings to offer knowledge, support and empowerment for individuals with PH, their families and caregivers. Telephone support groups, email mentors, Facebook groups and a support line are ways in which PHA connects individuals affected by PH, including bereaved families and parents of children with PH, who may not be able to travel or who live in rural areas.
New resources for our pediatric community
Support and education reach the community through PHA on the Road, one-day free educational forums for patients and families offered in different locations every year, and PHA’s biennial International PH Conference and Scientific Sessions. Pathlight, PHA’s flagship magazine featuring articles by individuals with PH, family members and health care professionals along with news on PHA activities and resources, is sent to PHA members four times each year. Additional PHA publications are designed with the PH patient and clinician in mind, medically reviewed by experts in the PH field and designed to help individuals live their best lives with PH.
57 members in new parents Facebook group
PHA Classroom was redesigned in early 2019, providing a more user-friendly experience with improved navigation and complementary materials such as recipes, web links and printable reading material. Additionally, “Pediatric PH” and “En Espanol” are now searchable categories on the site.
7 pediatric support groups
200 SUPPORT GROUPS
397 PHA ON THE ROAD REGISTRANTS
Fielded 1,500+ support line calls Trained 72 new support group leaders 700+ meetings
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1,642 pediatric resource guides distributed to pediatric centers and families
Pulmonary Hypertension Association
173 in Kansas City, Kansas 224 in San Francisco
45 parents attended telephone support groups
PHASSOCIATION.ORG 440,358 Users 37% Increase
Inspiring Others With a Mission of Hope Nicole Creech was already a support group leader, a multi-faceted volunteer and an individual living with pulmonary hypertension (PH) when she joined the Pulmonary Hypertension Association (PHA) Board of Trustees. She is on a mission to develop hope and resiliency in others with PH and create an overall awareness of the disease. When she was first diagnosed in 2008, Nicole said, “I was in denial. I just put myself on autopilot.” After many years of adjusting to PH on top of the sickle cell disease she already lived with, Nicole felt better and began to wonder if she could help others. She wanted to encourage others in their own journey with PH, so she began volunteering with the association in 2016. Nicole chose to work with individuals who have just found out they have PH. One way she connects with them is through nurses, who hand out her business cards to new PH patients at her local hospital so they can call her for support. “I remember how I felt when I was first diagnosed, and I just want to give others hope,” said Nicole. “There is a lot to deal with when you’re first diagnosed, and I hope I can take some of the fright out of it for those new to PH.” Focusing on newly diagnosed men, women and children, Nicole met with them at their homes, in hospitals or at the local bi-monthly support group she led in Lexington, Kentucky, to give them comfort, support and new medical information from PHA and her PH care center. Her group included 23 regular members, including an 8-year-old child. In an effort to make a bigger impact on how PH is viewed in the health care community on a national level, Nicole traveled to Washington, D.C., to advocate to elected officials on behalf of PH patients. Nicole sees her voice as a patient advocate amplified as she “helps PHA help us [people living with PH].” To reach a wider audience with her message of hope, Nicole has been involved running two Facebook groups, serving on the PHA Support Group Leader Advisory Board, and helping with the support group leader mentorship program and regional support group leader trainings. Nicole says she is glad she can give back in so many ways. Her work to bring hope to individuals and their families who are new to PH is at the heart of PHA’s mission and vision.
2019 PHA Annual Report
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2019 PHPN Symposium
A record number of clinicians attended PHA’s 2019 PH Professional Network (PHPN) Symposium, “Influencing the Practice: The Art and Science of Treating Pulmonary Hypertension,” in Washington, D.C. The September event brought together PH-treating health care professionals to learn and earn continuing education from 30 sessions. The three-day event provided opportunities to share research and network with colleagues. Among the most popular sessions: • Updates from the 6th World Symposium on Pulmonary Hypertension • Heritable Pulmonary Arterial Hypertension: What Every Clinician Should Know in 2019 • Implantable System for Remodulin for PAH: Free at Last... or Maybe Not! • Debate: To Treat or Not Treat mPAP of 20-24 • Debate: Initial Triple vs. Sequential Combination PAH Therapy • Evolving Landscape of Chronic Thromboembolic Pulmonary Hypertension Management
SYMPOSIUM set a number of records in 2019
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Pulmonary Hypertension Association
IMPACT: • Educating clinicians • Sharing research • Improving patient care • Raising awareness on Capitol Hill
“...an amazing opportunity to meet world thought leaders on the best course of treatment.” – UCLA Medical Center Resident Ken Chin, M.D.
Abstracts in the Poster Hall raised for PHA’s Conference Scholarship Fund
Attendees
Advocacy Day 2019: Your Voice Matters Kimberly Jackson, R.N., B.S.N., likes to say she wasn’t drawn to PH; “PH was drawn to me.” Kimberly, a member of the Pulmonary Hypertension Association Board of Trustees, began her career 27 years ago as a cardiology bedside nurse before moving to a private cardiology practice. About 10 years ago, she started working primarily with pulmonary hypertension (PH) patients and five years ago became nurse cardiovascular coordinator for Gill Heart and Vascular Institute Pulmonary Hypertension Clinic in Lexington, Kentucky. Unlike many of her patients with coronary artery disease, there was no “fix” for those with PH. “With these patients, you know there’s not a cure. Your goal is to make their quality of life as good as you can. We’re constantly working to help them try to feel better.” She noticed the PH community’s closeness in 2012 when she attended her first PHA PHPN Symposium. “Everyone was so kind and encouraging ... The common purpose is to take care of these patients and advocate for them. The love they have for their patients drew me. They want to make sure their patients are getting what they need, and it made me want to be a part of that.” She led an effort on the PHPN Education Committee to develop a series of worksheets for clinicians to share with their patients. Since then, her PHA involvement continues to grow. In 2017, she attended her first PHPN Advocacy Day. She returned in 2019 to share patient stories with legislative staff on Capitol Hill and discuss high health care costs for PH patients. “A lot of people don’t know much about PH. Some of the people we talked to had never heard of it. It’s really important that we educate people on that.” “[The legislative staff] really listened and were willing to take it a step further,” she says. “But there’s a whole lot of work that still needs to be done.”
2019 PHA Annual Report
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Advocating for the PH Community Hundreds of Voices Raise Awareness
IMPACT: • Raising awareness of PH • Improving insurance and treatment access through advocacy • Sharing news and stories to create community and address needs
World PH Day, Pulmonary Hypertension Awareness Month and CTEPH Awareness Day raise awareness of PH among people at risk and those who unknowingly live with PH, health care professionals, elected officials and the general public. In 2019, PHA encouraged the PH community to share how they live with hope as part of PHA’s awareness activities. Go online at PHAssociation.org/PHacesofHope to read more than 60 inspiring stories from individuals with PH, family members and caregivers who shared daily throughout November and December.
11,000+
Users of PHAssociation.org/ Awareness-Month
12
Pulmonary Hypertension Association
50,000+ 8,000+
Viewed CTEPH videos
Engaged with social media posts
60
days of PHaces of Hope
PHA Advocacy Makes REMS Program Safer and Easier When generic ambrisentan became available in 2019, the Food and Drug Administration (FDA) allowed the Ambrisentan REMS Consortium to create two Risk Evaluation and Mitigation Strategy (REMS) programs. Patients had to enroll in both programs in case their health insurance or specialty pharmacy switched manufacturers. Health care professionals soon started telling the Pulmonary Hypertension Association (PHA) that the programs were confusing and difficult to navigate. “The existence of two Ambrisentan REMS program resulted in shipment delays, confusion and extra bureaucracy that not only exponentially increased the burden on PH clinical staff, but ultimately prevented timely patient access to medical therapy,” said Juliana Liu, R.N., M.S.N., ANP-c, of the Stanford Pulmonary Hypertension Program. PHA began working to streamline the standards to improve patient safety. Based on feedback from people with pulmonary hypertension (PH) and health care providers, PHA presented seven recommendations to the FDA and the manufacturers consortium. The top recommendation was to merge the two REMS programs to cover all ambrisentan manufacturers. Juliana, who had a leading role in crafting and presenting PHA’s REMS recommendations, said the merger, which was approved and completed in spring 2020, was the best outcome the PH community could have hoped for. “With this merge, we know that the work of the clinical staff at the PH centers will greatly decrease, and as a result, access to care will become easier and ultimately prevent needless delay in care.” In addition to convincing the manufacturers to consolidate the REMS programs, PHA’s advocacy prompted the consortium to clarify when REMS allows physicians to override pregnancy test requirements. PHA also succeeded in persuading the manufacturers to improve pharmacist and clinician education about the process. “The newly merged Ambrisentan REMS program will allow patients access to their medications and reduce the administrative load placed on PH centers,” said Jeffrey S. Sager, M.D., M.Sc., FACP, FCCP, director, Cottage Pulmonary Hypertension Center, Santa Barbara, California. “We will continue to work to streamline this process so that patients are not left without medication and … protect our patients who are of child-bearing potential, “ said Dr. Sager, who helped craft and present the PHA recommendations. 2019 PHA Annual Report
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Improving Quality Patient Care
IMPACT: • Educating clinicians to improve care • Accelerating research through patient registry • Accrediting a network of trusted care centers and programs
Keeping PH-Treating Professionals Up-to-Date Advances in Pulmonary Hypertension, which moved exclusively online in 2019, aims to assist physicians and non-physician clinicians in their clinical decision making by informing them of important trends and providing an analysis of the impact of new findings in PH. Visitors, who come from 144 countries, read 65% more journal articles in 2019. Subscribers are up 83% since 2017.
Continuing Medical Education Primary Care 34.3%
Educating clinicians about PH is a continuous effort at PHA that aims to improve patient care. • PHA’s PHPN Symposium brings together researchers and medical professionals to learn about the latest scientific advances and treatment options while earning continuing education credits and networking with colleagues from around the U.S. • A new more user-friendly platform for PHA Online University led to a 67% increase in CME/ CE certificates. PHA Online University allows health care professionals access to the latest information on PH and the ability to earn free continuing education credits. • The PHA Preceptorship and PHA Medical Education On-Demand programs provide opportunities for medical professionals to improve their competence, performance and patient care practices through in-person programs.
Cardiology 28.3% Pulmonology 22% Pediatrics 3.3% Other 12.1%
Last year for the first time, primary care physicians (PCPs) taking PHA classes outnumbered other specialities. In 2018, 24% of CME learners were PCPs.
In 2019, PHA provided 5,929 hours of medical education through:
41
On-Demand programs
14
Pulmonary Hypertension Association
4
Preceptorships
647
Learners registered through new PHA Online University platform
30
Hours of CME accredited sessions at PHA’s PHPN Symposium
Expanding Patient Registry and Accredited Care Centers To increase access to quality pulmonary hypertension (PH) care and ultimately improve outcomes for individuals with PH, the Pulmonary Hypertension Association (PHA) continues to expand a nationwide network of PHA-accredited adult and pediatric PH Care Centers (PHCCs). In 2018, PHA accredited 15 additional Centers of Comprehensive Care and seven Regional Clinical Programs for a total of 77 PHAaccredited PHCCs. Fourteen sites were reaccredited in 2019. Through these accredited centers, which serve more than 12,000 patients, PHA aims to provide PH patients better access to evidence-based diagnosis and treatment along with a broader range of medical expertise and services. PH Care Centers also provide patients standardized, expert care and deliver patient education. The PHCC program provides centers with increased opportunities for collaboration on clinical care and PH research.
PHA has supported accredited centers participating in PHAR with data analyses of research questions to help improve patient care and to better understand the disease. Data collected on the disease progression, experience and outcomes of individuals of all ages with PAH and CTEPH helps researchers evaluate trends and improve practice as they determine what treatments work best. This data is being used to help inform best practice. PHAR researchers using this data have published papers and presented at numerous conferences, creating the promise of new clinical associations in patients across the spectrum of PH.
PHAR Participant Ages
PHCCs also help facilitate improvements in adult and pediatric PH patient care through involvement in the Pulmonary Hypertension Association Registry (PHAR), which enrolls patient volunteers who are starting evaluation and/or treatment at a PHCC. This multi-center patient database collects demographic characteristics, results of diagnostic tests, PH-specific treatments and quality of life metrics from people with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH).
1,178 Patients in PHAR
77
PHA-accredited PH Care Centers
18-30 31-50 51-70 71+
48 PHCCs
participating in PHAR
8
Pediatric CCCs
2019 PHA Annual Report
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Catalyzing Research for a Cure
IMPACT: • Accelerating research toward a cure • Funding promising research
Supporting Research to Unlock Mysteries PHA supports a wide range of research to improve the quality of life of people with pulmonary hypertension (PH) and accelerate innovative research and treatments to find a cure for PH. The “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics” (PVDOMICS) is a groundbreaking study funded through a partnership with the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health (NIH). The project allows scientists to explore how cellular, genetic and environmental factors can affect the progression of PH, leading to improved PH diagnosis and treatment.
initiate new conversations between patients and their PH specialists about whether or not participating in research is right for them and, if so, how to get involved.
PHA supported the next generation of PH physician-researchers and scientists through a pediatric grant, a young investigators’ award and a fellowship, leveraging funding through a Foundation of the American Thoracic Society (ATS) partnership. In 2019, PHA launched Clinical Trial Finder, a new online tool that captures information directly from ClinicalTrials.gov. The search feature generates a list of relevant trials that can be filtered by location, disease type and demographic characteristics, making it easier for PH community members to find information on research most relevant to them. PHA hopes the information in this resource helps
2019 PHA-Funded Grants PHA/ATS Research Fellowship in Pulmonary Arterial Hypertension Rahul Kumar, Ph.D. University of California, San Francisco
PHA Aldrighetti Research Award for Young Investigators* Ke Yuan, Ph.D. Boston Children’s Hospital *Sponsorship provided by Actelion Pharmaceuticals U.S., Inc.
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Pulmonary Hypertension Association
PHA Robyn J. Barst, M.D., Pediatric PH Research & Mentoring Grant in honor of Jackson Wall Jason Boehme, M.D. University of California, San Francisco
Behind the Biomarkers: Cardiologist Seeks Clues About 25 years ago, cardiologist Jane Leopold, M.D., noticed that people with pulmonary hypertension (PH) differed from her typical cardiac patients with chest pain and heart attacks. Patients with some forms of PH were younger, sicker, had more physical limitations and seemed to be hospitalized more frequently with heart failure, shortness of breath and other issues. Despite many advancements in PH diagnosis and treatment since then, researchers still need to better understand the disease to identify and develop the right drugs to make people feel better and live longer, says Dr. Leopold, director of the Women’s Interventional Cardiology Health Initiative at Brigham and Women’s Hospital in Boston. “What we have is still not good enough.” Dr. Leopold is among the investigators of a pulmonary vascular disease omics (PVDOMICS) study funded by the National Institutes of Health, National Heart, Lung, and Blood Institute and the Pulmonary Hypertension Association (PHA). One aim of the study, “Redefining Pulmonary Hypertension through Pulmonary Vascular Disease Phenomics (PVDOMICS)”, is to identify biomarkers to improve PH diagnosis and treatment. The study will help Dr. Leopold and her colleagues find subgroups of patients that cluster together within and among the five PH groups based on underlying causes, and the findings could upend the current PH classifications. Investigators believe they will find more alike people within the subgroups than within their “assigned” groups. This will provide new information about disease severity, life expectancy and response to medication. They also want to learn whether people stay in the same subgroup or shift among them over time. “Patients never fall neatly into a single category, and those within each group are really different from each other. Let’s find out what the new groups should be, based on blood samples and clinical testing.” The research wouldn’t have been possible without PHA and people with PH enrolled in the study, Dr. Leopold says. “There’s going to be a lot interesting information from this study. For the first time, we can compare patients with PAH and those with CTEPH or PH related to other diseases.” Ideally, Dr. Leopold would love to see the study expand to other centers throughout the United States. “We need to get people to come into the study with really different backgrounds and experiences to find out how this affects the disease process.” Dr. Leopold hopes her work to better understand, identify and treat PH will improve the patient journey and decrease the times patients are misdiagnosed. 2019 PHA Annual Report
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Raising Funds to Achieve PHA’s Mission Connecting Communities Through Fundraising
Team Isla Grey
Heidi Schusler, who was diagnosed with pulmonary hypertension (PH) in 2018, created team Heidi’s PHighters to walk in PHA’s 2019 Philadelphia O2breathe Walk. “This walk will help spread awareness of this disease as well as raise much needed funds for further research and development,” says Heidi. She raised nearly $6,000 to support PHA’s programs and services.
Jennifer and Joe Morrow created Team Isla Grey to walk in the 2019 ZebraPHest 5K and PHun Walk in Dallas, Texas. The team honors their daughter Isla, a child with PH. “Here we are – parents of a beautiful 6-year-old girl and a family 100% committed to raising awareness for PH,” the Morrows say. Their team raised almost $9,500 for PHA.
43
PHA Members
8,070
O2breathe events and community fundraisers
Donors and volunteers of fundraisers Pulmonary Hypertension Association
GIVING TUESDAY
Team Heidi’s PHighters
4,863
18
IMPACT: • Raising funds • Raising awareness • Building community
Thanks to an $18,000 match from the Doerge and Blesi families, an email and social media campaign for Giving Tuesday raised $69,819 to support PHA’s missiondriven programs and services. The recordbreaking fundraiser was held in honor of their daughter Zoe’s 18th birthday and is the highest amount ever donated to PHA during this national event.
Honoring an Unstoppable Volunteer Carol Bowling was determined to make the best of her life after she was diagnosed with pulmonary arterial hypertension (PAH) at age 50 and stage four lymphoma 10 months later. “Throughout her life, Carol faced many obstacles with fierce determination and the grace to accept what she could not change,” Cathy Abela, Carol’s sister, says. After Carol was diagnosed with PAH, she was determined to learn more about her illness. Her doctor gave her information about the Pulmonary Hypertension Association (PHA), and Carol became involved in the local PHA support group. “PHA gave Carol the feeling of empowerment and control through the knowledge and contacts she made,” her husband Michael Bowling says. “Carol was not going to let the disease control her and through PHA she became an active and powerful voice in the PH community. Through her mentorship and example, Carol showed it is possible to live a full, meaningful, fun life with PH and not just exist.” Carol attended many PHA conferences and became a volunteer. She was known for her Minnie Mouse headband and positive attitude. She was a co-leader of the PHA Sacramento Support Group and supported others living with PH. “We watched in amazement as Carol was able to balance her cancer and PH treatments while reaching out to others … and teaching many people how to live with their diseases,” Cathy recalls. “She touched the hearts of all who met her and changed their lives forever.” When Carol passed away in March 2019, her family carried on her commitment to PHA by leading a fundraising team. Their “Team Carol Bowling” in the 2019 Northern California O2breathe Walk raised money for PHA in Carol’s memory. “Carol was unstoppable,” Cathy says. “We wanted to honor Carol by getting as many people as possible to support this cause.” Cathy led the team with their mother, Pat, and Michael. The team, which raised more than $5,000, was the top fundraising team at the 2019 Northern California O2breathe Walk. “[We knew] the donations would be used wisely to support children, teenagers and adults with PH and their caregivers,” Michael says. 2019 PHA Annual Report
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2019 Donors $1,000,000+ Estate of James Ryan $100,000 – $999,999 Barbara Lee Smith Trust $25,000 – $99,999 S&S Electric Co. Inc. The Hamill Foundation $10,000 – $24,999 Aya and Randy Clark Janet Cuttner Robin B. Doerge Estate of Phyllis M. Hill James Kenney Shale Lapping Michel Lentz Forrest and Stewart Priddy Jan and Eric Skuldt sMiles for Katie Inc. Pauline M. Vance $5,000 – $9,999 Adams and Reese LLP Frederick and Sally Blesi Jason Browne Sheri and Frank Cann Care Dimensions Hospice House City of Countryside, Illinois Ramona Doyle and Amy Kindrick DPR Construction First Bethany Bank & Trust Katherine and Donald Gray Bill and Patti Hoff INOVA Fairfax Hospital Robert J. Kirke 20
Pulmonary Hypertension Association
Dina and Joseph Kruger Harkisan Laheri Glenn and Lynn Layton Real Estate One Charitable Foundation The Swoff Family The Charles & Marion Weber Foundation The Louis J. and June E. Kay Foundation Stephen L. White Kenneth R. Zoanetti $2,500 – $4,999 Baylor Scott & White Healthcare Baylor University Medical Center Bob Betz Shawn Bilodeau Rebekah Calverley Coby Madison Jewelry Marsha Corey Durham Foundation Ellie Mae Fund Karen A. Fagan Mary A. Felkel Kelly Gatewood Andrew and Courtney Griffin LaVerne D. Henderson Andrew Hoover Integris Health Integrity Restoration & Remodeling Contractors Johns Hopkins All Children’s Hospital Billy Johnson Kaiser Permanente-California John Kellow Estate of Dr. Sarah Kathleen “Sally” Maddox John and Elizabeth “Betsie” Miklos Moran Environmental Recovery Alice Muson-Wood John Nooncaster
Northside Hospital Healthcare System Philip E. Paroian Timothy J. Pearsall Vivian S. Peek Prashant Raval Robertson Family Water Inc. Hari and Subha Srinivasan TCF Foundation Temple University Roger K. and Deborah J. Towle University of Rochester Medical Center UT Southwestern Medical Center Lynne M. Vandenakker Wall’s Welding & Mechanical Inc. Warco Construction Inc. $1,000 – $2,499 Rino Aldrighetti AmVets Ladies Auxiliary Post 312 Leslie Arnold AstraZeneca Pharmaceuticals Atlantic Commercial Caseworks William R. Auger Christina A. Back David B. Badesch Katie and Wynn Bailey W. M. Bates Bath Saver Inc. Eugene Beckman Bemis Associates Nick Bernardo Anna Bernus Ethalinda Blackman Andrew and Rutha Bowers Penelope and Martin Bowin Tanya Bradby and Martin Slovacek Nicholas C. Braun Karen S. Briggs Arthur and Karen Broadhurst Broadhurst Tabit LLP Braden Buehler
Todd M. Bull Azalea Candelaria Linda and Austin Carr Martha and Delwood Carr Karen Cavanaugh Central California Faculty Medical Group Thomas E. Clauss CSAA Insurance Group Julie and John Danstrom Todd DellAquila Geraldine Dellinger Victor M. Dillingham Doctors Hospital Ruth Dorse Doreen A. Duffy Gary Dukart Harry Eighmy Saleh Eldam Emporium Sports Bar EnterSource Expedia Group ExxonMobil Dana and Eric Falk Steven Feril Paul Finelt Ann Flood Freddie Mac Gap Christine Garcia Barry and Marianne Garigen David and Lisa Gatewood General Air Compressors North Sally and Henry Gentsch George Washington University Hospital Jennifer Goguen Mary and Dean Goldbeck John Gottbrath Chris Gottbrath Thomas and Mary Grape Amelia Gresko
Wendy Griggs Hackett Brothers Automotive Patricia L. Hellyer Donna and Robert Hershey Hillsborough Plumbing Company Asako U. Igawa Interior Architects Mani Jafari Carrie Jernigan Michael Johnson Johnson & Johnson Stanley T. Jusinski Daniel Kawato Elaine Keller Kevin Kondry Andrew Klein Jessie Kohler Kevin Klein Mitchell and Debbie Koppelman Mollee Kruger Rhonda Kuntzman Candace and Steve Learman Learman Family Donor Advised Endowment Fund Guy Lemire Lauren Limon Michael A. Locricchio Peter B. Lodewick Tracey Macchi Shelby H. Maddox Sandra Matteucci James L. McAllister Chandra McCall Bonnie and Michael D. McGoon Jenna McKeel Stephanie McLemore The McNiff Family Merck Microsoft David K. Moreland Alex Morris
Joe Morrow Mott Charitable Trust Murfreesboro Medical Clinic PA Michael S. Murphy Chetan Naik Neuberger Berman Alan G. Ng John E. Nino Robert Olson Ontario Systems Roseanne H. Osmanski Painters Union District Council 14 Palmerton Porpoise Swim Team Muktesh and Vinita Pant Ruth Passmore Patricia A. Kaiser Family Trust Peter Pierce Richard and Nadia Pilat Pitt Electric Susan and John Poduska Kathy Ramirez Rare Patient Voice Curtis Robillard James Roe Mary B. Rogers Ralph G. Rood Saint Louis Pediatrics Associates San Bernardino County Professional Firefighters Local 935 Keith Sanborn Salvador and Josephine Sanchez Elizabeth Sanders and Eric Funk Robert D. Sayer Trevor S. Schneider Robert Schuerger Deborah and Olivia Shelton Justin Shingleton Nicholas Simons Judith and Edwin Simpson Rebecca and James Smirk Alastair Smith and Susan Yun
Antoinette and John Sperando Sandra and Luiz Spiezio Springer India Nancy St. Pierre St. Anthony Society Stanford University Medical Center State Farm Traci L. Stewart STMicroelectronics Stout Transportation LLC Team Electrical Contracting The C.H. Hanson Company The Carl M. Freeman Foundation Inc. The University of Pennsylvania Sara F. Thomson Terry Todd University of Pittsburgh Medical Center Al and Kristi Vculek Charlene Vener W&W AFCO Steel Jim Wasserman Rick and Char Weaver Dorothy Weiner R. J. White and April Luehmann Amanda C. Wielgus Mike Willis Joel A. Wirth John Wittenberg Mark R. Wittenstein Brad A. and Julia A. Wong Jacqueline Woosley John and Georgiana Wright Robert J. Zamberlan
2019 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. Actelion Pharmaceuticals US, Inc. United Therapeutics Bayer CVS Specialty Gilead Sciences, Inc. Accredo Acceleron Pharma Liquidia Technologies AllianceRx Walgreens Prime Reata Pharmaceuticals, Inc. BriovaRx Altavant Sciences Complexa, Inc. Gossamer Bio
We care about errors in omission, please contact us at Giving@PHAssociation.org
2019 PHA Annual Report
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PHA Leadership PHA Board of Trustees Karen A. Fagan, M.D., Chair, treats adults with PH Colleen Brunetti, M.Ed., C.H.C., Chair-Elect, adult with PH Roger Towle, Immediate Past Chair, bereaved parent of child with PH William A. Hoff, Treasurer, widower of adult with PH Diane Ramirez, Secretary, adult with PH Trustees-at-Large Cheri Abbott, R.N., CCRP, retired PH-treating medical professional Erika Berman Rosenzweig, M.D., treats children with PH Frank Cann, family member of adult with PH Murali M. Chakinala, M.D., FCCP, treats adults with PH Colleen Connor, adult with PH Nicole M. Creech, adult with PH Ramona Doyle, M.D., M.Sc., treats adults with PH Stacey Gausling, O.T., adult with PH Amy Kimber, R.N., APNP, treats adults with PH Jessie Kohler Wenninger, Esq., adult with PH Mitch Koppelman, Ph.D., spouse of adult with PH and bereaved parent of children with PH Tony Lahnston, bereaved family member of child with PH Ronald J. Oudiz, M.D., treats adults with PH Monica M. Penaranda, adult with PH Fran Rogers, M.S.N., CRNP, treats adults with PH Traci Stewart, R.N., M.S.N., CHFN, treats adults with PH Doug Taylor, adult with PH Matt Wall, parent of a child with PH Melisa A. Wilson, ARNP, ACNP-BC, treats adults with PH 22
Pulmonary Hypertension Association
Brad A. Wong, PHA President & CEO Emeriti ex-officio C. Gregory Elliott, M.D., FCCP, MACP, treats adults with PH Michael D. McGoon, M.D., retired physician who treated adults with PH Jerry Paton, spouse of adult with PH Pat Paton, R.N., adult with PH Edwin Simpson, bereaved family member of adult with PH Judith Simpson, R.N., Ed.S., bereaved family member of adult with PH Honorary Carl Hicks, bereaved parent of a child with PH
Scientific Leadership Council Ronald J. Oudiz, M.D., Chair Murali M. Chakinala, M.D., FCCP, Chair-Elect Erika Berman Rosenzweig, M.D., Immediate Past Chair Steven Abman, M.D. William R. Auger, M.D. Sonja Bartolome, M.D. Todd M. Bull, M.D. Kelly Chin, M.D. Lorinda Chung, M.D. Vinicio A. de Jesus Perez, M.D., FCCP, FAHA Teresa De Marco, M.D. Ankit A. Desai, M.D., FACC, FAHA Jeffrey Fineman, M.D. Robert P. Frantz, M.D. Mardi Gomberg-Maitland, M.D., M.Sc. Anna Hemnes, M.D. Steven Kawut, M.D., M.S. Tim Lahm, M.D. Deborah J. Levine, M.D.
Roberto F. Machado, M.D. Stephen C. Mathai, M.D., M.H.S. Lana D. Melendres-Groves, M.D. 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. Timothy L. Williamson, M.D. Joel A. Wirth, M.D. Delphine Yung, M.D. Liaisons Fran Rogers, M.S.N., CRNP Cheri Abbott, R.N., CCRP Nicole Reid, R.N., B.S.N., DABAT Distinguished Advisors David B. Badesch, M.D. Bruce H. Brundage, M.D. Richard Channick, M.D. C. Gregory Elliott, M.D., FCCP, MACP Karen A. Fagan, M.D. Michael D. McGoon, M.D. Vallerie V. McLaughlin, M.D. John H. Newman, M.D.
PH Professional Network (PHPN) Executive Committee Fran Rogers, M.S.N., CRNP, Chair Cheri Abbott, R.N., CCRP, Chair-Elect Amy Kimber, R.N., APNP, Immediate Past Chair Mary Bartlett, M.S., R.N., C.S., F.N.P. Johnell Diwan, B.S.N., R.N. Kimberly Jackson, R.N., BSN Martha Kingman, D.N.P., FNP-C Tisha Kivett, R.N., B.S.N. Susie McDevitt, R.N., M.S.N., ACNP
Pulmonary Hypertension Association, Inc. 2019 Financials* 2019 Revenues
2019 Expenses
2019 Program Services
Total Revenue and Support: $10,194,110
Total Expenses: $6,915,615
Total Expenses: $4,878,790
Contributions, Grants and Research
Program Services
Promote Quality Patient Care
Investments
Management/General
Empower Patients and Caregivers
Advertising, Merchandise and other income
Fundraising
Catalyze Research for a Cure
Dues and Registration Fees
Advocate for the PH Community
Net Assets Over Time 20,000,000
$15,890,551
2016
$16,761,527
2015
$14,063,758
5,000,000
$16,194,319
10,000,000
2017
2018
$19,169,046
15,000,000
*These 2019 charts are based on unaudited 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.
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Our mission is to extend and improve the lives of those affected by PH. Our vision is a world without PH, empowered by hope.
