ANNUAL REPORT. Making a Difference

Transcription

1 2017 ANNUAL REPORT Making a Difference 1

2 Dear Friends, Thank you for your ongoing support and interest in the COPD Foundation. With your help, we have been growing our programs as we continue to engage, educate and empower individuals affected by COPD. We are working to raise awareness of COPD, influence public policy and advocate on behalf of all people impacted by this disease. As you read this report, you will see how busy our dedicated team of staff and volunteers has been over the past year. Research remains a top priority for the Foundation. We are partnering with several organizations, including the Patient-Centered Outcomes Research Institute (PCORI), to conduct critical research projects; more than 6,000 individuals now participate in our COPD Patient-Powered Research Network (COPD PPRN) to help find solutions to real-world problems. This year, our work in the public policy and advocacy arenas has resulted in unprecedented outcomes, including the publication of the first-ever COPD National Action Plan, a multifaceted blueprint for combating this disease. The COPD Foundation was instrumental in bringing essential stakeholders, especially patients, together to help create this groundbreaking report. Care delivery and community programs also remain at the foundation of our work. Earlier this year, we gathered stakeholders from hospitals across Connecticut to translate readmissions reduction theory into best practice and develop workable solutions in their communities. This will serve as a model for meetings that can be conducted in regions and states across the nation. Finally, we continue to build our online platform as a resource for patients and all individuals affected by COPD. More than 30,000 people from around the world have joined our evolving COPD360social community. Our unique platform not only serves as a powerful tool to disseminate accurate, up-to-date and trusted information but also is a vital resource to connect patients, caregivers and providers. Unfortunately, we must also share some sad news. This past March, John W. Walsh, the founder and leader of the COPD Foundation, passed away. John was a passionate advocate for COPD research and treatment and his death is an incredible loss for the entire COPD community. Our thoughts remain with his wife Diane, daughter Linda and the extended Walsh Family. We continue to work each day to pursue his dream of improving the lives of all who are impacted and ultimately curing COPD. Thank you again to all of you who are working to help us defeat this devastating disease. Sincerely, Craig Kephart, Chief Executive Officer Byron M. Thomashow, MD, Chairman, Board of Directors 1

3 ABOUT THE COPD FOUNDATION MISSION The COPD Foundation s mission is to prevent and cure chronic obstructive pulmonary disease and to improve the lives of all people affected by COPD. The COPD Foundation, a 501(c)(3) nonprofit organization, was founded in 2004 and currently has offices in Miami, FL and Washington, DC. The Foundation was established to undertake initiatives that result in expanded services for individuals with chronic obstructive pulmonary disease (COPD) and to improve the lives of those individuals affected by COPD. The Foundation s activities focus on achieving these results through research, education and advocacy programs that will lead to the prevention and a cure for this disease. ABOUT The COPD360 o initiative strategically aligns the goals of all COPD stakeholders, including COPD patients, caregivers, healthcare professionals, healthcare providers, philanthropic foundations, government organizations and our research and industry partners. COPD360 o provides a holistic, wraparound approach to all our efforts, specifically research, community engagement and advocacy. It supports faster progress towards treatments and cures for the many subtypes of COPD that have been defined through our research collaborations. Our ultimate goal is to engage directly with the entire COPD community to create an environment that opens pathways to cures for COPD in the future and improves the lives and outcomes of individuals with COPD today. 2

4 Remembering John W. Walsh On March 7, 2017, The COPD Foundation and the entire COPD community suffered a tremendous blow when our founder, John W. Walsh, passed away. John will be remembered not only for his pioneering work in the field of respiratory health but also for his tireless advocacy on behalf of the millions worldwide with COPD. A former Army Ranger and successful businessman, John s life changed forever when he and his twin brother Fred were both diagnosed with Alpha-1 Antitrypsin Deficiency, a rare and at that time little-known genetic form of COPD. In his usual way, John began searching for answers and created the Alpha-1 Foundation and, in 2004, started the COPD Foundation. Through the COPD Foundation, John fought to increase research funding, bring innovation to drug therapies and create a one-stop shop for COPD and those affected by the disease. Dare to believe that ordinary people affected by a life-threatening illness can raise its awareness from the depths of obscurity. John W. Walsh John s voice changed the way research studies are designed and executed, the way industry views the patient voice and even changed the way patients are integrated into medical education. John dedicated much of his life to his commitment to speeding the development of new therapies and a cure for COPD. The COPD Foundation remains strongly committed to furthering John s passion to engage, educate and empower patients, helping to improve their lives as it searches for a cure. 3

5 For John Walsh, there was never a mountain too high to climb, never a barrier too great to overcome and never a dream that couldn t be made into a reality. Byron Thomashow, MD, Chairman, COPD Foundation Board of Directors John was our champion and my hero He was truly the real deal and how fortunate we ve been that he came into our lives. Edna Shattuck, person with COPD and member, COPD Foundation Board of Directors As an advocate, as a friend and as a visionary, he was simply indefatigable. Craig Kephart, COPD Foundation Chief Executive Officer I don t even know how to express what I am feeling right now. I am so very sad. I first met John about 10 years ago and it didn t take long before I realized that here was a man who was going to make big changes in the way the world thought about COPD and in my life as a patient. Karen Deitemeyer, person with COPD and Florida State Advocacy Captain He did so much for the Alpha-1 and COPD community locally, nationally and internationally. He has left an indelible mark in the hearts, minds and lungs of all who knew him. Val Chang, person with COPD and Hawaii State Advocacy Captain In his youth, John W. Walsh was an actual warrior. The tenacity and courage he brought to his years in the military served him throughout his life. They were tempered by the enthusiasm and optimism he brought to every challenge, the inspiration he provided to every fellow COPD patient. John s real legacy is the spark he created in all of us that we must nurture. He led us by example. The torch has been passed for us to continue as warriors for COPD. Grace Anne Dorney Koppel, person with COPD and COPD Foundation Board of Directors 4

6 RESEARCH COPD360research COPD360research encompasses the COPD Foundation s entire research infrastructure. This includes the COPD Patient-Powered Research Network (COPD PPRN) with its extensive capabilities, including longitudinal follow up and the ability to leverage the COPD PPRN platform to add additional surveys and substudies; partnerships with critical studies like COPDGene and SPIROMICS; the bronchiectasis and NTM research infrastructure as well as clinical and demonstration studies. COPD360research provides a critical role for the patient in all stages of research, including study development design, implementation and dissemination. COPD Patient-Powered Research Network The COPD Patient-Powered Research Network (COPD PPRN) is a patient-reported registry that offers an opportunity to participate in survey-based research and provides a platform for patients to learn about additional research opportunities. COPD patients and those at risk for COPD may choose to enroll in the COPD PPRN and complete a baseline survey including measures such as demographics, vitals and disease specifics. By enabling researchers, patients and clinicians to interact directly and to determine research priorities jointly, the clinical research becomes more patient-centered and focuses on their needs. The COPD PPRN will enable us to strengthen our research capabilities and also engage more individuals with COPD in the process to ensure our efforts are reflective of their needs. To date, more than 6,000 people have enrolled in the COPD PPRN. THE PATIENT POWERED RESEARCH NETWORK 5

7 Bronchiectasis Research Consortium and Registry The Bronchiectasis and NTM Research Registry (BRR) is a consolidated database of non-cystic fibrosis (non-cf) bronchiectasis and/or Nontuberculous Mycobacteria (NTM) clinical institutions across the United States. The goal of the registry is to support collaborative research and assist in the planning of multi-center clinical trials for the treatment of non-cf bronchiectasis and/or NTM lung disease. By the end of June 2017, more than 2,200 people had enrolled in the registry. Building upon the success of COPD360social, we launched an online global social networking platform for individuals affected by bronchiectasis and NTM: BronchandNTM360social.org. More than 700 people have joined the online community since it first launched in May of O2VERLAP O2VERLAP is a multi-stakeholder project comparing the effectiveness of patient-centered, proactive care methods and reactive care on adherence to positive airway pressure and oxygen therapies. Patients enrolled in this study are diagnosed with both COPD and obstructive sleep apnea (OSA). Having both diagnoses is clinically distinct from living with either alone and is referred to as overlap syndrome. Patients who have both COPD and OSA experience increased rates of morbidity and mortality. During the past year, a series of focus groups (phone, in person and via COPD360social) were held to gain an understanding of gaps in patient education, positive airway pressure therapy use, patient-reported adherence barriers and adherence facilitators. These focus groups became the foundation of the study design and participant enrollment will begin in early COPD Biomarker Qualification Consortium The COPD Biomarker Qualification Consortium (CBQC) was formed in 2010 as a powerful and unique public-private partnership between academia, the pharmaceutical industry and government agencies to fast-track research and avoid duplication of studies. Being able to use a biomarker qualified by the FDA assures drug developers that any potential new drug applications will not be rejected simply because of how the drug s efficacy was measured or how patients were selected. To date, the consortium successfully worked to have the first biomarker for COPD, plasma fibrinogen, approved by both the Federal Drug Administration and the European Medicines Agency. The consortium is working on several other biomarkers and clinical assessment tools, including a COPD Assessment Tool (CAT), srage, Constant Work Rate Exercise and Desmosine Imaging. 6

8 RESEARCH COPDGene Study COPDGene is one of largest studies ever funded by the National Heart, Lung, and Blood Institute (NHLBI) of the National Institutes of Health. COPDGene aims to find inherited or genetic factors that make some people more likely than others to develop COPD. The COPD Foundation is very pleased to support COPDGene and its investigators. COPDGene also seeks to better classify COPD and understand how the disease may differ from person to person. The study s advancements in the past year include the identification of 22 genes that relate to risk of causing COPD and the identification of subpopulations of patients with COPD who are at high risk of disease progression. Additionally, more than 40 articles about COPDGene were published in the peerreviewed medical literature. SPIROMICS SPIROMICS was originally conceived and funded by NHLBI to support the prospective collection and analysis of clinical, biomarker, genetic, genomic and phenotypic data from subjects with COPD for the purpose of identifying subpopulations and intermediate outcome measures. SPIROMICS differs from other large COPD cohort studies due to its large bank of biological samples, including samples from the lung, which can be used to study disease biology. To date SPIROMICS has enrolled nearly 3,000 subjects, performed detailed physiologic assessments, initiated the process for direct adjudication of all deaths and major clinical events (morbidity and mortality) and published 17 manuscripts. The COPD Foundation has obtained support from multiple industry partners to continue the work in SPIROMICS as we await renewed NHLBI funding. 7

9 COPD National Action Plan The COPD Foundation was one of several organizations that participated in a COPD Town Hall hosted by NHLBI to create the COPD National Action Plan, which provides a comprehensive framework for action by those affected by the disease and those who care about reducing its burden. We played an integral role in encouraging the community, particularly patients, to attend this meeting and provided input throughout the process of creating the plan. NHLBI published the COPD National Action Plan in May of The plan has five major goals: 1) empower people with COPD, their families and caregivers to recognize and reduce the burden of COPD; 2) improve the diagnosis, prevention, treatment and management of COPD by improving the quality of care delivered across the health care continuum; 3) collect, analyze, report and disseminate COPD-related public health data that drive change and track progress; 4) increase and sustain research to better understand the prevention, pathogenesis, diagnosis, treatment and management of COPD; and 5) translate national policy, educational and program recommendations into research and public health care actions. Harmonicas for Health The COPD Foundation launched the Harmonicas for Health (H4H) Program in 2016 with the support of Lifting Lives, the charitable arm of the Academy of Country Music. H4H offers participants the opportunity to learn how to better control their breathing, boost their selfconfidence, relieve stress, socialize with others and to just have fun. Twenty-five pilot Harmonicas for Health programs were started during the program s first year. The H4H curriculum is designed as a five-week program of one-hour sessions. In its first year, H4H has impacted the lives of 2,500 people living with COPD and has been enthusiastically embraced by participants, pulmonary rehabilitation coordinators, insurance companies and others. We are confident that H4H will be a powerful vehicle to help change the national conversation on COPD. ADVOCACY 8

10 An average of 200,000 people visit the COPD Foundation website each month, a 78 percent increase over the previous year. Approximately 75 percent of all visits to the COPD Foundation website are from new users. COPD Foundation Website & Online Presence A key element of the COPD Foundation s ability to reach people all over the United States and across the world is our commitment to building an integrated online platform for patients, caregivers and health professionals. Whether it is creating a social outlet for communication and support or using social media to inform the community and recruit participants for research studies, we will continue to build and expand our online presence as a resource for the COPD community. On World COPD Day, more than 10,000 unique visitors came to the COPD Foundation website. COPD360social COPD360social is the COPD Foundation s global online social community and includes 32,000 members from 130 countries. The site serves as a comprehensive platform for patients, caregivers, providers and friends in the COPD community and aligns with our goal of using technology to better understand the patient experience from a holistic, 360-degree perspective. COPD360social provides members with a comfortable and secure venue to share thoughts and ideas, ask questions, start discussions, comment on blogs and communicate with peers, thought leaders and community managers. This platform facilitates communication, providing the COPD Foundation the best opportunity to understand the specific needs of our community. In calendar year 2016, the number of pages viewed was up 58 percent over the previous year. The COPD Foundation Facebook page has more than 21,000 followers. More than 14,000 people follow the COPD Foundation on Twitter. 9

11 RESOURCES FOR PATIENT & PROVIDERS COPD Global The COPD Foundation has established itself as one of the leading voices addressing the needs of COPD patients. Since its inception in 2004, the Foundation has grown both its membership and its strategic vision. As part of this vision, the COPD Foundation has extended its influence and work outside of the United States. COPD Global continues toward its aim of building a strong COPD community around the world, which is able to advocate for minimum standards of care and provide patient education resources that enable improved patient participation in care. Global summits were held in 2014 and In September 2017, COPD Global will host the third international summit in Milan, Italy to convene patient leaders and experts and establish a platform from which to build a global network based off the technology provided by the Foundation s COPD360social platform. PRAXIS The COPD Foundation launched PRAXIS in 2015 as a unique online initiative for healthcare providers, health systems administrators and policy makers to share ideas concerning how to improve COPD care across the continuum and, in turn, reduce preventable hospital readmissions. The online hub for the initiative promotes the sharing of expertise and resources in ways which enable the proactive identification and elimination of gaps in COPD care. The multi-faceted collaborative is built around an online community that serves as the cornerstone for discussion, innovation sharing, learning and resource access COPD Readmissions Reduction Institute Since 2013, the COPD Foundation has been convening summits with stakeholders from around the nation to address the challenge of reducing preventable COPD hospital readmissions. This issue has become particularly important given the Centers for Medicare & Medicaid Services addition of COPD to the Hospital Readmissions Reduction Program as a penalty-sensitive condition. In March of 2017, we began the process of transforming theoretical concepts into real-world solutions by bringing together 80 stakeholders from Connecticut to develop strategies to collectively reduce readmissions in their community. Health systems attended the Institute in interdisciplinary teams (e.g., pulmonologists, hospitalists, case managers and respiratory therapists) and participants worked together to develop implementation strategies for reducing readmissions at their hospitals. This Institute will be used to create a blueprint that can be replicated in states and communities across the nation. 10

12 COMMUNITY & PROVIDER ENGAGEMENT COPD Digest The COPD Digest is the Foundation s free digital magazine published online. The Digest offers practical advice, news and information on treatment and resources for COPD patients, families and caregivers. C D O P D I G E S T RESOURCES, RESEARCH, REPORTS, AND INFORMATION FOR PEOPLE LIVING WITH CHRONIC OBSTRUCTIVE PULMONARY DISEASE Vol. 12, No Go Orange for COPD Awareness Month Page 14 Chronic Obstructive Pulmonary Diseases: Journal of the COPD The Journal was conceived and created as a natural extension of the COPD Foundation s mission to address all things COPD related. The Journal launched in May 2014 on the 10th anniversary of the COPD Foundation as an online-only, open access, peer-reviewed journal publishing original research, reviews, case studies and communications related to COPD. James Crapo, MD is Editor in Chief of the Journal. Educational Materials The COPD Foundation produces a vast array of helpful informational booklets, guides and worksheets designed to help patients, caregivers and medical professionals understand COPD. All information is available for download on the COPD Foundation website and patients can request a copy of any of the materials for free. In the past year, we added the My COPD Action Plan, a valuable tool to improve communication between individuals with COPD and their providers. The plan helps individuals spot signs of exacerbations and helps physicians understand the patient s current activities and limitations. 11

13 FINANCIAL STATEMENTS JUNE 30, ASSETS CURRENT ASSETS Cash and cash equivalents (includes $250,000 and $1,444 at June 30, 2017 and 2016, respectively, which has been temporarily restricted) $2,308,330 $2,767,799 Investment securities $2,030,579 $2,265,488 Accounts receivable, net - current $3,451,741 $1,770,163 Prepaid expenses $133,086 $88,424 TOTAL CURRENT ASSETS $7,923,736 $6,891,874 Investment securities - non-current $404,500 $620,126 Accounts receivable, net - non-current $604,479 $361,299 Property and equipment $18,807 $8,518 TOTAL ASSETS $8,951,522 $7,881,817 LIABILITIES AND NET ASSETS CURRENT LIABILITIES Accounts payable and accrues expenses $1,189,636 $730,905 Note payable $250,000 - Deferred revenue $915,943 $2,671,766 TOTAL CURRENT LIABILITIES $2,355,579 $3,402,671 COMMITMENTS AND CONTINGENCIES NET ASSETS Unrestricted ($1,044,544) ($1,145,543) Temporary Restricted $7,640,487 $5,624,689 TOTAL NET ASSETS $6,595,943 $4,479,146 TOTAL LIABILITIES AND NET ASSETS $8,951,522 $7,881,817 12

14 COPD FACTS & FIGURES COPD is the third leading cause of death in the United States and the fourth leading cause of death worldwide. More than 15 million people in the United States have been diagnosed with COPD and as many as 15 million more could have the disease but are not yet diagnosed. The WHO estimates that more than 210 million individuals worldwide have COPD. Exposure to biomass fuels in developing countries has led to increased rates of COPD in women under age 60. More than 90 percent of deaths attributed to COPD worldwide occur in nations with the lowest median income. 13 1

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